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The good news — for both doctors and patients — is that about two-thirds of primary care can be delivered by someone other than your doctor: pharmacists, nurse practitioners and social workers can all provide support. For older patients, who need more out of primary care as they age, the bonus is that Medicare already pays for much of what they do, but patients may need to know what to ask for, and in turn, how to make the most out of the fifteen minutes they have with the doctor. Among the Medicare services that are under-used: a free wellness visit that results in a written care plan for the year ahead, a sit-down with a pharmacist to go through every medication you take, monthly coordination between your doctor and your specialists, a managed handover in the two weeks after a hospital stay, and training for whoever looks after you at home.

What follows is advice from primary care clinicians on how to approach your visit, how to access additional Medicare services when you need them, and a brief guide to “who’s who” in your primary care practice and how they may participate in your care.

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Before your appointment

There are five key steps that can help you prepare well for your doctor’s visit. Start with a ranked list of your concerns. The three items that matter most should come first, since most appointments will run out of time before getting much further. Any outstanding questions below the top three may be able to go to the patient portal afterwards. Write this list down to refer to during your appointment: it’s all too common to remember your most important question while walking back to your car.

Second, bring all the medications you are currently taking in their original packaging, or photographs of the labels. This may sound like a lot of trouble, but all doctors have stories of patients referring to pills by their color or packaging material because the names and doses of medications are hard to remember on the spot. If you or your caregiver maintain a medication list, that’s great, but it’s important to make sure it is up-to-date and a true reflection of what you are taking. This should include the supplements, eye drops, inhaler and anything bought off the shelf, because these can interact with your prescribed medications and are unlikely to be in your chart. Your symptoms could be the result of a medication you are taking, or may call for a new medication — either decision requires an accurate medication list to refer to.

Third, be a good historian. This is a phrase that doctors use amongst themselves for a patient who can describe what’s happening in a way that helps them make a diagnosis. Take a moment to think about each concern and consider: when it started, what makes it better or worse, and what you have already tried to alleviate your symptoms. It also helps to consider what you are worried it will mean for you. For example, if unaddressed, will this problem make it hard for you to drive, take the stairs, live alone or attend a special event? Communicating this with the doctor helps to set priorities.

Resist the urge to arrive at your appointment with a diagnosis you have uncovered with the help of Dr. Google. Remember that your internet search will produce whatever has been written about and clicked on most often, which may not be the most likely cause of your particular symptoms. Artificial Intelligence has a similar problem but with better manners. It is fluent, confident and ignorant of your full medical history, so a chatbot can give you a false sense of certainty. Use either one to help you prepare questions, but the answers should come from your doctor. Whatever you have read, do not stop or change a medication before you have been seen.

Fourth, take someone with you, and give them a specific task before the appointment. Your companion could be a note-taker, a timekeeper, or the person who will ask the question you are most nervous about. This person should not answer questions on your behalf if it can be avoided.

Finally, wear the hearing aids and bring the glasses! Give yourself the best possible chance to understand your care plan in the short time you will have with the doctor.

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During the Visit

During the visit, say what’s on your agenda right away, that is as soon as you have said hello and taken a seat. In a study of recorded consultations, clinicians asked what the patient had come for in little more than a third of visits, and when they did ask, they interrupted 70 per cent of the time. The time to interruption was only about 11 seconds. (2) Possible explanations include the time constraints on the visit, physician burnout, or a lack of communication skills, but it is sadly a common patient experience. Naming your top three concerns out loud at the beginning of the appointment will help the clinician pace the visit around your list.

You don’t need to feel rushed or embarrassed if you don’t understand something your clinician is saying. Ask Me 3, a health literacy program run by the Institute for Healthcare Improvement, suggests that people remember three simple questions to ask their providers:

At the end of your visit, repeat the plan back in your own words before you leave, and ask the doctor if you got it right. This is a communication skill called “teach-back,” that clinicians are trained to do with their patients - it should be very familiar to them.

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Medicare Primary Care Benefits Explained

The Annual Wellness Visit:

Once you have had Medicare Part B for 12 months, you are entitled to a free Annual Wellness Visit. This is purely a health planning appointment, not a physical. It will include a health risk questionnaire, height, weight and blood pressure, a review of your medical and family history, an inventory of everything you take, screening for memory problems and depression, a check of your hearing and balance, and questions about how you are managing day-to-day. You should leave holding a written schedule of the screenings recommended for you over the next five to ten years, which you can discuss with your doctor when they are due. Advance care planning is also free when it is done as part of this visit. Note that this visit will only remain free as long as it is a wellness visit, so if you raise a new problem for treatment, you may receive a bill for co-insurance. This is not a reason to stay quiet about your symptoms, but something to be aware of.

If you are new to Medicare, you are eligible for a one-time Welcome to Medicare visit during your first year on Part B. This is a slightly different kind of appointment, which includes a brief physical check and a one-off referral for a screening EKG for your heart, but not the cognitive screening or written plan. The two appointments cannot occur in the same year.

Comprehensive Medication Review under Medicare Part D

If you take several medications for chronic conditions and expect high out-of-pocket drug costs, call your Medicare Part D plan and ask whether you qualify for Medication Therapy Management. Eligible members receive a comprehensive medication review: an appointment with a pharmacist who goes through everything you take, followed by a written summary. In that appointment, it’s worth asking if there are any medications that should be removed from the list. Some medications pose higher risks in older adults, so a review can be helpful even if your medications haven’t changed in some time. The American Geriatrics Society maintains a list of higher risk medications called the Beers Criteria, which your pharmacist or doctor will consult to help guide these decisions.

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Advanced Primary Care Management

Ask your primary care practice whether it offers “Advanced Primary Care Management.” This Medicare benefit covers a variety of services: maintaining a written care plan, coordinating with your specialists, adjusting medications by phone, and keeping someone on the team reachable outside office hours. To opt-in to this program, you need to keep seeing the same doctor, who will be the focal point for your care. Medicare pays clinics a monthly fee to care for patients under this benefit, with higher payments for patients who have multiple conditions. You should expect the standard 20 per cent Part B co-payment after your deductible, unless you also have Medicaid or a supplemental plan that covers it.

The question is whether the practice is able to deliver all of the services. Many smaller offices do not have the capacity, so it may not be widely available. Advanced Primary Care Management is a new benefit for Medicare patients — not yet two years old — so it’s too soon to say how many practices offer it and how many Medicare patients have enrolled (official CMS data should be available in Jan 2027). Its predecessor program, Chronic Care Management, reached only about 4 per cent of eligible patients after nearly a decade of the program. (5)

Caregiver Training Services

If someone helps look after you, ask about Caregiver Training Services. Medicare pays for a clinician to teach caregivers practical skills such as medication management, handling daily medical tasks, and how to safely move their care recipient without risk of injury. Ordinary cost sharing applies.

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Transitional Care Management

If you have had a hospital stay, ask for Transitional Care Management before you leave the hospital or call your practice as soon as you get home. The two weeks after a hospital discharge are when things most often go wrong for older patients: medications may have changed, follow-up appointments need to be made and kept, concerning symptoms may be missed. Medicare pays your primary care practice to manage the handover. Your primary care practice should contact you within two business days of the request, and you should be seen within one to two weeks depending on how complicated the discharge was. Take the discharge summary and your medication lists from before and after the hospital stay, so your doctor can make sure your new medication schedule is correct.

Still looking for a service?

If your practice isn’t able to offer a service or your Medicare plan denies something, you still have somewhere to find help. Every state runs a State Health Insurance Assistance Program, or SHIP, offering free one-to-one Medicare counseling from trained volunteers - these are not insurance salesmen. For non-medical needs such as transport, meals and help around the house, you can contact your local Area Agency on Aging, searchable at the linked directory.

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Next week, in the first of a new recurring series called The Aging Atlas, we will look at the crisis facing the UK hospice sector. The Aging Atlas will cover aging in other countries and look for lessons they may have for the USA.

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Other articles in this series on primary care:

“I’m the quarterback for her,” says Levine, “but it would be so nice if she had a geriatrician to be that quarterback who isn’t her daughter.”

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Most eighty-two year olds don’t have a geriatrician in the family, but as most chronic illness is acquired with age, they often have the circumstances that call for one: multiple chronic conditions, a diary of specialist appointments, a lengthening list of prescriptions, and more difficulty with daily activities. More than two-thirds of Medicare beneficiaries have two or more chronic conditions. (1) The growing complexity means that primary care becomes more important to detect emerging issues, manage the care plan and adjudicate between competing recommendations. But, explains Levine, primary care doctors don’t often have the training or the time required to address older patients’ needs.

“You cannot see an 82-year old patient in a standard 15-minute appointment,” says Levine. “It’s frustrating for patients, and for primary care doctors who are expected to see a high volume of patients, it’s a set up for burnout.”

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Primary Care Under Pressure

Primary care clinics are not to blame for the 15-minute appointment. It is an artifact of how the American healthcare system has evolved to pay clinicians by the episode or the procedure, thus rewarding doctors for the volume of patient interactions, each of which must be meticulously documented for billing purposes. US family physicians reported average patient panels of roughly 1,900 people between 2017 and 2023, according to the American Board of Family Medicine. (2) The result is that most primary care clinicians cannot afford the time to coordinate the big picture for their more complex patients, or the relational conversations needed to establish their goals.

“You cannot see an 82-year old patient in a standard 15-minute appointment.”

Time is just one of the challenges for primary care physicians; training is also essential for treating the specific needs of older adults. Levine did her internal medicine residency and her geriatrics fellowship at the same hospital and says that the fellowship showed her what she had been missing in her own patients just a year earlier. She noticed for example, that she had underdiagnosed dementia and failed to initiate advance care planning conversations. Her fellowship also taught her less tangible skills, such as managing the adult daughter who dominates the appointment, working around hearing loss, and letting the patient with mild dementia speak first.

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Geriatricians in Short Supply

The problem is that while primary care clinicians need more time and training, geriatricians are also in drastically short supply. There were just 6,580 practising geriatricians in the United States in 2025, according to data from the US Department of Health and Human Services, representing roughly one geriatrician for every 10,000 older Americans. (3) The American Geriatrics Society estimates that by 2030, the US could need as many as 30,000 geriatriacians. (4) Nurse practitioners have taken up some of the slack, more than tripling their number in geriatrics between 2010 and 2020. But they are heavily concentrated in metropolitan areas, while nearly two thirds of US counties have neither a geriatrician nor a geriatric nurse practitioner. And in 23 states, nurse practitioners still lack full practice authority, with state laws requiring various degrees of physician supervision. (5)

The shortage of geriatricians is becoming more acute as the aging population grows, older doctors retire, and younger doctors choose other specialties. In the 2026 match - the annual process that assigns newly-qualified doctors to their preferred training posts - geriatric medicine filled just 39 per cent of the 388 available fellowship positions, the lowest fill rate of any internal medicine subspecialty and down from 58.7 per cent in 2023. For comparison, cardiology, thoracic surgery and surgical oncology all filled 100 per cent of available fellowship slots. (6)

Young doctors have legitimate reasons for choosing other career paths. Geriatric medicine is notoriously one of the least well-compensated medical specialties, paying an average of around $292,000 a year, less than internal medicine despite requiring further training, and less than half what the average cardiologist earns. (7) Levine believes that compensation packages for geriatricians are beginning to improve, but her local observations are yet to show up in the national data. The work is also particularly challenging in a way that the payment system hasn’t typically rewarded: coordination of care for multiple conditions, polypharmacy, complex care plans, but few procedures. And finally, there is a shortage of role models. Most medical students never watch anyone do it: according to a 2021 survey of medical school deans, only about one in ten American medical schools require any clinical experience specific to geriatrics. (8)

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Big G and Little G

In response to the shrinking pipeline of new specialist geriatricians, a variety of strategies have emerged as health systems work to meet the healthcare needs of older adults: training programs for clinicians in core geriatric skills, interdisciplinary teams to ease the burden on primary care doctors, and experiments with new payment models. Patients and families can look for signs of these strategies when choosing their providers: such as a designation on a clinic’s website, access to a pharmacist, social worker or dietician, or appointments that last longer than fifteen minutes.

Geriatricians have a shorthand for the approach: big-G and little-G. “There are never going to be enough big-G fellowship-trained geriatricians to take care of all of the older people that we have in this country,” says Dr. Alexandra Petrakos, a geriatrician at Northwestern Medicine. “So we have to educate the primary care workforce to be better little-G geriatricians.”

The argument is that the big-G specialists should be concentrated where the need is greatest - on the most frail and complex patients - while others are cared for by a primary care doctor who has had additional training. Since 2015, Congress has funded the Geriatrics Workforce Enhancement Program (GWEP), which trains around 70,000 clinicians a year with basic geriatrics skills through a variety of grant-funded training schemes. (9) One example is Project ECHO, in which specialists at an academic hub run regular case-based video sessions with community clinicians who have no other route to the expertise. UChicago is one of the national hubs for ECHO: during the pandemic, Levine’s team trained nursing home staff across Illinois in managing outbreaks. GWEP funding appeared to be at risk for the 2026 budget, but has since been restored by the Health Resources and Services Administration.

The GWEP training does not have a verifiable national credential, however. Board certification in geriatric medicine appears in public directories; but completing one of the GWEP federally-funded courses does not. So for anyone who can’t reach a geriatrician, the question to put to an internist is about their experience: how many patients over eighty are in your practice, and what extra training have you done?

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Age Friendly Health Systems

Another ambitious strategy has been the movement for “Age-Friendly Health Systems.” Developed ten years ago by the John A. Hartford Foundation and the Institute for Healthcare Improvement in partnership with five large health systems, the model provides clinicians with a way to deliver care for older adults using a framework dubbed the “4 Ms.” It has seen widespread adoption in health systems around the country, and now more than six thousand hospitals and practices have received the designation of “Age-Friendly Health System,” reaching 9.9 million older adults. (10)

“The goal of the age-friendly health system is to ask us to change how we think about the patient.”

The 4Ms framework is intended to reorient healthcare providers to focus on the patient’s overall well-being and function, in a shift away from the traditional focus on disease states or organ systems. The four Ms are:

1. What Matters: Ask about the patient’s desired health outcomes and care preferences, and match treatment with them.

2. Medication: Review the patient’s medication to look for high-risk medications, overprescribing, or interactions, and ensure that medication interferes with the other Ms as little as possible.

3. Mentation: Assess cognitive function to prevent, identify and manage dementia, depression and/or delirium.

4. Mobility: Focus on keeping older adults moving safely so they maintain or improve function.

Some health systems add a fifth, an addition that came out of a parallel effort in Canada, Multicomplexity: Weigh the patient’s medical conditions, socioeconomic circumstances and resources together, not one at a time.

“The goal of the age-friendly health system is to ask us to change how we think about the patient,” says Dr. Magdalena Bednarczyk, Chief of Geriatric and Palliative Medicine at Chicago’s Rush University Medical Center, an early adopter of the Age Friendly philosophy. Bednarczyk says that the model is successful in part because it helps clinicians overcome the complexity that often accompanies older patients with multiple conditions, medications and/or psychosocial needs. “The challenge for clinicians isn’t always about deciding what to do, it’s about deciding where to start. The framework helps to answer that question.”

Dr Melissa Dattalo, who runs home and community care for Northwestern Medicine, explains how this works in practice by describing a patient who was exhausted from lack of sleep. The patient lived independently at home, had mild cognitive impairment and walked with a walker — but the exhaustion was drastically affecting her ability to function. When Dattalo asked about her nights, the woman explained she was making repeated trips to the bathroom, and experiencing hallucinations that were distressing enough that she would switch on the light to make them stop.

“Maintaining function is the heart and soul of good geriatric care.”

Dattalo added no new interventions. She instead reduced or stopped medications, changed the lighting so that shadows were no longer alarming, and asked the woman to put her legs up for two hours before bed to manage her fluid retention. The hallucinations stopped, she slept and she got her days back to enjoy. “Maintaining function is the heart and soul of good geriatric care,” says Dattalo. “So much of medicine is do, do, do — prescriptions, interventions, tests — but the solution for her was to cut back.”

The great hope of the Age-Friendly movement is that not only will clinicians reorient their practice to consider the 4Ms, but that patients will demand that they do. “This should be a consumer expectation,” says Robyn Golden, co-director of the Rush Center for Excellence in Aging. “They should ask about age-friendly care just like they ask about the drugs they have seen advertised.”

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Alternative Payment Models Support Interdisciplinary Geriatric Clinics

An ideal version of Age-Friendly care looks like Levine’s own clinic. The South Shore Senior Center, in a converted gas station ten minutes from the UChicago campus on the South side of Chicago, serves around 3,000 patients with a large interdisciplinary team. It employs twelve geriatricians, three geriatric nurse practitioners, an on-site pharmacist, an audiologist, a geriatric psychiatrist, physical therapists, and a memory center with its own neurologist and social worker. A case manager tracks the patients who cycle in and out of hospital, and a community health worker visits them at home. A new patient appointment lasts an hour. In the clinic’s frailty assessment service, built to determine whether an older patient can safely undergo surgery or a course of cancer treatment, for example, the appointment lasts 90 minutes and includes a walking test, chair stands, and assessments of cognition, nutrition and home safety.

Clinics like Levine’s depend on non-traditional payment arrangements to avoid the 15-minute appointment problem and fund their interdisciplinary teams. There are a variety of complex contracts between insurance companies and health systems that can support these clinics, but put simply, instead of payments per episode or per procedure, clinics are paid for keeping people well. Clinics arranged around this model can spend longer with their patients to design thoughtful care plans that keep them healthy and out of the hospital and the emergency room. They can also provide more support through an interdisciplinary team: the support of a social worker to arrange transport to doctor’s appointments, a pharmacist to do a thorough medication review, a dietician to help manage diabetes and so forth. By preventing visits to the emergency room and hospital admissions, the health system then gets to keep a share of the money that it saves.

Levine is careful about how she describes what she has. “My clinic is like the dream team,” she says. “Most clinics are not going to have the same resources.” Levine’s advice for anyone choosing a doctor for an older parent is more feasible than whether they can find a full-service geriatric clinic: find out whether there is at least a social worker in the practice. Bednarczyk at Rush agrees: “At the end of the day, the provider is not able to address and care for every single concern,” she says. “So you need an interdisciplinary team.” Rush has kept a full-time social worker in its geriatrics practice for more than thirty years, and its outpatient pharmacists take on the medication reviews.

Unfortunately, for a great many people, there is only one primary care practice within reach and no geriatrician at all. So the question might not be which clinic to pick, but how to get more out of the one that is available to you. In next week’s Aging Almanac, we’ll look at how to get the most out of the 15-minute appointment, and who else on the care team can give you the time that your doctor can’t.

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Until then, please enjoy three pieces from the archive worth revisiting: “The Room Where It Happens”, on the three conversations families put off; “A Guide to the Fine Print of Working Retirement,” on the tangled rules for people working past traditional retirement age, and “The One Caregiver Problem”, on how family caregiving often falls to one person, and how families can try to divide the work more evenly.

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The Aging Almanac is taking a couple of weeks off after a busy reporting season, but I want to leave you with a taste of what’s to come, and some lessons from the last six months. Over the past few weeks, I have been in Chicago, reporting on the importance of primary care for older adults with expert insight from the teams at the University of Chicago, Northwestern University and Rush University Medical Center. Then London, to report on the UK hospice sector and one of the NHS’s signature dementia care programs. I’m looking forward to launching a new recurring series about aging outside the United States, where we might learn from the experience of others.

We’re also coming up to Medicare enrollment season amid cuts to Medicare drug subsidies, so insurance has been on my mind. These are stories I’ll bring you in full over the coming weeks. If there is someone in your life who would benefit from these or any of the Almanac’s earlier articles, please do hit the share button and send it to them.

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The goal of the Almanac is to give readers an evidence-based guide to a complex season of life. Time comes for us all, but how can we work longer, plan better, care for ourselves and others, and make informed decisions about health, money, housing and caregiving? For those who joined recently — the more than 500 of you who weren’t here at the start — I recommend reading the piece that set out what this newsletter is for, and why I write about aging. I’ve added the link to that here.

As I’ve expanded my reporting across these subjects, it’s become abundantly clear that the challenges we face as we age are more connected than we care to admit. Some examples: diet feeds cognition, caregiving can be terrible for your own health, and a single fall can have ripple effects on your housing, finances and family all at once. The trouble can compound the way credit card interest does. Equally, early preparation and small consistent lifestyle changes can have big payoffs: planning decisions made and shared before a crisis, a walk every day, a change to what’s on the plate, a grab rail or better lighting, seeking out new friendships and interests.

And as I’ve tried to learn about you, the audience, it’s clear that many of you are caregivers looking for guidance and support while caring for loved ones. With that in mind, I have recently reorganized the website to make articles easier to browse by topic, in addition to chronologically via the full archive. Please visit and pick up on the pieces you may have missed. I would also love to hear from you - readers can share stories, ask questions and suggest avenues of investigation by sending an email to agingalmanac@substack.com.

One of the most-read pieces of the last six months was an interview about the emotional realities of caregiving with clinical psychologist Allison Applebaum, PhD.

Applebaum is a professor of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai in New York, where she leads the Steven S. Elbaum Family Center for Caregiving. In the weeks since I sat down with Applebaum, and in an exceptionally difficult government funding environment, she has received a notice of grant funding from the National Cancer Institute to test a communication skills program for caregivers of patients with advanced cancer. An earlier version of the training reduced anxiety and distress among caregivers of brain tumour patients and left them better prepared. Congratulations Allison!

The Aging Almanac will return to its usual Thursday morning schedule on August 27.

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But conditions that cause dementia are unlike many other diagnoses in one crucial respect: dementia slowly erodes the decision-making ability that the law requires to put a plan in place. Nearly every protective step a family might take rests on the person being able to understand and authorize it themselves. That ability — known as legal capacity — doesn’t vanish overnight, but it does fade, sometimes faster than families expect. When families wait too long the decisions don’t disappear; they simply move from the kitchen table to a courtroom, at far greater cost and strain.

That makes the period right after a diagnosis one of the most consequential moments for a family to act. What needs to be done, and in what order? And how do you protect someone you love without stripping away their dignity in the process?

To answer those questions, we sat down with Sara E. Meyers, partner in the firm Enea, Scanlan and Sirignano, LLP. Meyers concentrates her practice on elder law, guardianships and long-term care planning strategies, and she has spent three decades guiding families through exactly these issues. She practices in New York, and while the specific rules vary from state to state, the principles she lays out apply in other jurisdictions. In the conversation that follows, she walks through what to prioritize first, why a handful of documents matter so much, how families should plan for long-term care, and how to keep a vulnerable person safe from those who would take advantage.

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When a family comes to you right after a dementia diagnosis, what’s the scene and how do you begin?

Usually it’s panic and confusion. People really don’t know what to do — and there’s so much to address medically, financially, and legally to get that person’s affairs in order. A big part of working with an elder law attorney is making sure the attorney listens. It’s critical that the person who’s been diagnosed feels heard and has agency. So before you hit someone with all the legal things they “should” be doing, you have to develop a rapport.

One of the signs of early-stage dementia is paranoia—you can’t find your keys or your wallet, and you start to feel like someone is trying to take these things away from you. So when I explain the legal documents, I frame them as a way of taking control, not losing it. You get to designate who handles your medical decisions if you can’t, through a healthcare proxy, and who handles your finances, through a power of attorney. You’ve been diagnosed with something that unfortunately doesn’t get better, so the question becomes: what can you control? And it’s so important to do this before the dementia reaches a point where you no longer have the capacity to understand and sign.

What does legal capacity mean—and when has the window for capacity closed?

There’s a famous Supreme Court line about pornography: “I know it when I see it.” Capacity is a little like that. Legal capacity is different from medical competency, and the legal side is somewhat subjective. At one end you have someone with early-stage dementia who’s losing their keys but still knows that they bank at Chase and worked at IBM for fifty years. At the other end, you may have someone who isn’t oriented to person, place, or time — faces are familiar, but they couldn’t tell you whether you’re their son or their brother. The real question is about the gray middle, and that’s hard to define.

In New York we don’t use the diagnosis to draw the line; we look at functional limitations. Are you aware of your assets? Can you handle your own medical and financial affairs? No two dementias are the same — so two people can both be “stage two” and function very differently. That’s why you build rapport first. Some people with dementia have a script and can sound wonderful for the first ten minutes, but then loop back to the same script. You have to tease that out through conversation. If you rush in and say, “I’m Sara, let’s sign,” you haven’t talked long enough to know whether the person has capacity or is just in that scripted loop.

And once the window for legal capacity has closed, what are the family’s options?

In New York, the option is guardianship—some states call it conservatorship. You petition the court to have a family member appointed guardian of the individual’s “person and property,” because they can no longer make medical and financial decisions for themselves. There’s a hearing where the petitioners testify about the person’s functional limitations and who should serve as guardian.

What I tell clients is this: simple planning in advance costs a fraction of what a guardianship does. A court proceeding can run $10,000 to $20,000, all because someone didn’t sign, or refused to sign, advance directives. There’s still so much stigma around this.

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So which are the most important documents to have in place?

The power of attorney and the healthcare proxy are the two most important. People ask me, “What’s the most important document — the will?” No. If you die without a will, there’s a statute that dictates where your assets go. But if you become incapacitated during your lifetime without a power of attorney and a healthcare proxy, your family ends up in a court proceeding just to take control.

It’s helpful to keep the documents broad, the power of attorney especially. New York’s form has the statutory powers plus a section for modifications, and that’s where the gifting powers go. You want a broad power of attorney with broad gifting authority so that, down the road, an agent can move or gift assets to do Medicaid planning, or to address an estate tax issue. You want your agent to preserve the flexibility to handle any of those scenarios.

I’d also recommend a living will. In New York a living will isn’t legally binding on its own, but it gives direction to your healthcare proxy as evidence of your end-of-life wishes.

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What goes into a living will?

Essentially it says that if you’re in a vegetative or comatose state with no chance of recovery, you don’t want artificial respiration, CPR, or tube feeding, and you want maximum pain relief. It means your healthcare proxy isn’t really making the decision— you’ve already made it, and they’re just carrying out your wishes. As a parent you want to protect your children, and this protects them from having to make these decisions for you.

A living will also helps in another situation: if someone is home on hospice, goes into cardiac arrest, and 911 is called, the living will helps ensure they won’t be transported to the hospital. This provides real peace of mind for a family that has chosen to let their loved one die at home.

Why is it so important to plan ahead for Medicaid, and why would a family with savings end up needing it?

Because care is staggeringly expensive. In the lower part of New York State, a nursing home can run $20,000 to $25,000 a month, and around-the-clock home care $15,000 to $20,000. Even substantial savings disappear fast — $1 million at $200,000 or $300,000 a year runs out incredibly quickly. So we look to Medicaid, but you have to plan for it because the program for nursing home Medicaid has what’s called a “look-back period” for your financial assets.

Nursing home Medicaid falls under federal law, with a five-year look-back. When you apply, you provide five years of financial records — yours and your spouse’s — and document every transaction over a threshold, usually $2,000. Uncompensated transfers that aren’t exempt get penalized –- this is when you have given money away or sold something for less than its fair market value. But some transfers are exempt: to a spouse, for example, or to a disabled child or a supplemental needs trust for that child.

If you need Medicaid for nursing home care, you can transfer everything to your spouse — that’s an exempt transfer. This is exactly why that broad power of attorney with gifting powers matters so much. If the person later needs nursing home Medicaid, we can implement a “crisis plan” to preserve some of the assets. Without that document, those avenues are largely closed.

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What about home care under Medicaid?

New York has the most robust Medicaid home care program of any state, though with the tight state budget many clients are being offered fewer hours of care right now.

Here’s something many people don’t realize: in New York, there’s no transfer penalty for home care the way there is for nursing home care. So if I need home care, I — or my agent under a power of attorney that allows gifting — can transfer assets, and as long as I’m below the Medicaid asset limit, around $33,000 in non-retirement money, I can qualify.

Albany passed a two-and-a-half-year look-back for home care in the March 2020 budget, but COVID stalled it, and it still hasn’t taken effect. For now, there’s no transfer penalty on home care.

These rules are dauntingly complex to navigate alone, what are the pitfalls?

They are. Families often arrive after unintentionally making the situation worse — “Don’t worry, we already moved all of Dad’s money into our names.” But Dad’s in a nursing home now, and that move wasn’t helpful. In a crisis, we can typically protect only forty to fifty percent of the assets.

Nursing homes also often won’t tell residents to consult counsel because the private-pay rate is significantly higher than the Medicaid rate. It’s a sin of omission — they just don’t mention that an option exists.

Do people worry about the cost of consulting a lawyer?

Unfortunately, yes, but it’s penny wise, pound foolish. People come in saying, “We found forms online six months ago, and now Dad doesn’t have capacity and the forms are no good.” Maybe they weren’t state-specific, they didn’t include gifting powers, or the named agents acted as the witnesses. You get what you pay for, especially in crisis mode.

The Medicaid rules are complex and ever-changing. There’s a certification called CELA—Certified Elder Law Attorney; there aren’t even forty of us in New York State. You want someone who truly knows this area of law.

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Older adults with dementia are particularly vulnerable to financial abuse—who’s the most common perpetrator and what are the warning signs?

It’s often family. The classic case is: “I moved in to take care of Mom, but we inherit equally when she dies — that’s not fair, so I’ll start helping myself.”

Financial abuse often goes hand in hand with isolation: badmouthing the sibling, refusing to put calls through, telling visitors at the door that “Mom doesn’t want to see you.” Then there are neighbors who “help” by taking Mom to the bank and skimming cash. And the online scams — romance and investment schemes — where someone vulnerable clicks once and keeps paying. Once that money’s gone, it’s very hard to recover.

With isolation, the signs are concrete: Mom’s cell is suddenly disconnected. You go to the house and no one answers. That’s when you call Adult Protective Services. With scams, the person often becomes secretive and starts hiding things.

How should families think about protecting their loved one from financial abuse?

The moment of diagnosis is the time to get organized: locate all the assets and determine who has access, consolidate old accounts, change passwords, turn on two-factor authentication, and set up bank alerts. Also make sure the bills continue to get paid, especially the long-term care premiums, so the policy doesn’t lapse right when you finally need it.

The best protection is having a trusted person who can access the accounts and a financial advisor who’s paying attention. If $5,000 a month has come out for years and suddenly I’m asking for $150,000, that advisor should freeze the account and find out what’s going on.

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What do families most often fail to do after a diagnosis?

Dad says, “I don’t want to sign,” and they do nothing. There’s no follow-through. People also have inertia—”If I don’t admit I have a diagnosis, then I don’t have it.”

Families are also more spread out now and may not even realize what’s happening. I once handled a case where Mom had significant dementia and Dad was quietly covering for her. She was fine for a half-hour visit. Then Dad had a stroke, and only then did the children realize their mother had dementia. We ended up bringing guardianships for both parents.

Having those conversations, and de-stigmatizing the diagnosis, would go such a long way.

And what does it look like when a family gets it right?

It’s wonderful. A couple comes in and both do their planning — powers of attorney, healthcare proxies, wills, and maybe a Medicaid asset protection trust to start shielding assets against the cost of long-term care. Everything is organized, so when care is suddenly needed, it’s all in place.

Compare that to the more common scenario: Dad has had dementia for years and nothing was done, the house is jointly held with no power of attorney so we can’t retitle it, and now we’re running three legal matters at once.

The difference is night and day. When it’s done right, everybody knows what’s going on and the individual’s goals and wishes can be honored.

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Other articles in this series on the early stages of dementia:

Nearly 12 million Americans provide care for a loved one living with dementia, some 19 billion hours of it a year, according to Alzheimer’s Association. (1) The role is demanding and time-intensive, and becomes more so as the disease progresses. Few family members recognize their role as caregivers: they see themselves first and foremost as husbands or wives, daughters or sons. But Shaw says that when people do not consider caregiving as a formal role they do not think to train for it, contributing to physical, emotional and mental burnout.

Discouraged by the lack of mentorship and support during Rebecca’s illness, Shaw retrained as a mental-health counselor, moved from the oncology to the geriatrics department at Wake Forest University School of Medicine in North Carolina, and founded a memory counseling program that has since worked with several thousand families. As both a counselor and a caregiver he kept asking care partners a single question — what do you need most? He distilled their answers into a framework that became the basis for a structured counseling and support program at Wake Forest, and a 2019 book for caregivers of people living with dementia. Shaw is now partnering with dementia charity CaringKind, which has developed a structured 10-week support program for caregivers, with plans to seed the program nationally in other organizations and communities.

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Looking Ahead: Understanding the Brain in Dementia

Families often feel overwhelmed in the wake of a dementia diagnosis, with fear the dominant emotion. “We naturally fear the unknown,” says Shaw, “and in the caregivers that I see in my counseling practice, people want to know: What’s next? What am I going to face tomorrow?” Education is one of the first central needs of caregivers that Shaw’s program tries to meet: about the brain and cognitive function, the types of conditions that cause dementia, stages of progression, and how each condition can be very different in its early stages before converging at the end.

Teepa Snow, a nationally-recognised occupational therapist and dementia care training specialist working with families and professionals, is careful to correct a common misconception at the start of every training session. Dementia is not a memory problem, but a progressive failure of the brain. Different regions of the brain may fail at different times, even with the same underlying condition, taking specific abilities and sparing others. Understanding which part of the brain is affected and what is still intact can help care partners translate the person’s experience of the world, their behaviour and what they may be trying to communicate.

Vision is a helpful example. Peripheral vision narrows steadily as the disease advances; by the middle stages, the usable field can be a tunnel roughly a foot across, as if the person were looking through binoculars. A caregiver may see her husband startle at a touch on the arm, leave food untouched on one side of the plate, or ignore someone standing at his elbow. He is struggling because the visual stimulus is outside the tunnel; approach from the front, and the behaviour disappears. The disease may also affect the person’s ability distinguish shades of colour, or to merge the two pictures from the eyes, resulting in either double vision, or loss of depth perception as the brain selects only one picture. Any of these could make an all-white bathroom a confusing and distressing experience for someone living with dementia.

Understanding the loss of language can offer similar insights, says Snow. Nouns fail first, making it difficult to recall names or everyday objects, and vocabulary slips faster than the comprehension of tone and rhythm. As the disease progresses, an irritated tone or an encouraging one can communicate more than words alone. What survives is just as instructive for caregivers: rhythm and music, long-practised movements, social graces, emotional memory, and “forbidden” language (racist, sexual, or otherwise offensive words). For the caregiver, this knowledge can provide ways to understand, communicate and support their loved one.

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Before the disease progresses too far, Shaw says another central need for caregivers is to prepare legally and financially for what is to come. Average life expectancy after a dementia diagnosis is eight to ten years, and this is lengthening with advances in early diagnosis — but experts urge families not to delay the paperwork. Starting early gives patients the most control over their future, since decision-making capacity is one of the earliest losses. In next week’s Aging Almanac, we talk to Sara E. Meyers, partner in the firm Enea, Scanlan and Sirignano, LLP, about what to prioritize, why a handful of documents are so important, and how families should plan for long-term care. One valuable preparation is often missed: involving the diagnosed person in their own end-of-life decisions while they still can. Shaw’s family did. “This was,” he says, “very much a blessing.”

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Caregiving as a Team Sport

A further three of the needs in Shaw’s framework are in the realm of building supportive systems and habits: take care of yourself, ask for and accept help, and adapt to changing relationships.

The default position for most caregivers is self neglect. Family caregivers report feelings of isolation, difficulty taking care of themselves, poor health, and physical and emotional strain, according to surveys from AARP and the National Caregiving Alliance. (2) Shaw’s argument is that caregiving is too often overwhelming as a private act of devotion, and is more manageable as team operation: staffed, scheduled and renegotiated as the disease takes its course. “Caregiving is a marathon, not a sprint,” says Shaw. “You have to be intentional about taking care of yourself.” Shaw’s prescription includes taking scheduled time off: his minimum is one afternoon a week, one overnight a month, one week away a year.

Caregivers also need a support team of family, friends, and paid help if possible. Shaw offers his own household as an example: the Shaws needed seventeen people involved in Rebecca’s care. Shaw asks families to settle, before it becomes urgent, who will tackle different tasks, as each phase of the disease brings its own stress point — at diagnosis there is the sense of vertigo about the future, at the far end, there is the most basic care. He jokes: “Who in the house is going to be the rear admiral when it comes to toileting?” The joke has a serious edge to it: tasks not assigned in advance will fall to one exhausted person by default.

Adapting to changing relationships is perhaps the hardest of all. Dementia changes personality and emotional expression, in addition to the other functional losses. “It upsets the family system apple cart,” says Shaw. Roles migrate from spouse to nurse, from child to guardian, and the division of labor shifts for everyone. This is where professional counseling can do the most good, he says, to help the family adapt to a new system for their new reality.

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The Long Goodbye

The remaining needs in Shaw’s framework concern how a caregiver processes his or her experience: tell and retell your story, grieve your losses, explore existential and spiritual issues.

Caregivers need a witness to how hard it is, and someone to care about them as an individual. The listener can be a relative, a friend, a member of a faith community, or a professional. Shaw’s conviction, formed over decades of running support groups, is that a group of fellow caregivers supplies something that the others cannot: peers who need no translation of the experience. Reluctance to join a support group is common, but usually short-lived. “I was hesitant to attend,” said one participant in a CaringKind support group, “but once I got there, I just feel like it was the biggest gift. It made me feel like I belonged.”

The story most often told is one of grief. Shaw repeats a claim from the literature — that the grief of a dementia caregiver may be the longest and hardest a human being can experience. There are the personal losses: the caregiver’s own time, caught in the tension of “I need more time for me, but I need more time for him or her.” For couples, there is the loss of the twosome — the couple’s shared identity, their intimacy, and the future the pair had planned together. One husband in a CaringKind support group described reaching the end of his marriage while his wife was still living: “I realized that I had lost my marriage. The woman I married was no longer there; but we had 37 beautiful years.” And then there is what Shaw calls the most neglected loss, the loss of peace of mind: “You’re always sleeping with one eye open.”

The final need in Shaw’s framework is existential: “Why me? God, how could you allow this?” Some caregivers manage, in time, to find meaning in their experience but there are many more that struggle. The point of asking is not that the answers exist, says Shaw — mostly they do not — but that giving voice to the questions has therapeutic purpose.

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Taking it National

CaringKind has built Shaw’s framework into a ten-week program called Partnering Together: it runs roughly 30 workshops a year, feeding 21 ongoing support circles. Participants are surveyed before and after. Of those who finish, 93 per cent report improved knowledge, 83 per cent say they feel better prepared, and 80 per cent say they can talk about their situation more easily than they could in week one. The charity is now working to take the program national, seeding it in other organisations and communities.

As covered in earlier issues of The Aging Almanac, the wider health system is also starting to recognise the caregiver as a second patient with predictable and answerable needs. To meet the specific needs of dementia caregivers, in July 2024 Medicare launched a program called GUIDE — Guiding an Improved Dementia Experience — an eight-year test program that pays care organisations to meet many of the needs in Shaw’s framework: care navigation, a 24-hour support line, caregiver training, and respite care so that the family member can step away. Some 330 organisations have signed on so far. Several health systems, even if they are not yet part of the GUIDE program, have caregiver support programs for families living with dementia. If you are caring for a loved one with dementia, ask what is available in your health system.

For readers who want somewhere to start:

• The Alzheimer’s Association runs a 24/7 helpline (1-800-272-3900) that can help with care planning, respite care and finding support groups.

• CaringKind runs a 24-hour helpline (1-646-744-2900) and lists its workshops and support groups at www.caringkind.org.

• Shaw’s book, “The Dementia Care Partner’s Workbook,” sets out the eight needs in full and is written for families rather than clinicians.

• Teepa Snow’s Positive Approach to Care publishes several hundred free training videos on YouTube, most of them short, covering practical questions for caregivers.

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Other articles in this series on the early stages of dementia:

Raskin was one of three people living with dementia who shared their experiences of life after the diagnosis in a session they called “Act Two,” to describe how they coped with the shock and looked for a way to keep living. While much of the cultural conversation around dementia is focused on the agonizing late stages of the disease, none of the panelists spoke of waiting for decline; all were searching for how to sustain and enrich their lives for as long as possible. Jim Stanley, a social worker diagnosed with mild cognitive impairment five years ago, described reaching “the other side, to a place of hope and resilience, and even hard-won abundance.”

The core post-diagnosis experience they described is well-known among people who work in the field. Stephanie Shivers, who runs programs at dementia charity CaringKind, calls it “diagnose and adios:” the news gets delivered, the doctor says come back in six months, and the family walks out with little ongoing support. Michael Pollack, a third panelist who is living with Alzheimer’s Disease, said: “If you get cancer, you’re immediately connected to a cancer survivor. If you’re an alcoholic, you go to a group, you get a sponsor. Where is my sponsor?”

Patients and families often take years to recognise the early symptoms of dementia and obtain a diagnosis — a journey we covered in detail in last week’s Aging Almanac — so it’s little wonder that families expect more support once the verdict has been delivered. But with advances in therapeutics and research, there is now more available for newly-diagnosed families. The options, both old and new, fall into four parts: drugs that manage symptoms, drugs that slow the disease itself, the daily habits that support a working brain, and a type of therapy that is gaining increasing attention for its success with dementia patients, known as cognitive stimulation therapy (CST).

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The Limits of Medicine

Until recently, the only medications available for people living with dementia were for symptom management. So-called “cholinesterase inhibitors” (donepezil, rivastigmine and galantamine, sold as Aricept, Exelon and Razadyne) have been in use for about thirty years and they can steady memory and attention for a time — usually around 6 to 12 months. Memantine, sold as Namenda, works a different way and is often added alongside them. These medications eventually lose efficacy because while they support brain function, they do not slow the underlying disease in the brain. Nor do they help all patients: the same pill can help one type of dementia and do nothing for another.

The last three years have brought the first drugs that modify the disease itself, rather than its symptoms: lecanemab and donanemab, sold as Leqembi and Kisunla, are the first treatments shown to slow Alzheimer’s Disease. Given by infusion every two to four weeks, they work by clearing amyloid, the protein that builds up in the Alzheimer’s brain. The benefit is real but modest: the drugs roughly double the chance that patients can arrest their decline but do not reverse it. In the trials, about a third of patients on placebo held steady over eighteen months, compared to roughly 70 per cent on the drug. (1, 2) The new therapies do nothing for Lewy body, fronto-temporal or vascular dementia, which together make up a significant share of cases and still have no drug that changes their course. Lecanemab and donanemab were FDA-approved for the treatment of early-stage Alzheimer’s Disease in 2023-24, and in 2025, the FDA approved a version that could be administered at home with a weekly injection.

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The arrival of these new therapeutics was hailed as the first real progress against Alzheimer’s in two decades, but they are not without controversy — specialists have been split over whether a modest slowing of the disease is worth the accompanying risk. The drugs can cause brain swelling or small bleeds, a dangerous side effect called ARIA that occurs in a sizable minority of patients and at higher rates for carriers of a particular gene variant. To manage this risk patients are tested for the gene, and then have repeat MRIs while on the drug. A 2025 Alzheimer’s Association survey found many Americans willing to accept some risk for a chance to slow the disease, but whether the balance is worth it is a judgement each patient makes with their neurologist. (3) A next generation of “shuttle” antibodies is now in trials, including trontinemab, which aim to get more of the drug into the brain with less risk of ARIA. If successful, FDA approval is still a year or two away. (4)

The drugs are also costly: lecanemab costs about $26,500 a year and donanemab about $32,000, in addition to the expense of the required scans. Medicare pays for both drugs, but a patient on original Medicare still owes the 20 per cent co-insurance, around $5,000 a year, unless they hold supplemental coverage, and Medicare Advantage plans demand prior approval before the first infusion. (5)

Even then the drugs are hard to actually get. Eisai and Biogen, which make lecanemab, set an early goal of 10,000 American patients by March 2024 and missed it badly: only about 2,000 were on the drug that January. Uptake has climbed since, and first-quarter 2026 sales were up 74 per cent on the year, but the base is still small. By the end of November 2025, about 13,000 Americans had received at least one dose since the drug launched in 2023. Most who start stay on it, with about two-thirds still in treatment after two years. (6) The reason is infrastructure. A candidate needs a specialist who is willing to prescribe, a confirmed amyloid result from a PET scan or spinal tap, genetic testing, an infusion centre within reach, and repeated MRIs to watch for swelling and bleeds. That machinery is concentrated in urban teaching hospitals and is much harder to access across rural America, where a shortage of neurologists already means long waits.

For many newly-diagnosed families, then, the drugs will be a small part of the answer, and the newer therapeutics may not feature at all. Another strategy is within everyone’s reach, and it starts at home.

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The Daily Habits that Help

For Jim Stanley, it started with walking or running to clear his head; meditation and exercise, he said, were what brought him out of the initial shock. Michael Pollack adjusted his diet and became a marathon runner — he ran the Boston and New York City Marathons in the same year — and he makes a point of going out every day and trying to get lost. Hillary Raskin found solace and guidance in a Caring Kind-sponsored support group, through which she has met other people living with the early stages of dementia, engaged in conversation and activities, and shared her experience.

Their instincts are sound. Over the past decade, our understanding of what supports brain health has grown, and it includes a Mediterranean or MIND-style diet built on vegetables, fish and olive oil, regular exercise, a protected seven hours of sleep, and social engagement. These habits don’t treat the disease, but they can help people at risk or in the early stages of dementia to maintain better daily function, steadier mood, and a longer stretch of independence.

The 2024 Lancet Commission on dementia estimated that up to 45 per cent of cases could be delayed or prevented by addressing fourteen risk factors across a lifetime: among them high blood pressure, smoking, diabetes, obesity, physical inactivity, excess alcohol, social isolation, depression, untreated vision or hearing loss, and high cholesterol. (7) Neurologists say the most overlooked of these risk factors is hearing. Untreated hearing loss was the largest single risk factor named by the Lancet Commission, and in a 2023 trial, hearing aids slowed cognitive decline by nearly half among older adults at higher risk. (8) The leading explanations are twofold: the effort of decoding muffled sound drains mental resources that would otherwise go to memory and thinking, and the strain of not being able to follow a conversation pushes people out of company and into the isolation that wears on the brain in its own right. For a newly-diagnosed patient a hearing test can make a world of difference.

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The Alzheimer’s Association’s U.S. POINTER trial, reported in 2025, helped to establish that it’s never too late to start on prevention. Researchers put more than 2,000 older adults at risk of decline through two years of deliberate lifestyle change: regular exercise, the MIND diet, mental and social challenge, and routine health checks with a clinician. Both a closely structured program and a lighter, self-guided version improved thinking and memory, with the structured group gaining more, and the benefit held across age, sex, ethnicity and genetic risk. It was the first large American trial to show that ordinary habits, done deliberately, can protect the aging brain. (9)

As the disease progresses, developing a routine is also supportive. A predictable daily rhythm reduces the confusion and anxiety that unsettle people living with dementia, ideally making the most of mornings, when they tend to be at their sharpest. Andrea Pidgeon’s 82-year-old mother, TJ, has kept one since her diagnosis last year: up early to feed the dog, breakfast, her pills, an hour’s walk, painting, a nap when she needs one. “Routine is very important,” Pidgeon says. “It’s definitely like a prescription.”

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Physical Therapy for the Brain

The anchor of TJ’s morning comes at ten, tea in hand: a half hour session talking with an AI called Sunny. Some mornings it’s a word game, some a guessing game, some just a conversation about her dog or the boating trips she took with her father as a girl. The clinic behind Sunny, NewDays, has developed an innovative version of cognitive stimulation therapy, an established intervention for maintaining cognitive function in people living with dementia.

CST has been around for more than 25 years. It was developed in 2000 by Amy Spector, a clinical psychologist at University College London, on a plain premise: that the thinking parts of the brain, like muscles, hold up better with use. In its original form it’s a small group program for five to eight people with early to moderate dementia, meeting twice a week with trained facilitators to work through themed sessions of discussion and activity. The aim isn’t to test memory or drill facts, but to get people talking, associating and forming new thoughts in company.

The evidence is unusually good for a non-drug treatment. Studies have found that CST improves cognition, mood and quality of life, with a cognitive benefit some analyses put on a par with the cholinesterase drugs. (10) In Britain it’s written into clinical guidelines for dementia care, and a diagnosis there can come with a prescription for it. It has since been adopted in more than 30 countries.

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In the US, access to CST remains patchy. You can find CST in some memory clinics, occupational and speech-therapy departments, academic geriatric programs, adult day centres and senior-living communities, as well as charities like CaringKind. But CST is yet to become a standard of care. Researchers describe an implementation gap: it is an inexpensive, evidence-backed therapy that is still not a routine part of post-diagnostic care because it is held back by short staff time, thin training and no dependable way to bill for it. (11)

Insurance has been one barrier. Medicare will pay for cognitive rehabilitation, but not nearly enough of it. “Unfortunately Medicare doesn’t cover the number of interactions you would need with your therapist to really see the benefit,” says Daniel Kelly, who founded NewDays after watching dementia move through several members of his father’s family.

At NewDays, Kelly’s solution is to split the work between trained clinicians and AI. NewDays patients see a neuropsychologist by video every two weeks to discuss progress and set personal goals, and practice for 30-60 minutes a day with the AI at home. This ensures that the therapy is delivered at the optimal dose. Kelly likens it to “physiotherapy for your brain:” you see the cognitive therapist, then you do the exercises in between. The daily practice with Sunny, he says, stretches what Medicare covers across a whole year, rather than a handful of visits. It needs only a device and an internet connection, so patients and caregivers don’t need to drive anywhere or keep to a group’s timetable. Meanwhile the clinician relationship provides ongoing in-person support tailored to the patient’s needs, addressing both day-to-day functional problems and the mental health concerns that many patients experience.

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Whether it works as well as the original in-person experience isn’t yet settled but early indications hold promise. Last week, NewDays presented early results at the Alzheimer’s Association International Conference: based on a case series of two dozen patients over six months, patients preserved the equivalent of a year and half of cognitive function, when without intervention, they would have been expected to lose it. (12) A randomised trial with Kaiser Permanente, following more than two hundred patients, is under way. (13) For TJ the change was quick. Her neurologist noticed she was more talkative and active; she took up daily painting and started FaceTiming her beloved grandchildren again. “It’s definitely extended her life,” her daughter says.

Hillary Raskin, who participated in a CST group with CaringKind, said that the therapy was one of the things that answered her call. Her request was simple. “Help me adjust to my today,” she said. “I’ve really started to care about my today.”

In next week’s Aging Almanac, we’ll turn to how caregivers can seek out support to help them adjust to their loved one’s evolving circumstances.

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Other articles in this series on the early stages of dementia:

People consistently rank dementia ahead of cancer and heart disease as the condition of old age that they dread the most, (1) a fear rooted in the threat it poses to identity and independence, and the caregiving burden it places on families. At the same time, two-thirds of people still believe that dementia is a normal part of aging — it’s not — thus overestimating the odds of developing it and misunderstanding the different symptoms it may produce. (2)

The fear is not unreasonable, but the numbers are often misread: at any given time about one in ten Americans over 65 is living with dementia, currently more than six million people, and another fifth have the milder cognitive impairment that can precede it. (3) However, the risk climbs with age: roughly doubling after 80, meaning that most people in their late sixties and seventies do not have dementia, and about a third of those over 85 do. (4) While dementia is not a normal part of aging, it is a common part of growing old.

“I took a long time to accept that I needed to see a doctor — it took my children to push me forward, and thank God they did, because it came just at the right time in my life.”

Fear and confusion breed stigma and avoidance: when people are afraid of the label and what it might say about them, they put off seeing a doctor that could rule out a treatable cause, or miss the window when treatment and/or lifestyle changes could do the most good. Hillary Raskin, a photojournalist by trade, experienced about five years of symptoms before she was diagnosed: “I took a long time to accept that I needed to see a doctor — it took my children to push me forward, and thank God they did, because it came just at the right time in my life.”

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What Causes Dementia?

Dementia is not in fact a “diagnosis” because it is not a single disease, it’s a syndrome — a collection of symptoms that consistently appear together. The word “dementia” is an umbrella term that describes a decline in memory, thinking, language or judgment that is severe enough to interfere with daily life, caused by physical changes in the brain. Those physical changes can be caused by a great range of progressive diseases, and they can manifest a variety of different symptoms. The four most common conditions account for the large majority of dementia cases in the United States, but more than a 100 conditions can cause it. (5)

“Dementia is a category. It’s not one diagnosis,” explains Dr Jason Cohen, neurologist at Montefiore Medical Center in New York. “It’s a very helpful shorthand. But then the next question is always, what type?”

The four most common types of dementia are Alzheimer’s Disease, vascular dementia, Lewy body dementia, and fronto-temporal dementia.

1. Alzheimer’s Disease is the most common form of dementia, responsible for an estimated 60 to 80 per cent of cases. It is characterized by the presence of two abnormal proteins in the brain, amyloid plaques and tau tangles, and it often first presents as short-term memory loss, the inability to retain memories of recent experiences or information.

2. Vascular dementia, about 10 per cent of cases, is caused by strokes or reduced blood flow to the brain, and tends to emerge in the form of slowed thinking and trouble with planning and judgement, rather than through declining memory.

3. Lewy body dementia, caused by deposits of a protein called alpha-synuclein, can bring visual hallucinations, changes in movement, and sharp swings in alertness. The same protein drives the dementia that often develops later in Parkinson’s disease; the two are distinguished mainly by whether thinking or movement fails first.

4. Fronto-temporal dementia, caused by other proteins collecting in the frontal and temporal lobes of the brain, tends to strike younger patients in the fifties and sixties, and alters personality, behaviour or language before it affects memory. It is often initially misdiagnosed as a psychiatric illness.

“If it’s not one or the other, often it’s one and the other.”

Many older patients have more than one of these conditions at once, most often Alzheimer’s and vascular disease together, and this can make an accurate diagnosis more difficult. One study found individual patients carrying as many as six different pathologies. (6). “If it’s not one or the other, often it’s one and the other,” says Dr Cohen.

At the same time, some of what looks like dementia is not, or is not permanent: a thyroid disorder, a vitamin B12 deficiency, a drug interaction, or even depression can each produce the same fog, and each can be treated. When the cause is one of the diseases that can’t be reversed, knowing which one or which combination, and knowing it early, can help patients and their families implement lifestyle changes, assess any treatment options, and prepare for the future.

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Recognising the Signs

Everyone’s memory lapses and thinking slows with age, so some of the early changes of dementia can be the hardest to spot. One useful question is what you or your loved one are forgetting, and how often. Mislaying your keys and retracing your steps to find them is ordinary; picking them up and not knowing what they are for is not. Blanking on a name and recovering it an hour later is normal; repeatedly losing your way home on a familiar route is not.

The Alzheimer’s Association lists several early signs of dementia, and memory is only one. Other signs include trouble following a recipe or keeping up with the bills, consistently losing the thread of a conversation or searching for words, confusion about the date or the season, and putting things in odd places. You may also notice poor judgement with money or safety, withdrawal from work and social settings, shifts in mood or personality, and problems with vision and spatial sense, such as misjudging a kerb or a doorway. (7) Any one of these, now and then, is not concerning, but if you are experiencing several together, or one that keeps worsening, it is a reason to see a doctor.

Only an estimated 8 per cent of people with the mild cognitive impairment that precedes dementia are ever formally diagnosed.

Naming the signs is easier than acting on them, of course. Only an estimated 8 per cent of people with the mild cognitive impairment that precedes dementia are ever formally diagnosed. (8) People often wait because they don’t want to recognize or admit to the symptoms, but also out of fear of receiving a diagnosis, and a stigma attached to those living with cognitive changes. As one person living with dementia put it to me: “I know it’s called dementia, but I don’t like that term, because I’m not demented. My mind is not demented.”

But there is a strong and practical case for seeing a neurologist at the earliest juncture: a doctor can rule out the treatable causes, and in addition to the opportunity to make supportive lifestyle changes, the newest Alzheimer’s drugs work only in early-stage disease, so timing can decide what options are still on the table. Research has now established that the onset of dementia symptoms begins around 15-20 years after the beginning of physical changes in the brain, meaning that early detection could be life-changing if it can slow the progress of the disease. (9)

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Diagnosis: What to Expect

Diagnosis starts with a detailed medical history. Doctors want an account from both the patient and someone close to them, because, as Dr Cohen puts it, “the person with a memory problem might not remember all the parts of it.” The timeline is as important as the symptoms: a slow slide over four years suggests something different to a change that seemed to begin one bad Thanksgiving. From there the standard workup includes: tests of memory and thinking, a neurological exam, blood tests to rule out the reversible causes, and at least one scan of the brain, usually an MRI.

Confirming Alzheimer’s Disease also typically requires an amyloid PET scan or a spinal tap to sample the fluid around the brain, both of which are accurate, but they are costly or invasive. A newer option is a blood test that was FDA-approved in May 2025. The blood test measures a ratio of two proteins that tracks the amyloid build-up in the brain, a biomarker that can help confirm the presence of Alzheimer’s Disease. The blood test is very accurate: it matches PET scans and spinal-fluid results about 92 per cent of the time for positive cases and 97 per cent for negative ones, so in theory, many patients could now skip the scan. The test is cleared only for people who already have symptoms, not as a screen for the worried well, and a specialist still confirms the diagnosis before treatment. (10).

“The science is advancing more rapidly than the insurance coverage, which is still quite spotty.”

Advances in blood testing and biomarkers for Alzheimer’s Disease are “game changers,” says Dr Tobe Banc, Medical Director of the Northwell Aging Institute in New York. However, the tests are not yet readily available outside of large research institutions or academic medical centers, while many clinicians are still learning how to use them and relying on PET scans as the fall back. Dr Banc warns that at the same time, “the science is advancing more rapidly than the insurance coverage, which is still quite spotty.” She is hopeful that the progress of disease-modifying drugs will fuel better coverage of diagnostic tests in the near future.

Further tests are being developed for the other types of dementia. The biggest recent shift is in testing for Lewy body dementia and Parkinson’s dementia, both caused by a protein called alpha-synuclein. A test known as a “seed-amplification assay” can now accurately detect abnormal forms of the protein in spinal fluid and increasingly in a small skin biopsy, allowing for earlier detection of the diseases. (11) Reliable blood tests for fronto-temporal dementia, and for the specific proteins related to it, are still mostly confined to research. If there is a family history of front-temporal dementia, genetic testing can help to establish a diagnosis, with between 10 and 30 per cent of cases linked to specific gene mutations.

The standard tests can still miss early disease, however, with many patients like Raskin waiting years to get a confirmed diagnosis: “When I first went to a memory specialist, he told me nothing appeared concerning. The message was: you’re fine, eat well and come back in a year. I waited too long, and now I feel I’ve lost some important years.”

A diagnosis is a starting point, not an end point, and the sooner it comes the more options are on the table. Those options — the treatments, their trade-offs, and the daily changes that can help maintain function — are where next week’s Aging Almanac will pick up.

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I’m sharing three books I’ve read recently and can wholeheartedly recommend: Julian Barnes’s novel Departure(s), Jerald Winakur’s memoir Memory Lessons, and Ezekiel Emanuel’s non-fiction guide to living a long and healthy life, Eat Your Ice Cream. Each comes at the subject of aging from a different direction: Barnes is a writer composing his own ending, Winakur a geriatrician watching the system fail the old, and Emanuel a doctor and public health expert cutting through the wellness noise to what actually helps. Together they turn out to make a surprisingly good conversation.

Two caveats. First, I won’t only write about new releases: Winakur’s memoir came out in 2009, but I was inspired to reread and it resonated in a new way. And second, I may write about books, film, television or theater, and they will always be connected to aging in some way. Whatever I share here will be something I’ve actually read or seen and believe is worth your time. And since this is an experiment, I’d love to hear from you. If you enjoy it, let me know in the comments and I will make it an occasional feature. Better still, if you read and enjoyed a book about aging, retirement, caregiving, illness, memory, or the art of growing older, please share the title. I’m always hunting for my next one and I suspect your fellow readers are too.

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Departure(s), by Julian Barnes

Julian Barnes turned eighty this past January, and to mark the milestone, the Booker Prize-winning author gave us what he swears will be his final book. It is a slim volume that you can finish in an afternoon, yet it lingers far longer than its page count might suggest. In Departure(s), Barnes playfully blends fiction, memoir, and essay until you stop trying to sort out which is which. The narrator is a writer named Julian, living in north London, managing an incurable blood cancer diagnosed in 2020, and mourning the wife he lost years earlier to a brain tumor while now settled in a new relationship. The autobiography is barely disguised, and Barnes knows it: he all but dares us to check the facts ourselves.

The story Barnes eventually tells, after confessing that he promised the protagonists never to tell it, belongs to two friends he first introduced at Oxford in the 1960s. Stephen and Jean fall in love, drift apart after university, and reunite some forty years later to try again. What follows is tender and merciless in equal measure: late-life love here is not a consolation prize but a genuine second chance, with its own betrayals and disappointments.

For readers of this newsletter, Departure(s) earns its place on the summer reading pile for what it reveals about the second half of life. With some amusing digressions into the writings of Proust and other French writers, Barnes is interested in how memory thins as we age: how lived experience consolidates first into anecdote, then into something we are no longer certain happened at all, or if it did, whether we were as central to the story as we perceived ourselves to be. He is honest about the body’s slow betrayals, and clear-eyed about death without ever turning grim. When his narrator shrugs that his blood cancer is “incurable yet manageable” and adds that this rather sounds like life itself, Barnes hands his aging reader a small piece of wisdom, packaged in smart comedic timing.

My favorite character in the book is Jimmy, an elderly Jack Russell who is enviably unburdened by any knowledge of his own mortality. The dog becomes a small reproach for the rest of us, who carry the awareness of our endings around like so much luggage. Barnes writes, “We all have different attitudes to aging and its terminus, from blank denial to insistent, life-smothering over-attentiveness.” That, finally, is the book’s subject: not dying, but the particular human work of knowing and accepting that it’s coming and deciding how to spend whatever time is left.

It is a strange thing to call a book about last things a pleasure, but this one is. After 27 novels over more than four decades, Barnes is leaving on his own terms, wit intact, and there is a lesson in that for any of us thinking about how we’d like to leave the party.

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Memory Lessons: A Doctor’s Story, by Jerald Winakur

I came back to this 2009 memoir after reading Dr Jerald Winakur’s March essay in Health Affairs, “A Geriatric Geriatrician Speaks Out.” (1) Now 77 and retired for several years, he describes how he still fields midnight calls from frightened families and visits patients with the cracked leather doctor’s bag he has carried since medical school. The title is more than wordplay: he has now joined the demographic he spent a career serving. Rereading his memoir with that essay in mind, I found it had aged into something more urgent than it was the first time around.

Winakur practiced internal and geriatric medicine in San Antonio for 36 years, much of it among the “oldest old” — patients past eighty-five, the fastest-growing segment of American society. He spent a career mapping how the body ages and ultimately fails and yet, as he writes, watching his own father slide into Alzheimer’s Disease was “no easier for me than for anyone.” That admission is the engine of the book: all the training in the world does not spare a son from the helplessness, guilt, and flashes of anger that caregiving exacts.

His father Leonard was a gifted artist whose Depression-era family steered him into running a Baltimore pawnshop, and an avid birder who passed that love on to his son. As Leonard descends into dementia, his wife serves as primary caregiver, and Winakur shuttles between two roles that he cannot reconcile: the doctor who knows precisely what is coming, and the son who cannot stop it.

This is the rare caregiving book that withholds any easy reassurances. Winakur is unsparing about the hard machinery around aging: managed care, the question of whether to prolong life at any cost, and the long shadow cast by test cases around aggressive treatment at the end of life. He delves into how our healthcare system rewards procedures over presence: how the cognitive work of an unhurried doctor at the bedside, using the judgment and patience that aging patients need most, is the very thing our payment system rewards least. Geriatrics, he points out, is the one subspecialty where the extra years of training actually lower your pay.

Seventeen years after the book was published, Winakur’s warning is even starker. The ranks of practicing geriatricians have stalled near 7,000 even as the over-75 population is set to grow by more than half by 2036. He ends the Health Affairs essay by explaining that this is why, retired and 77, he still picks up the phone and it is “why I still fetch my bag and go.”

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Eat Your Ice Cream: Six Simple Rules for a Long and Healthy Life, by Ezekiel J. Emanuel

The cultural obsession with longevity has become a din of supplement ads, biohacking guides, and billionaire wellness gurus. Dr. Ezekiel Emanuel’s new book cuts through the noise with straight-forward advice and good humour. Emanuel is an oncologist and bioethicist, one of the architects of the Affordable Care Act, and he has written a wellness book whose central message is to stop obsessing over wellness. He originally wanted to call it Don’t Be a Schmuck; the publisher talked him into the more light-hearted title, but the bracing, no-nonsense spirit of that first idea runs through every page.

Emanuel sets out to help readers tell sound health advice from “the speculative, deceptive, and just plain stupid.” He takes a scalpel to all the extreme regimens, unproven supplements, and bio-hacking he considers not just useless but occasionally dangerous. He is openly contemptuous of the outlive-at-all-costs school of thinking that treats life as a contest to be the last one standing, and he has no patience for the wellness-industrial complex that sells you complicated remedies you don’t need. But he doesn’t only clear the ground; he builds on it. In prose that is easy and often funny to read, he lays out clear, evidence-backed habits that anyone can actually adopt: sensible, low-effort steps that make the most difference to your health. For an audience bombarded by targeted ads for anti-aging miracles, this is a genuine public service.

The first chapter — and my favourite — got the book’s original title: “Don’t Be a Schmuck,” which is exactly as good as it sounds. Boiled down, it is a plea not to do the risky, stupid things you already know are bad for you, like smoking, heavy drinking, and skipping your vaccines, and not to be fooled by the snake-oil salesmen. It may sound obvious, but most of what actually lengthens a life is unglamorous and nearly free, while the costly, complicated stuff is where you will find most of the quacks. The other five rules, in his words: talk to people (cultivate friends and family); expand your mind (stay mentally sharp); eat your ice cream (eat and drink well); move it (exercise regularly); and sleep like a baby (get the rest you need). Fittingly, the book ends on its mirror image, an afterword called “Be a Mensch” — a reminder that a long life is only worth wanting if it’s lived with purpose.

Emanuel argues that a wellness regime built on constant self-deprivation never survives the years it would need to pay off; so the habits have to be ones you enjoy. This is why the occasional bowl of ice cream stays on the menu. His single biggest piece of advice for living long and well is not a molecule or a metric but social connection: building and keeping your relationships. For readers thinking about how they want to age, Eat Your Ice Cream is permission to put down the tracker, ignore the gurus, and get on with living. Wellness, he insists, should be the invisible background of a good life, not its exhausting main event.

In next week’s Aging Almanac, we turn to dementia, opening a multi-part series on the diagnosis so many of us dread as we grow older.

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Public Comment Period on White House Proposal Is Open Until July 13

The lamed vavnik tradition is one way to reframe a question that many of us carry more heavily as we age: Does what I do still matter? The legend’s answer is radical in its ordinariness. Righteousness isn’t reserved for the famous, the powerful, or the young and able-bodied; there is nothing in the story that suggests that good acts diminish with grey hair or a slower step. If anything, the hidden righteous are defined by exactly the qualities a long life can deepen—steadiness, humility, attention to others. This raises the possibility that living with meaning and purpose is not something we age out of, but something we can grow more capable of.

And it turns out this isn’t only a matter of faith or sentiment, but it’s also a healthy way to live. A growing body of research suggests that how we think about aging—whether we see later life as a season of decline or one of continued meaning—measurably shapes how we actually age, from memory to mobility to how many years we live. In a recent study of more than 11,000 adults over the age of 65, Yale epidemiologist Becca Levy found that half of the sample showed measurable improvement in memory, cognition, or walking speed over 12 years of data, and that those holding more positive age beliefs at baseline were significantly more likely to improve, after controlling for age, sex, education, depression, and chronic disease. (1)

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A few weeks ago, I met with Paul Rosofsky, a 92-year old man who is committed to purposeful living even in the face of enormous adversity. Paralyzed for the last four years after a spinal cord injury, Rosofsky has also survived sepsis, endocarditis, a run of hospital stays for infections and bouts of pneumonia, the amputation of his right leg, and the week I spoke to him, he was three days from surgery to amputate the other. What struck me, over more than an hour, was not the catalogue of medical events but his unshakeable calm. People who know Rosofsky describe him as relentlessly positive, and I wanted to know where his sense of purpose comes from and how it survives contact with real pain. His answer was plain. “The sun comes up tomorrow for me. God has provided me with a new day. I choose to make the most of that day. Whether I have my legs or not, I can determine what kind of day it’s going to be.”

His purpose is three-fold: family, faith, and making a contribution to the world. He talks about his daughters, sons-in-law, and grandsons as his legacy, the only kind that counts. “It’s not the plaques on the wall,” he says, “it’s the people you’ve touched.” His faith is not a recent consolation but a lifelong fixture, a sense that he was given gifts and owes the world something in return. And he is determined, once he heals, to return to volunteering on the palliative care ward of his local hospital, partly because he has spotted a gap in services for disabled people who are not veterans, and partly for a blunter reason. “The more you give, the more you get back,” he says. “Volunteering is what’s going to keep me alive.”

What follows are highlights from our conversation.

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Q: When you look back over the last several years, what stands out as the turning point when life changed dramatically?

The defining moment was my spinal cord injury. I went to sleep one Friday night after attending Shabbat services, feeling completely fine. I woke up the next morning paralyzed. I couldn’t move my legs and had no idea why. It was terrifying. A surgeon told me, in the bluntest possible way, that I would never walk again and should essentially go home and die. That was the lowest point of my life. From there everything changed—my health, my independence, my daily routines. I went from being someone who drove friends to the airport just to save them a taxi fare to someone who suddenly needed help with the most basic tasks.

Q: How did you cope with the loss of independence and the need for caregivers?

It was deeply embarrassing at first. I had always been fiercely independent, and now I needed help getting dressed, washing, managing incontinence—everything. But I realized I didn’t have a choice if I wanted to live. I had to accept caregivers and a new way of being in the world. I like to say that night was the worst of my life, but it also showed me that if I could get through waking up paralyzed, I could get through anything that followed.

Q: That’s a remarkably positive outlook. Have you always approached life that way, or has it developed in response to these challenges?

It’s always been there. For me, “the sun comes up tomorrow.” I could have thrown in the towel a long time ago, but I refuse. I believe each new day is a gift. Whether I have my legs or not, I can decide what kind of day I’m going to have. That doesn’t mean the days are easy. I’ve had hospital stays, pain, bad nurses, bureaucracy, but I hold on to the idea that “this too shall pass” and ask myself, “What will you do with the day you’ve been given?”

Q: You speak often about God and spirituality. How have the last few years affected your faith?

They haven’t really changed it; they’ve confirmed it. I’ve always felt I have a relationship with God. I believe God has given me great gifts, and with them comes responsibility—to make God’s world a better place. I see life as a struggle between the forces of good and the forces of evil, and I know which side I want to stand on. I also believe we’re more than our bodies. The body dies, but the living soul—the part given to us by God—does not, even if I don’t know exactly what happens next. I’m very open about the fact that I think about death and welcome it when the time comes. It’s the “last great unknown.” I’m curious: Is there something more, or is it simply nothingness? Either way, I won’t be afraid. What I hope for is that what is truly alive in me continues.

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Q: You’re about to have another major surgery—losing your left leg. How are you thinking about the future?

I’m going into surgery resigned but not defeated. First, I want to heal and see how I can function with no legs. After that, I plan to return to volunteering in palliative care. That’s not just “giving” to others; it’s what keeps me alive. The more you give, the more you get back. I see a gap in care for people with disabilities who aren’t veterans—there’s a lot for veterans, but very little for others. I’d like to have a hand in changing that, even if only in a small way.

Q: Family and relationships come up again and again when you talk about your life. What do they mean to you now?

They’re everything. My daughters, my sons‑in‑law, my grandsons—they are my legacy. It’s not plaques on the wall that matter; it’s the people you’ve touched. I look at my daughters and see strong, capable women who will be fine when I’m gone. That gives me tremendous peace. At the same time, I know my death will leave a hole, especially for [my daughter] Meryl, because we’ve had such an unusually close relationship and she has taken on so much of my care and advocacy. I also feel the presence of my late wife, Dena, very strongly in our home. People have told me I should move to a facility, but I always say I’m never leaving this house. Her spirit is here. This house has a spiritual warmth; people feel it when they walk in. That’s where I want to live out my days.

Q: You received a Lamed Vavnik award from your synagogue, Temple Shalom. How has that shaped your sense of purpose?

The award is based on the Jewish legend of the lamed‑vavniks, thirty-six righteous people hidden in the world, doing God’s work without knowing who they are. Two of the other recipients were giants of community service. To have my name mentioned alongside theirs was profoundly humbling. I don’t believe I’m one of those hidden righteous people, but seeing that trophy reminds me of my responsibility. People think I can live up to that standard; I don’t want to let them, or myself, down.

Q: Looking back across your life—from a difficult childhood to this chapter of disability and illness—how do you see your journey?

My childhood was hard: poverty, mistreatment, a domineering stepfather, a mother who often saw the world through a lens of misfortune. You wouldn’t guess that, looking at me now. But those experiences forged who I became. Very early on, when I was just a schoolboy, I answered a question about what I wanted from life by saying, “A wife who loves me and children who respect me.” I probably didn’t understand then what I was saying—but I do now. I had a wife who loved me with every fiber of her being and three daughters who love and respect me. Add my sons‑in‑law and grandchildren, and I can honestly say I’ve had an embarrassment of riches. I feel I’ve accomplished everything I set out to do. I’m ready, when the time comes, to leave nothing on the table.

Q: And between now and that time?

Between now and then, I intend to use every bit of “gas in the tank” to do God’s work—to make the world a little better, to keep loving my family, to keep showing others that even when “shit happens,” they can still live meaningfully. If I can be an inspiration to even one person, that will be enough.

Rosofsky’s surgery was successful, but in the weeks that followed, he was again hospitalized after contracting pneumonia. He has now made a good recovery and today, July 2, he celebrates his 92^nd birthday. Happy Birthday Paul!

— Previously published on Clal’s Wisdom Daily —

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Public Comment Period on White House Proposal Is Open Until July 13

Other articles in this series on Wellness for Longevity:

The results were surprising. When researchers examined the donated brains, they found something that should have been impossible. A number of sisters who had remained lucid, witty, and engaged until death turned out to have brains riddled with the plaques and tangles of advanced Alzheimer’s disease. By the physical evidence, they should have been profoundly impaired, but they weren’t. Something had protected their functioning even as the physical manifestations of the disease advanced, a buffer that scientists came to call “cognitive reserve.”

One of the building blocks for the cognitive reserve appeared to be related to education and intellect: nuns who had more years of advanced education were much less likely to develop dementia decades later. But there was another thread woven through every life in the nun study: their days were structured around belonging. These women lived inside a dense web of steady and consistent relationships: praying together, eating together, teaching, caring for one another in sickness and old age, rarely if ever truly alone. (1)

A growing body of research now places social connection alongside diet, exercise, and sleep as a genuine determinant of how long and how well we live, and chronic loneliness alongside smoking as a comparable risk to the body. In giving science their minds, the Sisters of Notre Dame helped to establish that the company we keep may be one of the most powerful medicines we have.

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Wired to Belong: The Biology of Loneliness

To understand why social connection works on us so powerfully and conversely, why loneliness does such harm, it helps to remember what kind of creatures we are. For nearly all of human history, survival was a group project. Our ancestors hunted, foraged, raised children, and fended off predators in small bands, from which being cast out was effectively a death sentence. Over countless generations, that risk assessment wrote itself into our biology, leaving us with brains and bodies finely tuned to seek the safety of the group. In the framing of the late neuroscientist John Cacioppo, loneliness is one of the body’s alert systems, the social equivalent of hunger, thirst or pain. Much like hunger signals an empty stomach or thirst a parched body, the feeling of loneliness is a physiological warning that something essential is missing, a prod designed by evolution to send us back toward one another. (2)

Loneliness is a psychosocial stress that impacts our physiology through elevated cortisol and inflammation.

In the short term, the drive for connection is meant to be useful, even lifesaving, but when loneliness becomes chronic it can be corrosive. Perceived isolation switches on the body’s stress systems, raising cortisol and producing low-grade inflammation, prompting the immune system to deprioritize antiviral defense. Steven Crane, behavioral sciences researcher at Stanford University says: “Loneliness is a psychosocial stress that impacts our physiology through elevated cortisol and inflammation. This leads to heart disease, it disrupts our sleep, it has mental health impacts, and taken together, these all cascade into disease states that can shorten our lives.”

The mortality risk of weak social ties is roughly comparable to smoking fifteen cigarettes a day.

In the forty years since the Nun Study, the evidence for the importance of social connection has mounted. According to the research of Julianne Holt-Lunstad, professor of psychology and neuroscience at Brigham Young University, the mortality risk of weak social ties is roughly comparable to smoking fifteen cigarettes a day or being an alcoholic, and exceeds the health risks associated with obesity. (3) Holt-Lunstad pooled 70 longitudinal studies of more than 3.4 million people and found that social isolation raised the risk of dying over the study period by almost a third, an effect larger than physical inactivity. (4) In 2023, the US Surgeon General Vivek Murthy released an advisory report warning that poor social connection raises the risk of heart disease by 29 per cent, stroke by 32 per cent, and the risk of dementia in older adults by about half. (5)

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Alone Is Not Lonely: Defining Loneliness

Loneliness is not the same as being alone: solitude is the state of being alone, while loneliness is a feeling. The feeling is subjective and determined by the gap between the connection you have and the connection you want. Psychologist Paul Bloom describes loneliness as the felt absence of love, understanding and being needed. You may have all three while alone on a hillside; you may have none while in a crowded family kitchen.

Loneliness is the felt absence of love, understanding and being needed.

Loneliness also comes in a few varieties. Sociologist Robert Weiss argued that loneliness comes in two distinct forms, each arising from a different kind of missing relationship. The first is emotional loneliness, which stems from the absence of a single close, intimate attachment - the kind of bond you have with a spouse, partner, or sometimes a parent or child. The second kind is social loneliness, which comes from the absence of an engaging social network - a community of peers, friends or acquaintances who share your interests and concerns. (7) Building on Weiss’s work, Cacioppo and psychologist Louise Hawkley later described a third kind: collective loneliness - the absence of belonging to a group or social entity larger than the individual, like a faith, a team or a nation. (8) The distinctions are helpful, because each kind of loneliness needs a different kind of repair.

Take Patricia, for example. Patricia is in her late seventies and has advanced Parkinson’s Disease. She is almost entirely home-bound in a small apartment she shares with a sister, with whom she has a strained relationship, and a lodger she rarely sees. A kind home health aide comes for a few hours on weekdays, but the aide speaks only broken English; their exchanges run to small courtesies and simple instructions. Phone calls were once her lifeline; but the tremors and rigidity of her disease now make the handset hard to hold and the touchscreen increasingly difficult to work. She sometimes goes four or five days without a real conversation, so when she receives a visit from a local volunteer organization she lights up for an hour or two. In this framework, a volunteer’s visit briefly assuages Patricia’s social loneliness and leaves the emotional and collective kinds untouched.

Patricia is an acute version of an ordinary problem: about half of all US adults report feeling lonely. The Surgeon General’s 2023 report warned of an “epidemic” of loneliness which was accelerated by the forced isolation of the COVID-19 pandemic. (9) Perhaps surprisingly, however, it is not the old who report the most loneliness but the young: in survey after survey, adults in the Gen Z and Millennial range describe more loneliness than their parents and grandparents, even though they are the most digitally connected generation in history. (10) Among people aged 65 and older the picture is comparatively reassuring: in one large national poll, adults in their late sixties and seventies consistently reported less loneliness and isolation than those aged 50 to 64. (11) But that headline hides the people for whom loneliness may have some of the most serious health consequences. Loneliness tends to climb again past 70, when widowhood, the death of friends, failing health, lost mobility, and fading hearing and sight can strip away relationships, and make new connections harder to form.

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The Rise of Social Prescribing

If those specific losses can’t always be reversed, new connections can be built. Many older adults have heard advice to join a club or group exercise class, start a new hobby, call a friend, or volunteer, particularly in the years after retirement when social circles can shift dramatically. A growing movement in medicine argues that rebuilding connections is a legitimate job for a doctor, through a practice that has become known as “social prescribing.” The idea is that when what ails a patient is isolation rather than illness, a clinician should be able to prescribe connection itself.

Doctors didn’t simply ask patients what was the matter with them, but what mattered to them.

The approach took root in East London in the late 1990s, where community organizers co-located a doctor’s surgery inside a local community centre so that patients could be referred to help with the social and economic troubles that were making them unwell. The shift was as much philosophical as practical: doctors didn’t simply ask patients what was the matter with them, but what mattered to them. A new kind of staffer, the “link worker,” would then connect a patient to the ordinary stuff of community life: a walking group, an art class, a gardening plot, a weekly befriending visit. The model, tested in other British experiments, proved durable enough that the UK’s National Health Service folded it into national policy (12) and the thinking has since crossed the Atlantic, surfacing in American clinics, senior centers, and nonprofits.

America’s fragmented health system has no National Health Service to plug a link worker into, so the British model has arrived in pieces. Massachusetts launched the first statewide cultural-prescribing pilot, CultureRx, in 2020, letting providers hand patients a slip for free museum admission; a Tufts-led evaluation found patients reported improved wellbeing and providers were glad to have something concrete to offer. (13) Other state initiatives include the Wisconsin Coalition for Social Connection and the Connecticut Collaborative to End Loneliness. Insurers are also experimenting: CareMore’s Togetherness Program, the first to treat loneliness as a diagnosable condition, reported a 57 per cent rise in exercise program participation and a 3.3 per cent fall in emergency department use. There are a host of non-profits developing programs to deliver “doses” of social connection to the lonely, with others developing tools to educate and support clinicians about effective strategies, including Social Prescribing USA, founded in 2022 to coordinate pilots across all 50 states.

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Digital Companions: Can a ChatBot Cure Loneliness?

Connection can be labor-intensive and expensive to deliver in person, however. There are never enough volunteers, link workers, or visiting hours to go around, and the lonely older adults who need them most — homebound adults like Patricia — are the hardest and costliest to reach. Technology has stepped in with a very different kind of remedy: companionship produced by machine. A new class of AI companions is aimed squarely at the most isolated: seniors already on the caseloads of aging-services agencies, people living alone with little daily contact, people in senior living with difficulty leaving their rooms or interacting with others, and those living with dementia.

The most prominent example in the US is ElliQ, a desk-lamp-sized device with a swiveling “head” and a touchscreen, built by the Israeli firm Intuition Robotics. It initiates conversation rather than waiting to be addressed, suggests activities, remembers what users tell it, leads relaxation and physical-activity exercises, and delivers medication reminders; it also tells jokes, plays music, reads books, and offers virtual tours and trips. One core advantage of these companions is their constant presence and abiding interest in the user: a chatbot never grows impatient waiting for you to finish your story so it can tell its own.

New York’s State Office for the Aging began providing ElliQ free to isolated seniors, and after placing the device with more than 800 older adults it reported a striking 95 per cent reduction in loneliness and very high engagement—with users interacting with it some thirty times a day, six days a week. (14) The same agency also distributes life-like robotic cats and dogs; these animatronic companion pets are credited with cutting self-reported loneliness by about 70 per cent, and such devices are used heavily in dementia care, where conversation is harder and a creature that purrs and responds to touch can soothe and engage. (15)

One caution worth noting is that these numbers come largely from the programs and the companies that make the devices, and independent researchers note there is still very little solid evidence that talking AI companions actually reduce loneliness rather than simply occupying the time. A four-week randomised trial by MIT Media Lab and OpenAI, tracking 981 people across more than 300,000 messages with an AI companion, found that the heaviest users reported higher loneliness, less real-world socialising and greater emotional dependence on the bot. However, participants on average ended up less lonely than they started, and the trial never randomised how much anyone used the chatbot, so whether heavy use deepens isolation or the already-isolated simply lean on it harder remains unsettled. (16)

The advent of AI companions has also brought us to a new frontier of nagging ethical questions, one of which is equality of access - who can get the companions and who cannot, or perhaps more meaningfully, who will get human connection while others get the bots? If a robot is what a strained public system can afford to send its poorest and most isolated elders, while the families who can pay still secure human aides and visits, a device meant to relieve loneliness may harden a two-tier arrangement of who gets people and who gets machines. There are privacy concerns as well, since these are always-listening devices placed in the homes of vulnerable users and operated by private companies with commercial stakes in the intimate data they collect.

But perhaps the most fundamental question concerns honesty. A machine that says “I’ve missed you” has missed nothing; whatever warmth the user feels flows toward a machine that cannot feel it back. Chatbots are also trained by human feedback to please, which makes them sycophantic. Philosophers such as Robert Sparrow have argued that the comfort these devices offer depends on deceiving a person into believing they have a relationship with the device, and that this should not be encouraged. If loneliness is the signal that a bond needs repair, then a sycophantic AI may simply be a painkiller that silences the signal without treating the underlying lack of human connection. Bloom makes a generational exception for these concerns: for a ninety-year-old in an institution, with no living friends and dementia making conversation impossible, a warm AI is a godsend. For someone like Patricia, alone but still capable of real connection, an AI companion that could talk on her schedule could have meaningful benefits, especially if the bot can prompt and facilitate greater human connection.

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A Lifetime of Friendships

The overwhelming evidence is that to live a long and healthy life, we should tend our relationships with the same seriousness we should give our diet, sleep and exercise. The longest study of adult life ever conducted began in 1938. Researchers at Harvard began following 724 men (Harvard sophomores alongside boys from the poorest districts of Boston) and later tracked their wives and children, for more than eight decades. They measured income, cholesterol, drinking, exercise and IQ. According to the observational study’s directors George Vaillant and Robert Waldinger, the best predictor of who would stay healthy into old age was none of these; it was the warmth of people’s relationships. Those most satisfied with their relationships at fifty turned out to be the healthiest at eighty, and those ties predicted long life better than social class, genes or cholesterol. (17)

In next week’s Aging Almanac, we’ll meet Paul Rosofsky, who at 91 years young, is a remarkable example of how mindset, faith and purpose can sustain us even in enormous adversity.

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Public Comment Period on White House Proposal Is Open Until July 13

Other articles in this series on Wellness for Longevity:

The proposed changes are of critical importance because the grant-making process decides which questions are asked about our health and the way we deliver care. Whether the next cancer drug gets tested, whether anyone studies what actually works for the prevention of Alzheimer’s and other dementias, whether there is evidence behind the Medicare decisions that will shape your or your parents’ last decade: nearly all of it is paid for with federal money, and the proposed rules will change how the decisions are made.

Until now, political appointees have had wide-ranging authority to administer agency programs and set priorities according to the administration’s policy agenda, but they did not do political evaluations of individual studies. Under the proposed rules, political appointees would get final approval over which studies the government funds, and the scientists who currently make that call through peer review would be demoted to advisers. The proposal gave the public 45 days to comment, an unusually short window relative to other proposals of this significance and complexity, and the rule is written to take effect at the start of the 2027 fiscal year on October 1, 2026.

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The administration says that the measures are necessary to improve “transparency, accountability, and oversight” for how federal grants are awarded, and to prevent “wasteful spending” and “misuse or mismanagement of federal funds.” The document points to spending during the Biden presidency, when the Trump administration claims federal awards were often used to promote a “woke” policy agenda. The proposed changes to the grant-making process come on the heels of sharp cuts to the NIH budget, workforce and existing grants since President Trump took office in January 2025.

Scientists, public health researchers and clinicians have expressed alarm about the dismantling of a grant-making process designed for the slow, long-horizon work of scientific questions that may not fit a specific political agenda. “In science, we are planning for the patients we will be treating in 10 or 15 years, but politics operates in two- and four-year cycles,” said Dr. R. Sean Morrison, Chair of the Brookdale Department of Geriatrics and Palliative Medicine at the Mount Sinai Health System in New York. “The treatments that will benefit my future patients require research that has to start now, and it can’t be subject to the whims of whoever is in office.”

“The treatments that will benefit my future patients require research that has to start now, and it can’t be subject to the whims of whoever is in office.”

The proposal has three teeth. First, political appointees will have the ability to override scientific peer review scores for proposed research using their own “independent judgment,” based on a number of broad criteria. Appointees are instructed to prioritize awards that “demonstrably advance the President’s policy priorities,” while vetoing research awards that may be used to “fund, promote, encourage, subsidize or facilitate” any of the following: DEI policies or practices, “gender ideology,” or any other initiatives that “promote anti-American values.” Second, existing grants can be ended at will, at the agency’s discretion. And third, new limits would restrict international collaboration, conference travel and even federal support for publishing results.

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The wrong hands

The United States has built the world’s most respected scientific research enterprise on the idea that federal dollars should fund the best science, as determined by independent experts in a competitive and transparent process. Scientists warn that the administration’s proposals put these decisions into inexperienced hands. Scientific peer review is considered the gold standard for these decisions because reviewers understand the underlying science and have developed expertise in designing research studies of their own. A grant application in molecular neuroscience to advance our understanding of diseases such as Alzheimer’s or Parkinsons is unreadable to anyone without years in the field. Judging whether a study’s methods are sound, its aims plausible and its budget honest is specialist work.

“No political appointee, regardless of their qualifications, can replicate that judgment.”

“The merit review system is a carefully constructed, legally and scientifically defensible process through which thousands of the nation’s best scientists evaluate the quality, innovation, and feasibility of proposed research,” wrote former NIH program officer Elizabeth Ginexi, in a public comment responding to the proposals. “No political appointee, regardless of their qualifications, can replicate that judgment.”

Researchers acknowledge that the peer review system works imperfectly. It is slow and expensive, and reviewers are notoriously inconsistent, with frequent disagreements over whether a given proposal deserves funding. The system also typically leans conservative, rewarding safe, established names and institutions over risky or innovative work, and it has never been much good at catching fraud. But its faults are visible and can be corrected by other means: scientists say that putting these decisions in the hands of political appointees is the wrong solution. As one researcher told the Aging Almanac, asking even our most earnest political appointees to approve or kill a neuroscience grant based on their “independent judgment” is akin to asking them to land a loaded jumbo jet. The instruments are unfamiliar, the stakes are other people’s lives, and good intentions are no substitute for attending flight school.

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Expertise is only half the problem; the other half is incentive. A scientist’s standing rests on getting the science right, while a political appointee’s rests on pleasing the administration that hired them. Downgrading peer review to a mere advisory process lets political appointees block grants that would normally be funded, and steer money toward projects that align with political priorities but would not survive the scrutiny of peer review. This is a concern under any administration —Democrat or Republican — as the political winds of change would direct the progress of scientific discovery.

One researcher who spoke to the Aging Almanac on condition of anonymity said that political appointees are already overriding peer review scores to block grants, before the new rules are codified. This researcher’s grant proposal -- to investigate the effect of health insurance decisions on patient outcomes — achieved a peer review score that in prior years would have virtually guaranteed funding, even when accounting for recent budget cuts and changes to accounting for multi-year grants. But the researcher was informed the study was unlikely to receive funding because the agency was deprioritizing studies on questions of “health policy.” The irony is hard to miss: an agency that exists to give policymakers the evidence to make good decisions refusing to study whether those decisions actually help patients. Ruling “health policy” off-limits does not take the politics out of science — it only guarantees that policy gets made without knowing what works.

Morrison points out that needed research is often politically unpalatable. When HIV/AIDS emerged in 1981, for example, it was concentrated in two groups with little political standing: gay men and injection drug users. While the Reagan administration’s response to the epidemic was lackluster, the NIH funded the research that identified the virus, produced the first drug to treat it, and by the mid-1990s contributed the therapy that turned a near-certain death sentence into a condition that people can manage for decades. “The science may be politically inconvenient for an administration, but that’s why the NIH exists,” says Morrison. “Their role is to work on inconvenient questions, using the best possible science, so that based on that understanding, policy makers can make good policy decisions.”

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The wrong clock

Science is slow and deliberate, meaning that scientific discovery runs on longer timelines than any political administration’s policy priorities, and political interruptions to studies in-progress can be disastrous. A dementia study enrolls patients over the course of several years, follows them for more, and only yields its answer long after the officials who approved it have moved on. Under the current proposals, grants could be ended at the agency’s discretion, at will, with no appeal beyond the political appointee who signed the order. When funding is pulled without warning, the science suffers: patients scatter, staff leave, samples spoil, and the thread connecting one year’s data to the next is cut.

The impact of at-will funding termination can be wasteful even if it is later reversed on appeal. In late March 2025 the NIH cancelled a nearly $36 million study run by Charles DeCarli, director of the Alzheimer’s Disease Research Center at UC Davis, on the grounds that it served a “DEI” agenda. The title of the study was flagged because it included the word “diverse” to describe the study population: “The Clinical Significance of Incidental White Matter Lesions on MRI Amongst a Diverse Population with Cognitive Complaints.” Roughly $10 million of the grant was unspent. DeCarli had to start dismantling the study, spread across more than 30 sites with some 1,700 participants, while his lawyers wrote an eighteen-page appeal over three weeks. Clinical partners rang hundreds of patients to tell them the study was over. Then, on 11 April, the NIH reversed itself, and the same partners had to ring the same patients back to say it was on again. (1)

The disruption to the study wasted time and money in a pattern that was repeated all over the scientific community. Hundreds of other aging research grants were similarly frozen or terminated in the Spring of 2025, only to be later reinstated by appeal. The five largest such grants were worth a total of $265 million of dementia, diabetes and Medicare research, according to data from Grant Witness.

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The human cost

The abrupt termination of research grants is not only felt by scientists conducting trials, but by the patients participating in them. According to a study published in JAMA Internal Medicine, when the NIH stopped paying for 383 studies between late February and mid-August 2025, it cut off more than 74,000 people already enrolled in them. The studies included research into cancer, heart disease and brain disease, as well as work on infectious disease, flu, pneumonia, and covid. Some participants had signed up for studies that then stalled or never opened; others lost the drug they were taking, or were left with an implanted device and no one funded to monitor it. (2)

Patients and families will also suffer from researchers’ inability to ask questions that are politically unacceptable to the administration at that moment. For example, older Black Americans develop Alzheimer’s and other dementias at roughly twice the rate of older white Americans, a gap no one has fully explained. In February 2025 the National Institute of Aging funded a $13 million study to find out why, re-interviewing the participants of the National Survey of American Life, the only nationally representative sample of Black Americans’ mental health, two decades on. By April the grant was terminated as because it was not “aligned with agency priorities.” (3)

The fact that a person’s health is determined by their life circumstances has been well-established. Clinical care accounts for only about a fifth of what determines health outcomes across a population; the rest is socioeconomic, behavioural and environmental. The gap is large enough to map: federal life-expectancy data show a 25-year spread between neighbourhoods in New Orleans, and an 18-year spread across five miles in Dallas, for example. (4) Researchers sometimes say a person’s zip code predicts their health better than their genetic code. Understanding the root causes of these disparities is the precondition for changing it, but the proposed rules would treat that line of inquiry as a “DEI” agenda and screen it out. Public health analysts warn that preventing this research will leave these phenomena unexplained and unresolved, and the populations affected sicker and more expensive to treat.

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Barriers to knowledge

Medical and health services research is often an international project, as scientists pool patients and expertise across borders to answer some of the hardest questions, including in aging. For example, one of the most revealing forms of Alzheimer’s disease is also among the rarest: inherited, early in onset, caused by a single faulty gene that runs in a few hundred families scattered across the world. No one country has enough people who carry the gene to study them, so for two decades the Dominantly Inherited Alzheimer Network (DIAN) has pooled them: more than 200 families at over 40 sites in 18 countries, tracked from before symptoms appear. The network has produced some of the field’s most important findings about how the disease begins.

The proposed rule’s limits on international collaboration would make projects like the DIAN harder to build and harder to run, isolating American science from the partnerships it depends on. The administration has already shown what that means in practice: when DIAN’s $13 million grant came up for renewal, the NIH rejected it, offered roughly $8 million in bridge funding instead, and cut off every dollar going to the network’s overseas sites. (5)

In addition to the uncertainty and instability of grant funding, new barriers to international collaboration, conference travel and publication of research findings would also threaten American science with a brain drain. Science runs on a supply of young researchers, and many are already making plans to leave American shores after last year’s cuts to funding. In a 2025 Nature poll of 1,600 scientists, 75 per cent said they were considering leaving the United States; among early-career researchers it was closer to 80 per cent. (6) The proposed new limits on conference travel and on publishing results would cut into the work a scientific career is built on. Other countries have noticed an opportunity: the European Union has put €500 million into a “Choose Europe for Science” program, (7) and academic institutions in Canada, France, Belgium, the Netherlands and Spain are all actively recruiting researchers from the United States.

Morrison points to workforce challenges in the field of geriatrics and palliative care in particular, at a time when America’s aging population is escalating demand for specialized care. “For the first time since these fields have existed, we have a very strong pipeline of early-stage scientists tackling problems that are really important to patients and families,” says Morrison. “If we derail those careers, I worry that we’re going to lose the next generation of scientists and, with them, the evidence we need to address pain and symptom management, goals of care, new models of community-based care, and delivery systems that actually work—the kinds of advances we’re already seeing in Europe.”

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Failing its own test

The administration presents the new rules as good housekeeping: more transparency, more accountability, less waste. Measured against that standard, it fails on each count. The proposal overrides peer review with a single appointee’s “independent judgment,” under which a grant can be killed for opaque political reasons. While the executive branch and Congress are empowered to establish broad research priorities -- that is what they are elected to do -- there are important questions that need to be asked and answered that may not fit the prevailing political agenda, but will help policy makers make better decisions for American lives.

On financial waste, the arithmetic is also unfavorable. The United States already spends 18 per cent of its GDP on its healthcare system — far more than any other country — in exchange for relatively poor outcomes. (8) Delaying or vetoing needed research will keep people sicker and our healthcare system yet more expensive. The Centers for Medicare and Medicaid Services project that by 2033 healthcare spending will outpace overall GDP growth, climbing to more than 20 per cent of the economy. (9) Meanwhile, healthcare research is among the most productive money the government spends: every dollar the NIH awards generates roughly $2.56 in economic activity, and that its grants supported some 390,000 jobs in 2025, according to United for Medical Research. (10) In the absence of the federal government, no one else is positioned to take up the mantle of research funding. Drug companies invest once a target looks profitable, not in the basic biology that finds the target to begin with; while philanthropy is a rounding error against a federal portfolio of more than $50 billion, and rarely pays for decades-long cohort studies, or the health-services research that tells Medicare what actually works.

American medical research has changed millions of lives for the better, says Nancy Said, a long-time caregiver for her father, who lives with multiple sclerosis. Ten years ago her father was facing the progression of his disease; but newer treatments, built on years of federally funded research, slowed it. He has stayed more independent, needed fewer medical interventions and, she points out, leaned less on Medicare than he otherwise would have. “The medical advances that slowed my father’s disease have likely saved substantial healthcare costs while improving his quality of life. Countless Americans with cancer, heart disease, Alzheimer’s disease, MS, and other conditions have benefited from federally supported research in similar ways,” she wrote in a public comment on the proposals. “Reducing the effectiveness of the research enterprise is penny wise and pound foolish.”

Public comments on the new proposal can be made HERE until July 13.

In next week’s Aging Almanac, we’ll return to our series on wellness for longevity to look at the effects of loneliness, and the evidence that social connection is a critical pillar of our well-being.

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David and his fellow octogenarian ski instructors are of course outliers when it comes to healthy aging. Most people in their eighties are not on skis, any more than they are running marathons or hiking the Inca Trail. But if your goal is to keep up with your grandchildren, travel with friends and family, or continue playing an active role in your community, there is still plenty to learn from David. Genetics play a role — a recent Weizmann Institute study found that genetics may account for over 50 per cent of lifespan differences -- but healthy behaviors still account for roughly the other half. (1) People who reach their eighties healthy and active have, almost without exception, invested in their bodies consistently over time.

Geriatricians say the prescription is unfashionably plain: eat reasonably well, move your body, sleep enough, and keep your mind engaged with learning and social connection. There is no need to take up an extreme sport, train for a marathon, or set your sights on Machu Picchu. The research shows that you don’t need to do everything to gain something: most of the benefit comes from the first changes, not the last optimization.

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Walk the walk

Ask your doctor, a physical therapist or a personal trainer where to begin with an exercise program, and the advice is the same: start small, build slowly, and above all, be consistent. Exercise still conjures something competitive and physically demanding for many older adults, but the evidence shows that “little and often” pays enormous health dividends - so much so that physicians often express the wish to prescribe it.

Louise Aronson, a geriatrician at UCSF and the Pulitzer-nominated author of Elderhood, said: “If we know exercise is the best medicine, or more effective than many medicines for high blood pressure, diabetes, depression, insomnia, heart disease, then why is it that we cannot prescribe exercise that is covered by insurance?” Speaking at a Healthy Aging conference hosted by Stanford University, she noted that the effect size of regular exercise exceeds almost any medication she could prescribe.

A healthy minimum: 20-40 minutes of walking a day and lifting something heavy twice a week.

A healthy adult should be targeting a minimum of 150 to 300 minutes of moderate aerobic activity a week (or 75 to 150 minutes of vigorous activity), plus muscle-strengthening work on two or more days, according to World Health Organization guidelines. (2) That’s equivalent to just 20-40 minutes of walking a day and lifting something heavy twice a week. You can do more than that of course, but the increased benefit after 300 minutes a week is marginal.

For those who prefer to count their steps, researchers found that the meaningful threshold for adults over 60 sits between 6,000 and 8,000 daily steps, with the steepest health gains at the bottom of the range. (3) The commonly quoted 10,000-step target turns out to be marketing, traceable to a 1960s Japanese pedometer campaign rather than a clinical threshold.

Bodyweight work, resistance bands and weighted household objects are all good ways to train for strength.

The evidence for strength training is equally encouraging for those just getting off the couch and feeling intimidated by the gym. A 2022 study found that doing any resistance training at all was associated with a 15 per cent reduction in all-cause mortality and a 19 per cent reduction in cardiovascular mortality. The peak benefit came at around 60 minutes a week. Bodyweight work, resistance bands and weighted household objects all count. (4)

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One of the most important outcomes of strength training for anyone past 60 is maintaining function: rising from a low chair without using your hands, and catching yourself when you stumble are critical skills. Older adults are particularly vulnerable to falls for reasons that accumulate with age: muscle mass declines, balance and reaction time deteriorate, proprioception becomes less reliable and blood pressure drops become more common. The result is that falls are the leading cause of fatal and non-fatal injuries among Americans aged 65 and older. (5)

Balance and functional training can cut fall rates by about a quarter, according to a 2019 review of 108 randomised trials. (6) Tai chi has the most consistent record: a 2018 study found six months of Tai Chi reduced falls by 58 per cent, compared with stretching in adults already at high risk. (7) Walking alone doesn’t reduce fall risk.

Rehab is exercise too: older adults performing the demands of independent living are doing athletic work and deserve to be trained accordingly.

Rehabilitation is an integral part of this picture, although it is often treated as recovery from illness rather than exercise in its own right. Amy Pastva, a rehabilitation scientist at Duke University, works with older adults after heart failure, stroke and brain injury. Pastva’s research has documented consistent functional gains in patients assumed to be past significant benefit, when they receive a comprehensive three-phased program of inpatient therapy, followed by 12-weeks of outpatient physical therapy and 3 months of home-based maintenance exercises - a timeline consistent with producing real behaviour change. The program addresses four domains: strength, balance, mobility and endurance, calibrated to wherever the patient starts, and becoming progressively more challenging. Her argument is that older adults performing the demands of independent living are doing athletic work and deserve to be trained accordingly. Pastva is currently the lead investigator on a phase 3 trial of the program. (8)

The behaviour-change research supports starting from wherever you are. Stacy Sims, an exercise physiologist, says: “It is never too late to start. The body is very adaptable. If you give it a challenge, the body is like, ‘Whoa, okay, let’s see how I can overcome that.’”

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Eat like a Spaniard

Good dietary advice is often crowded out with hype about the latest approach to eating for longevity, but with every book deal or celebrity diet, the best evidence continues to point back to the Mediterranean diet. The most-tested diet in the world, the Mediterranean diet consists of vegetables, fruit, beans, whole grains, fish, olive oil, and less red and processed meat. The landmark study is PREDIMED: 7,447 Spanish adults at high cardiovascular risk, tracked over about five years. Those assigned to a Mediterranean diet — extra olive oil or extra nuts — had around 30 per cent fewer heart attacks, strokes and cardiovascular deaths than a control group told simply to eat less fat. (9)

For cognitive health specifically, researchers at Rush University developed the MIND diet, which weights the Mediterranean diet toward the foods most consistently linked to brain health: green leafy vegetables, berries, nuts, fish, olive oil, and a sharp limit on butter, cheese, pastries and fried food. Researchers tracking 923 older adults in an observational study found that those who followed the diet most closely had a 53 per cent lower rate of Alzheimer’s over four and a half years. Even moderate adherence cut the risk by 35 per cent. (10)

A 2024 study found convincing links between higher ultra-processed food consumption and all-cause and cardiovascular mortality, type 2 diabetes, depression and several other outcomes.

There’s also mounting evidence that ultra-processed foods are bad for your health and longevity. These are the packaged baked goods, breakfast cereals, sugary drinks, reconstituted meats and artificially-flavored snacks that your grandmother wouldn’t recognise. A 2024 study found convincing links between higher ultra-processed food consumption and all-cause and cardiovascular mortality, type 2 diabetes, depression and several other outcomes. Published in the British Medical Journal, the study pulled together 45 meta-analyses involving nearly ten million people. It found that each 10 per cent increase in ultra-processed food intake was associated with a 10 per cent higher risk of dying from any cause. (11)

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None of this is new and interesting enough to sell, which is why the diet industry keeps looking for something better. Take for example, time-restricted eating — eating within a set daily window, typically eight hours. The diet has been heavily marketed in recent years, particularly to middle-aged women, as a tool for weight loss and metabolic reset. However, the case for time-restricted eating as a longevity strategy is thin: a randomised trial in the New England Journal of Medicine found that the practice produced no additional benefit over standard calorie reduction when calories were controlled, suggesting the window itself isn’t the active ingredient. (12) As one dietician put it to the Aging Almanac: “The reason that it helps you lose weight is not that you’re restricting your feeding to a certain window, it’s because you’re skipping breakfast.” The diet also works against getting the most out of exercise: skipping breakfast consistently leaves people under-fuelled for morning training, which is where much of the longevity benefit comes from.

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Sleep before you’re dead

Sleep is when most of the body’s repair work happens. While you’re unconscious, the brain runs what scientists call the glymphatic system, an overnight rinse cycle that clears out the waste proteins that build up during the day, including the amyloid fragments implicated in Alzheimer’s. The same hours are when the brain consolidates the day’s experiences into long-term memory, deciding what to keep and what to discard.

Deep sleep is also when the pituitary gland releases most of the day’s growth hormone, which repairs muscle, bone and soft tissue. And blood pressure drops by ten to twenty per cent overnight, giving the cardiovascular system a recovery window it doesn’t otherwise get. When sleep is short or broken night after night for years, those processes fall behind and the consequences arrive in the form of higher rates of heart disease, dementia, depression and type 2 diabetes.

Dr Tommy Wood, neuroscientist and author of newly-released The Stimulated Mind, argues that if sleep wasn’t essential, evolution would have eliminated it at some point. “Not only is spending a third of your day completely unconscious (and defenseless) risky from a survival standpoint, but that’s also a lot of time that could be spent doing other things related to survival, like finding food and procreating.” Wood explains that quantity, quality and regularity of sleep all play an important role.

The sweet spot seems to be between 7-9 hours. Pooling 16 studies involving more than a million people, an analysis by Francesco Cappuccio found that short sleep (under seven hours) is linked to roughly a 12 to 15 per cent higher risk of dying from any cause; long sleep (over nine) carries a larger increase, though that figure is partly confounded by undiagnosed illness driving people back to bed. (13) The same pattern is visible in hospital claims: irregular sleepers are more likely to end up in the hospital, says Adrian Gore, the developer of Vitality, a behavioral insurance model that incentivizes policyholders to adopt healthier behaviors.

The cognitive evidence is also striking. In a study of almost 8,000 British civil servants followed for 25 years — known as the Whitehall II study — people who slept six hours or less at age 50 had a 30 per cent higher rate of dementia than those who slept seven, after adjustment for the usual confounders. The effect held at age 60 and 70. The strongest predictor was persistent short sleep across midlife, not any one bad year. (14)

To improve your sleep environment, Wood’s suggestions include: (a) lower the lights as you approach bedtime, and keep your bedroom dark; (b) a warm bath before bed and/or a cool bedroom can produce the temperature drop the body needs to trigger sleep; (c) the timing of food and drink before bed depends on your specific needs, but avoid a large meal too close to bedtime; (d) have your last dose of caffeine about 9 hours before bed; (e) practice relaxation techniques; (f) build a routine around your bedtime.

Sleeping pills aren’t a long-term answer; the goal should be to improve natural sleep function.

If insomnia is in the way, get help. Unfortunately, the prescription drugs that dominate the insomnia market (zolpidem and its relatives) come with real downsides: falls, daytime cognitive impairment, and a tendency to lose effect over time. The evidence points to cognitive behavioral therapy for chronic insomnia, now available through apps, online courses and a growing number of clinics. Sleeping pills aren’t a long-term answer; the goal should be to improve natural sleep function.

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Play the Brain Game

The same habits that protect your heart protect your brain. Researchers in Finland gave 1,260 older adults at risk of dementia either the usual health advice or a two-year program of nutritional counseling, more exercise, brain training and vascular monitoring. Two years on, the intervention group scored 25 per cent better on cognitive tests, with the biggest gains in planning and quick thinking. (15) This study was the first trial to show that a coordinated lifestyle program could measurably protect cognition in people at risk.

On the question of whether brain training works, the some of the best evidence comes from the ACTIVE trial, funded by the US National Institutes of Health. ACTIVE randomised 2,832 older adults to one of three cognitive programmes (memory, reasoning, or speed-of-processing training) or a control group. Ten-year follow-up data in 2014 showed that reasoning and speed training preserved cognitive gains a decade later. More recent follow-ups, now past the 20-year mark, suggest reduced dementia incidence in the trained groups. The effects are stubbornly domain-specific: speed training improves speed; reasoning training improves reasoning with little spillover effects. (16)

Crosswords — a common recommendation for older adults — aren’t enough to keep your brain sharp. A team at the University of Texas had one group of older adults take up something genuinely new and demanding (digital photography, quilting), another was given a low-challenge social activity, another was given an activity to do alone. Participants pursued their activity for 15 hours a week, over three months. Only the new learners’ memories improved, and only their brain scans showed it. What matters is the difficulty, not the time spent: the active ingredient looks like effortful, unfamiliar cognitive work, not the comfortable repetition of a familiar puzzle. (17)

None of this is what the longevity industry sells. There is no proprietary blend in it, no subscription, and no $5,000 diagnostic. The basics are free, they work, the dose-response is forgiving, and the first step is worth more than the last. Next week in the Aging Almanac, we’ll look at the effects of loneliness and the evidence that social connection is another critical pillar of our well-being.

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Other articles in this series on Wellness for Longevity:

For scientists, longevity invokes the study of how we age, its biological processes and whether they can be slowed or altered. Formerly considered an oddball corner of the research community, longevity science has raised billions of dollars of funding, attracted some of the brightest minds, and published more than 300,000 academic papers in the past decade. For Silicon Valley billionaires, longevity is a kind of quest to engineer their way out of mortality, spawning a host of new ventures with quasi-scientific promises of “precision wellness” and “personal optimization.”

For social media influencers, longevity is big business, driving sales of cold plunges, red light therapies and dietary supplement “stacks” to the wealthy and worried well. For primary care physicians, the topic of longevity has created new opportunities to talk to patients about good health habits and preventative care, but it hasn’t created the clinic time to have the conversation.

But while many will describe a path to “wellness for longevity” with considerable conviction, what the underlying science supports is considerably less clear. As Dana Smith, a reporter for the NY Times, aptly described it in a recent article: “Longevity medicine is a confusing brew of noble intentions, cutting-edge care and expensive snake oil.”

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From Lifespan to Healthspan

Modern medicine has already added decades to our average life expectancy. An American baby born in 1900 could expect to reach roughly 47 years of age; one born today can expect to live to 78. Most of the 20^th century gains came from sanitation, vaccines, antibiotics and improved nutrition, which together collapsed the rates of infant and childhood mortality. The gains since 1950 have come from cholesterol-lowering drugs, blood-pressure control, and a generation of cancer therapies that have turned several of the most lethal diagnoses into manageable conditions. Today, an American turning 65 can expect to live another twenty years on average. (1)

The added years are not, however, guaranteed to be good ones. In the United States, the gap between lifespan and “health span” is about 12.4 years, meaning that the average person spends roughly 12 years living with disease or disability before death. The US lifespan-healthspan gap was the widest of all 183 World Health Organization member states in a 2024 study. (2) In short, medicine has been more successful at extending life than at preserving the quality of it, and the gap is wider here than anywhere else.

That reality has fueled the research agenda. Aging research today is preoccupied less with mortality than with morbidity: the work of extending the years of health and minimizing the years of dependence. The questions are not simply whether human beings can live longer, or by how much, though there is debate over whether a hard biological ceiling sits somewhere around 120 years. The questions now include why the added years are so often years of decline, which biological processes drive that decline, and whether any of those processes can be slowed, paused or reversed in human beings.

The fascination with longevity is not entirely new - academics have been documenting the unusually long-lived for more than a century. Alexander Graham Bell, in a 1918 monograph on the Hyde family genealogy, set out to demonstrate that longevity was heritable (3); Raymond Pearl, the Johns Hopkins biologist, spent the 1920s trying to derive a biological law of mortality from human population data. (4) Large observational studies of long-lived communities came later: the Adventist Health Studies in Loma Linda began in 1958, and the Okinawa Centenarian Study, started by the geriatrician Makoto Suzuki in 1975, remains the longest continuously running cohort study of centenarians in the world.

If certain populations achieved healthy old age at unusual rates, those outcomes were not purely the genetic lottery, and the conditions producing them were worth understanding.

In the early 2000s, the Belgian demographer Michel Poulain and his colleagues coined the term “blue zone” to describe an inland Sardinian region with unusual centenarian concentrations.(5) Popular interest in longevity took off soon after, fueled by journalist Dan Buettner’s synthesis of the Blue Zones work for a general readership. In a 2005 National Geographic cover story, later expanded into a blockbuster run of books and a 2023 Netflix documentary, Buettner identified five such regions (Okinawa, Sardinia, Ikaria, the Nicoya Peninsula and Loma Linda) where unusually large numbers of people reached extreme old age in good health. Working with Poulain, Suzuki and others, Buettner reframed the public conversation. If certain populations achieved healthy old age at unusual rates, those outcomes were not purely the genetic lottery, and the conditions producing them were worth understanding.

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The Science and its Limits

Aging is biologically plastic, meaning that its processes can be slowed, paused or altered. The laboratory evidence for that assertion stretches back nearly a century. In 1935, the Cornell nutritionist Clive McCay showed that rats on a calorie-restricted diet lived a third longer than freely fed rats, first introducing the idea that lifespan was not biologically fixed. (6) In 1961, Leonard Hayflick at the Wistar Institute showed that cultured human cells stop dividing after a finite number of generations, opening the field of cellular senescence. (7) In 1993, Cynthia Kenyon at UCSF showed that a single-gene mutation could more than double the lifespan of the laboratory worm C. elegans, establishing that the rate of aging itself was biologically modifiable. (8) And in 2013, Steve Horvath at UCLA published his first paper on epigenetic clocks, which estimate “biological age” from DNA methylation patterns and consistently find a measurable gap between chronological and biological years. (9)

The work expanded from individual labs to aging-focused institutions. The Buck Institute for Research on Aging, founded in Novato, California in 1999, was the first US research centre dedicated solely to the biology of aging. Private capital has followed, funding around 700 aging-related start-ups, including ventures such as Alphabet’s Calico (2013), Bezos- and Milner-backed Altos Labs (2022, $3 billion), Sam Altman’s Retro Biosciences ($180 million) and Unity Biotechnology.

The current scientific consensus, set out in the so-called “Hallmarks of Aging” framework by Carlos López-Otín and colleagues, identifies twelve cellular mechanisms by which the body deteriorates over time, from telomere attrition and mitochondrial dysfunction to chronic inflammation and stem-cell exhaustion. (10) Certain interventions designed to alter or slow these mechanisms have produced interesting results in the laboratory, for example rapamycin, NAD precursors and senolytic compounds (for further detail on these interventions - see box).

Aging is a multi-faceted systemic process, so an intervention that affects a single biological marker of aging is not the same as finding a standalone “master switch” that will stop the biological clock.

No intervention has yet been proven at scale to extend human lifespan or delay the onset of disease, and animal models routinely disappoint in human studies. López-Otín and colleagues caution that aging is a multi-faceted systemic process, so an intervention that affects a single biological marker of aging is not the same as finding a standalone “master switch” that will stop the biological clock. (11) However, the detail matters less than the principle that follows from it: aging is increasingly understood as a set of processes that can, in theory, be modified. That principle is what is powering the wellness-for-longevity industry. If aging is modifiable, then almost anything that touches one of the twelve hallmarks, whether a supplement, a sleep protocol, a diet or a piece of wearable hardware, can be packaged as longevity science, even if the evidence base is still being developed.

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The Wellness Industrial Complex

While science is slowly and deliberately developing its understanding of aging, the market for postponing death and decline is large, profitable and growing quickly. McKinsey puts the US wellness market at $480 billion in 2024, expanding 5 to 10 per cent a year. (16) Dietary supplement sales alone reached $69.3 billion, with “healthy aging” among the fastest-growing categories, according to the Nutrition Business Journal. (17) Narrower estimates of the US anti-aging segment specifically — skincare, injectables and clinic treatments — run to around $20 billion, though projections vary widely across consultancies. Where there is fear of death and disposable income, there is, sooner or later, an industry to serve it.

The foundation of the market is Americans taking dietary supplements. Three-quarters of US adults report taking at least one dietary supplement, according to the latest annual survey from the Council for Responsible Nutrition, and ninety-two per cent of those users describe the habit as essential to their health. The median monthly spend, across all users, is roughly $50. (18) Vitamin D has topped the popularity rankings for a decade; magnesium and fish oil round out the top three, with multivitamins, protein powder, creatine, greens, fibre, collagen, B12, vitamin C and probiotics filling the household medicine cabinet.

There is now also a longevity-specific tier of products, including resveratrol, spermidine, berberine, fisetin, the NAD precursors NR and NMN, and newer entrants such as Fatty15 and Mitopure. These products promise biological intervention rather than nutritional adequacy, and they are priced to match.

The celebrity stacker has become its own genre. Kourtney Kardashian, who launched her Lemme line of supplement gummies in 2023, documents her personal regimen on Instagram. Joe Rogan has spent years walking his podcast audience of tens of millions through the contents of his daily stack — Athletic Greens, vitamin D, fish oil, Alpha Brain from Onnit, the supplement company he co-founded and sold to Unilever in 2021. Rogan remains one of the country’s most influential lay endorsers of supplementation.

Perhaps the most extreme is Bryan Johnson, the technology founder whose Blueprint longevity protocol once involved more than a hundred pills a day, dosed against the minute. He has since consolidated some of the stack into proprietary multivitamins sold under his own brand, but the spectacle of his daily regimen, posted in granular detail on his social channels, has become a cultural reference point for what total commitment to supplementation looks like. His goal? Immortality by 2039, and a booming longevity business to boot.

The clinical view does not align with the consumer enthusiasm for supplementation. The US Preventive Services Task Force concluded in 2022 that the evidence is insufficient to recommend vitamin or mineral supplements for the prevention of cardiovascular disease or cancer in healthy adults. An accompanying editorial by Northwestern physicians described routine multivitamin use as “a waste of money” for most Americans. (19) The mainstream medical position, expressed regularly by the American Medical Association, is that a generally healthy adult eating a varied diet meets nearly all nutritional needs from food, and that supplementation is appropriate primarily for documented deficiencies, pregnancy, or specific life-stage conditions.

Bioavailability is a further problem: resveratrol, berberine and several other heavily marketed compounds are broken down by the gut and liver before they reach the cells they are supposed to act on. Meanwhile, the popularity of stacking supplements may be at best a waste of time and money, but it could also be harmful in the wrong combinations, or when combined with prescription medications.

“You can supposedly lengthen your telomeres with products available on amazon.com, but the question of whether it’s a good idea to lengthen your telomeres is quite another matter.”

The meagre evidence for supplementation does little to slow the market, in part because under the 1994 Dietary Supplement Health and Education Act, supplements in the United States are regulated more like food than like medicine. “You can supposedly lengthen your telomeres with products available on amazon.com, but the question of whether it’s a good idea to lengthen your telomeres is quite another matter,” said Nobel prize-winning biologist Venki Ramakrishnan at a Columbia University lecture late last year. “The fact is, you can buy all kinds of supplements that claim they will do it and of course, no FDA approval or clinical trials are required because these are essentially considered food supplements.”

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The FDA does not review dietary supplements for safety or efficacy before they reach the shelf, and intervenes only once harms have been reported in the consumers who have already bought them. Independent testing has repeatedly found that what is in the bottle bears limited resemblance to what is on the label, with contamination, under-dosing and the outright absence of the advertised ingredient all well documented.

Beyond the supplement aisle, the same logic of postponing decline plays out at considerably higher prices. Wellness centers sell NAD+ infusions, intramuscular shots of personalized “nutrients” and cryotherapy. Executive physicals, offered by the Mayo Clinic, the Cleveland Clinic and a growing set of concierge providers such as Fountain Life and Sollis Health, offer a day of bespoke consultations with a battery of diagnostic testing at $5,000 to $25,000 a visit.

Full-body MRI scans, sold direct-to-consumer by companies such as Prenuvo, Ezra and Neko Health, are pitched to healthy adults as a way to catch disease at its earliest, most treatable stage. A scan typically runs between $1,000 and $2,500, often promoted by celebrity endorsements and the implication that any sufficiently affluent person who skips one is taking an unnecessary risk. Below, Cindy Crawford and Rande Gerber post about their body scans with Prenuvo, in which they are both invested: “The couple that scans together, stays together.”

The medical critique, made repeatedly by professional bodies including the American College of Radiology, is that whole-body imaging in people without symptoms produces a high rate of incidental findings — abnormalities of unclear significance that trigger biopsies, follow-up scans and, sometimes, surgery, often for problems that would never have caused harm if left alone. (20)

The biohacking economy sells the same proposition in hardware. Continuous glucose monitors, now marketed to people without diabetes by companies like Levels, Nutrisense and Abbott’s Lingo, promise actionable data about the foods that “spike” individual blood sugar. Cold plunge tubs, red-light panels, and home hyperbaric oxygen chambers retail for thousands of dollars apiece on the strength of a small number of human studies and a much larger number of social media testimonials.

The longevity industrial complex sells hope, at a premium, to people who can pay. Sometimes the underlying science is real, but the proof of concept in humans is decades away.

The longevity industrial complex sells hope, at a premium, to people who can pay. Sometimes the underlying science is real, but the proof of concept in humans is years away - though the advent of AI may accelerate new discoveries. The most evidence-supported longevity interventions are not for sale on a subscription basis, which perhaps explains why they receive a fraction of the cultural attention given to those that are. Sleep, diet, exercise and preventive care form the unglamorous foundation, alongside social connection and finding purpose.

Rachele Pojednic, chief science officer at Restore Hyper Wellness - a provider of cryotherapy, red light therapy and shots of NAD precursors - put it bluntly at a recent conference on Healthy Aging in Stanford: “If you are not sleeping well, you’re not exercising, you’re not eating a healthy diet, it does not matter how many supplements you take, it cannot overcome those foundations.”

Last month, Bryan Johnson shared 42 lessons he has learned from spending millions on his quest for longevity. Remarkably, for a purveyor of longevity supplements, his list was entirely made up of common sense tips like, “go to the dentist” and “texting while driving is dangerous,” and best of all, “do less… most things don’t work.”

Chief Executive and President of the Buck Institute on Aging Eric Verdin, who has studied the science of aging for more than 30 years, delivered a riposte for the ages: “The greatest longevity hack of all turns out to be the one nobody can monetize: go to bed, eat a vegetable, call a friend, and stop buying things from people who tell you most things don’t work. Live better longer. It’s mostly free.”

In next week’s Aging Almanac, we’ll look more closely at the importance of sleep, exercise, diet and brain health for a long life well-lived.

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Other articles in this series on Wellness for Longevity:

In the absence of an acute health event, many families struggle with knowing if and when it is time to look for a senior living arrangement, especially when their loved one may be resistant to the idea. Some of the warning signs worth attending to are repeated falls, new or worsening confusion about time, place, or familiar people; missed medications or stockpiling; difficulty preparing food or maintaining nutrition; repeated incidents with the stove; getting lost on familiar routes; declining hygiene that suggests bathing has become difficult or is being avoided. Caregiver burnout is also a valid reason to make a change: if the caregiver is having difficulty functioning — not sleeping, not working, withdrawing from their own health — the situation has already passed the threshold for re-evaluation. Doctors, social workers, and geriatric care managers can help assess readiness and the level of care that your loved one may need to be safe.

The Aging Almanac has developed this guide to the maze of senior living options to support both families with the time to plan, and families who do not have that luxury.

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Senior Living Terminology

Senior living terminology is inconsistent and frequently used in ways that can obscure real differences in care. Below are the primary long-term care settings, organized roughly from least to most intensive.

Independent Living

Independent living is for older adults who can manage their own daily care: dressing, bathing, medications, meals and so on, but who want a community environment with options for shared dining, social programming and transportation. Independent living facilities are not licensed for any medical or personal care, so if a resident develops the need for care, they must hire private help, move out, or transition to a higher level of care if the campus offers one. Costs are entirely out-of-pocket; Medicare and Medicaid do not cover them.

Continuing Care Retirement Community (CCRC)

CCRCs (also called Life Plan Communities) offer multiple levels of care in one location. They typically offer independent living, assisted living, memory care, and skilled nursing on the same campus. The premise is that older adults can enter at the independent living level, but also plan for higher levels of care without relocating to a new facilities. Most CCRCs require entrants to be functionally independent at admission.

CCRCs require a significant entrance fee, ranging from tens of thousands to well over $500,000 depending on contract type and market, plus monthly fees. Three contract structures are common:

• Type A (Life Care): highest entrance fee; future care included at little or no additional cost. Effectively long-term care insurance bundled into the contract.

• Type B (Modified): lower entrance fee; future care at a discounted rate.

• Type C (Fee-for-Service): lowest entrance fee; future care at market rates as needed.

Before signing, retain an elder law attorney to review the contract and examine the facility’s financial statements. CCRC insolvencies are rare but they happen, and entrance fees are at risk.

Assisted Living

Assisted Living Facilities are for older adults who need help with one or more activities of daily living such as bathing, dressing, toileting, transferring, eating or managing medications, but who do not require continuous skilled nursing care. Most facilities cannot accommodate two-person transfers, complex medical care, or significant behavioral symptoms of dementia. Substantial decline in mobility, continence, or cognition typically forces a move to a higher level of care. Most residents pay privately, and/or via a long-term care insurance policy. Medicaid coverage for assisted living exists in most states but is limited, and facilities vary widely in whether they accept it.

Memory Care

Memory care is a specialized form of assisted living for adults living with dementia and who are at risk of wandering, have behavioral symptoms, or who cannot safely live in standard assisted living. Memory care has secured units, higher staffing, and dementia-specific programming. It is generally more expensive than standard assisted living — typically by $1,500 to $2,000 per month or more. Most memory care units accept residents who can still walk and feed themselves, while those with substantial physical care needs may require nursing home care.

Nursing Home (Skilled Nursing Facility)

Nursing homes are for adults requiring 24-hour skilled nursing care: significant medical needs (wound care, IV medications, complex chronic conditions), severe physical limitations (bed-bound, two-person transfers), or advanced dementia combined with physical decline. Nursing homes are federally regulated and inspected. “Skilled Nursing Facility” (SNF, an acronym often used by health workers and pronounced “sniff”) is the formal Medicare and Medicaid term and is used interchangeably with “nursing home” in practice.

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Short-term acute care prior to long-term placement

Some care settings resemble long-term facilities but serve a distinct purpose: short-term, Medicare-covered rehabilitation following an acute health event. They are frequently the route by which families end up choosing a long-term placement under time pressure.

Acute Inpatient Rehabilitation

These units are for patients who require intensive interdisciplinary rehabilitation and can tolerate three or more hours of therapy a day. “Tolerate” in this context is somewhat subjective and will be in the judgement of the facility, but it means the patient must be medically stable enough to engage in therapy and have the potential to make improvements. Patients are typically transferred directly from an acute hospital. Care is short-term only and is covered under Medicare Part A hospital benefit period rules. Admission requires physician certification.

Subacute Rehabilitation

Subacute rehabilitation is for patients who need rehabilitation but cannot “tolerate” the intensity of acute rehab. This takes place in a Skilled Nursing Facility (SNF) and it is the most common post-hospitalization setting for older adults. Medicare covers up to 100 days per benefit period: it pays in full for the first 20 days, then with daily coinsurance ($217/day in 2026) for days 21–100. Coverage can end before 100 days if the patient stops making measurable progress. This is a common occurrence that families rarely anticipate. Written notice is required before coverage ends.

BEWARE: If your loved one has been hospitalized, confirm whether they have been admitted as an ‘inpatient’ or ‘under observation’: Medicare’s SNF benefit requires a qualifying 3-day inpatient hospital stay. Patients held ‘under observation’ are classified as outpatients, even if they sleep in a hospital bed for several nights, and this can eliminate SNF coverage entirely. Ask explicitly on admission: ‘Is this person admitted as an inpatient or under observation?’ The hospital must notify patients in writing about this (the Medicare Outpatient Observation Notice), but families routinely miss it. If the classification is wrong, the patient’s physician can request reclassification..

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How long it takes, and what to do in an emergency

A planned move into senior living typically takes between four and twelve weeks: research and shortlisting, tours, application and financial review, contract review, and move-in scheduling. Communities with waitlists, particularly memory care units in dense urban markets, can extend this further, sometimes by months.

In a crisis, the timeline collapses and there are typically two paths:

• If skilled nursing care is appropriate: the hospital can usually arrange a direct transfer to a SNF, sometimes the same day. Medicare’s SNF benefit then provides 20 to 100 days during which a longer-term plan can be developed. This is the most common bridge to permanent placement.

• If assisted living is the appropriate level of care: the path is harder. Few assisted living communities accept move-ins within 72 hours. Workable options may include a short-term respite stay (most facilities offer these for 30 to 90 days at a higher daily rate but without a long-term commitment), or in-home care during the search for a placement.

Hospital discharge planners and social workers are the first call in any urgent placement. They have current information on local availability and can sometimes facilitate same-day admissions. Geriatric care managers can also help with emergency placements on a fee basis. One good rule of thumb: do not sign a long-term contract in the context of an emergency placement. A short-term arrangement that can be undone is almost always preferable to a permanent placement that is difficult and expensive to unwind.

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What it costs

Senior living pricing is unreasonably complicated and it’s important to understand all the components: the sticker price is rarely the full price.

The fee structure

• Community fee: This is a one-time, upfront charge of $2,000 to $10,000, sometimes more for high-end facilities, and it is often framed as non-refundable. You can negotiate this fee; some facilities reduce or waive it during slow periods.

• Base monthly rate: This covers room, board, and a defined set of services. What’s included varies enormously between facilities, so ask for the itemized list.

• Care levels: Facilities assess residents at intake and assign a level of care (often 1–5). In assisted living, each level adds $300 to $800 per month to the base rate. Expect higher pricing in nursing homes due to higher staffing costs for nurses and physicians. Levels are reassessed periodically and tend to rise over time.

• Medication management: This is almost always billed separately, typically $200–600/month.

• Ancillary services: Laundry, transportation, personal supplies, beauty services, and guest meals are often billed individually. Read the contract.

Plan for future costs

Annual rate increases in assisted living have averaged 4–8 per cent in recent years and some facilities raised rates more aggressively post-pandemic. It’s wise to run the numbers at 5 per cent annual increases over three to five years and see whether a facility is within the budget. Care needs are also likely to increase: a resident entering at care Level 2 may be at Level 4 within two years.

Some facilities will require families to hire a full-time private aide if a resident’s needs exceed standard staffing — an additional $4,000 to $10,000 or more per month. Ask about this policy before signing. To understand baseline pricing for your local market, Genworth’s Cost of Care Survey breaks down median costs by state and care type.

If the placement doesn’t work out

What happens if the resident is unhappy, declines faster than expected, or the facility decides it can no longer meet their needs? These terms vary widely by facilities and it’s important to understand them before signing: ask whether the community fee is refundable and under what conditions; what notice is required from the resident and from the facility; what recourse exists if the facility initiates an involuntary discharge; and for CCRCs with large entrance fees, what the refund structure is under each contract type. Residents in licensed facilities have legal rights around involuntary discharge. If a discharge appears improper, your state’s long-term care ombudsman (ltcombudsman.org) can advise.

Medicaid: what facilities owe, and what they don’t

• Nursing homes that are Medicaid-certified: (roughly 80–90 per cent of nursing homes) are required to admit and retain eligible residents, but facilities control the number of designated “Medicaid beds.” Private-pay residents are financially preferred as Medicaid reimburses at roughly 30 per cent less than private rates, and Medicaid reimbursement often does not cover the full cost of a resident’s care. So be warned that a facility can technically accept Medicaid and still have no available Medicaid beds.

• Assisted living has no Medicaid obligation: Facilities may accept, limit, or refuse Medicaid at their discretion. Most higher-end facilities do not accept it at all.

• Private-pay minimums: Many facilities require a 2–3 year private-pay period before accepting Medicaid. They are legally allowed to do so, but it’s important to keep this in mind when reading the contract if you expect your loved one to need Medicaid in the near future.

• Medicaid Pending: Some facilities admit residents with Medicaid applications under review; others will not. If a spend-down is underway, ask explicitly.

Medicaid eligibility involves strict income and asset limits that vary by state and update annually. An elder law attorney can advise on planning. Free counseling is available through the State Health Insurance Assistance Program (shiphelp.org); do not rely on facility admissions staff for this guidance.

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Conducting the Search

Cautionary Tales

Referral Companies: There are a handful of large senior care referral companies that consistently appear in the first search results families encounter online, including A Place for Mom, Caring.com and SeniorAdvisor. These companies present themselves as providing free advisory services, but families should note that they are not neutral. They receive commissions from the facilities when families move in - typically the equivalent of one month’s rent per referral. This creates some perverse incentives: a 2024 Washington Post investigation into A Place for Mom found that more than a third of facilities on the company’s “Best of Senior Living” lists had been cited for serious regulatory violations, prompting the Senate Special Committee on Aging to open a formal inquiry that year. The inquiry found that facilities that do not pay referral fees are not listed; Medicaid-accepting facilities are largely excluded; and Senate investigators found that a majority of families who used the service ended up spending more than they had planned.

Ownership: Roughly 5 per cent of nursing homes are owned by private equity firms; a larger share are owned or partly owned by related financial structures. (1) Research has linked private equity ownership to higher resident mortality, lower staffing, increased use of antipsychotics, and higher Medicare costs. (2) Changes of ownership more broadly — not just private equity — are associated with declines in quality ratings, driven by lower staffing and inspection scores. Ask directly: who owns the facility, and has it changed hands in the past three years?

Better approaches

• Call directly: identify facilities in your target area and call them yourself. Ask about availability, current rates, and Medicaid policy. Then tour in person at a mealtime - ideally you can tour without an appointment, though facilities often won’t accommodate this.

• Tour now, not later: the most useful thing a family can do is visit facilities before anyone needs a placement. Most welcome prospective tours; it costs nothing and gives a personal sense of the place that no website conveys. For memory care in particular, tour early: waitlists at preferred facilities can be as long as 6–18 months in some markets. After the tour, ask to speak with one or two current residents or family members without staff present. Ask what they wish they had known before moving in. Below is a guide to the questions to ask.

• Medicare’s Care Compare: medicare.gov/care-compare provides inspection reports, staffing data, and star ratings for nursing homes.

• Long-term care ombudsman: every state has one. The ombudsman’s office handles complaints about nursing homes and assisted living facilities and can identify facilities with open complaints or poor inspection histories (ltcombudsman.org).

• Geriatric care managers: Aging Life Care Professionals, also known as geriatric care managers, provide independent, fee-based placement guidance with no referral fees from facilities. In a complex situation, this is often money well spent.

To download a printable version of this guide, click the button below.

Printable Senior Living Questions

In next week’s Aging Almanac, we’ll talk about one of the biggest buzzwords in the aging field: “longevity.” What does it really mean, how do we attain it, and how do we tell fact from fiction in an industry riddled with influencers and disinformation?

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It has been shifting, nationally, for decades. According to Pew Research Center analysis of census data, 59.7 million Americans lived in multi-generational family households in 2021, a figure that has quadrupled since 1971. The share of the population living in multi-generational homes has more than doubled over the same period, from 7 per cent to 18 per cent. (1) The trend has been building steadily for fifty years, and there is no sign it has peaked.

The drivers of a reversion to multigenerational living are three fold: financial pressure, caregiving needs, and cultural norms in immigrant communities. Housing costs have made it increasingly challenging for young adults to get on the housing ladder. Childcare costs have grown exponentially, while the care system for aging parents has few, if any, affordable options. And for many families, particularly those with roots in Asian, Latino, South Asian, and Pacific Islander communities, multigenerational living is a cultural norm. The better question for these families is not why more families are living together, but why it took everyone else so long to catch up.

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Back to the Future

The idea that parents and adult children should maintain entirely separate households is, in historical terms, a fairly recent concept. For generations of American families, the multigenerational household was the default, until it was undermined by a series of twentieth century policy decisions. First, Social Security and Medicare gave older adults the financial independence to live alone; second, federal mortgage programs and the postwar highway system underwrote the single-family suburban house; and finally, the nursing home industry institutionalized the notion that care in later life was best handled by professionals in dedicated facilities, rather than by families at home.

Financial concerns were cited as a reason for multigenerational living by majorities of all income groups, while caregiving needs came a close second.

Those conditions are now weakening. Housing costs have risen faster than wages, locking many young families out of the market, particularly in the coastal markets of California, New York and Florida. According to the National Association of Realtors (NAR), the share of real estate sales to first-time home buyers was at an all-time low of 21 per cent in 2025, while the median age of a first-time homebuyer was 40, an all-time high since the NAR started collecting the data in 1981. (2) In many markets, the homes young families need are being held by empty nest baby boomers - who own nearly twice as many large homes (three or more bedrooms) as millennial families, (3) in part because older households have nowhere smaller and affordable to move into in their communities.

Meanwhile, the eldercare system has not kept pace with the aging population’s needs, increasingly shifting the burden of care on to families. And at the same time, professional childcare has become unaffordable for many middle-income families: the national average for a year of infant care exceeds $15,000, while childcare for two children can exceed $25,000. In high-cost cities it is considerably higher. [4] According to a Pew Research Center survey, financial concerns were cited as a reason for multigenerational living by majorities of all income groups, while caregiving needs came a close second. (5) In addition, the demographic composition of the United States is shifting toward groups for whom multigenerational living never stopped being the cultural baseline.

A 2023 report from the Harvard Joint Center for Housing Studies confirms the scale of the shift for the elder population in particular: roughly 20 per cent of adults 65 and over, representing 10.9 million people, lived in multigenerational households in 2021, an increase of more than 80 per cent since 2006. Older adults from racial and ethnic minorities, particularly Hispanic and Asian adults, are significantly more likely to live with younger generations of their family than older white adults. (6)

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The Case for Multigenerational Living

The financial case for multigenerational living is straightforward. A multigenerational arrangement lets families pool resources: shared mortgage or rent, shared utilities, shared food costs. For adult children facing housing markets that have made independent ownership increasingly difficult, a parent’s property - or a parent’s contribution to a shared purchase - can provide stability and a foot on the housing ladder. For older parents on fixed incomes, a contribution from an adult child, whether financial, practical, or both, can be the difference between managing and struggling. Research shows that older adults in multigenerational households are less likely to be in poverty than those living in other arrangements. (7)

The eldercare logic is also clear. Professional care is an expensive proposition for most families - particularly those in the middle class who do not qualify for public programs like Medicaid. The median cost of assisted living is more than $74,000 a year nationally, while home health aides cost $35 an hour at the median. (8) Reliable paid home care is also difficult to find as the industry is plagued with chronic staffing issues. Families who share a home with an aging parent are not eliminating the caregiving need, but they are fundamentally changing the economics and logistics of meeting it. A son or daughter who lives on the same property can more easily monitor a parent’s medications, notice changes in mood or mobility, and respond to a fall at 2am.

Then there is childcare, and this is where the reciprocity of the arrangement becomes most compelling. For families with young children, having a grandparent at home is a resource of considerable practical and economic value. But the evidence now suggests the grandparent also benefits.

The arrangement that looks like the grandmother doing the family a favor may, on the evidence, be doing something important for her own brain.

A study published in Psychology and Aging in January 2026, drawing on data from nearly 3,000 grandparents aged 50 and over, found that grandparents who provided childcare scored higher on tests of both memory and verbal fluency than those who did not. The effect held regardless of how frequently they helped or what type of care they gave. (9) A separate large study conducted in China followed more than 10,000 older adults over five years and found that grandparents providing between one and 39 hours of weekly childcare had 24 per cent lower odds of developing dementia compared to those who provided no care. (10) Researchers point to cognitive stimulation, social engagement, and a daily sense of purpose as likely mechanisms. The arrangement that looks like the grandmother doing the family a favor may, on the evidence, be doing something important for her own brain.

None of which means that multigenerational living is simple. The biggest risk is a heavy accumulation of caregiving responsibility on one person. Research on family caregiving consistently shows that the person who lives closest to an aging parent ends up providing the most informal care. Living with a parent often creates a primary caregiver by default. The antidote is not to avoid the arrangement, but try to structure it deliberately from the start: who is responsible for what, when does paid help get added, what would need to happen for the situation to change. Siblings who are not in the house need to be part of that conversation too, and need to have a defined role rather than simply being grateful.

Financial arrangements inside multigenerational households are another source of complexity that families can underestimate. Families will typically discuss who pays for which bills, but neglect other questions. For example, what happens if a parent contributes to a home improvement like an accessory dwelling unit or renovation on a property they do not own, and then the arrangement ends or the parent dies? What are the Medicaid implications if the parent eventually needs full-time care and there have been financial transfers in the previous five years? Elder law attorneys regularly field these questions from families, and recommend that families address them before anyone moves.

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The Architecture of Multi-Generational Living

There is no single model for a multi-generational household, but the physical form the arrangement takes matters enormously. Options range from a parent moving into a spare bedroom, to a converted basement or garage apartment, to a purpose-built accessory dwelling unit on the same property. Each involves different tradeoffs between proximity, privacy, cost, and practicality.

Fully shared households:

When a parent lives in the same space as their adult children and grandchildren, the arrangement offers the most integration but also the most potential for friction when routines conflict, noise travels, and privacy becomes scarce. These arrangements can work well when there is enough physical space, when roles and expectations are discussed clearly in advance, and when the older adult keeps a meaningful degree of autonomy and a life of their own outside the front door. They work considerably less well when the move is made in crisis, without planning, and/or into a house that has no room for it.

Accessory dwelling units:

The most practical solution for families who want proximity without full cohabitation is the accessory dwelling unit: for example, a backyard cottage, a converted garage, or a basement apartment with its own entrance. A separate unit with its own kitchen and bathroom significantly reduces problems with privacy, while the caregiver commute still disappears. And if needed, the arrangement scales: as care needs increase, the proximity of an ADU can make it easier to add support without the disruption of another move.

Building an ADU typically costs between $40,000 for a basic garage conversion and $200,000 or more for a purpose-built detached unit. Costs can very significantly based on the market. This is a significant investment, though it also adds property value. Zoning has historically been the barrier to building these units: many municipalities restricted ADUs outright, but that is beginning to change. Reforms in California in 2016 dramatically expanded construction statewide, and other states have followed. AARP has a useful free guide to designing and developing ADUs, which includes advice for families trying to navigate the permitting landscape.

Purpose-built multi-generational living:

Some families are building new projects or renovating homes to accommodate multiple generations, with architects beginning to think expansively about how to rethink the single family home. A recent exhibit in Brooklyn, The House Transformed, proposed a series of concepts, including a flexible floor plan for an evolving family, and a large compound for multiple generations around a shared courtyard.

Households come in many shapes, and yet, architecture has continued to insist on one-size-fits-all.

“Households come in many shapes, and yet, architecture has continued to insist on one-size-fits-all,” says curator Mónica Ponce de León, whose own home appears in the show titled “House Overtime.” Ponce de León sought to design a home that would adapt to her family’s current and future needs — she expected to care for her mother-in-law, and she knew that her children would grow up and move out — but she also had trouble persuading a bank to lend against anything but a traditional single-family home.

The result was a mortgage-friendly three-bedroom single level house that can later be transformed into four different units, using large sound-proof doors that can be closed off to create walls. Each unit has its own entrance and walk-in closets equipped with plumbing and ventilation so they can become kitchenettes for separate apartments, potentially generating rental income. “I knew I didn’t want to design something for an average family with young children, because that’s just one point in time,” says Ponce de León. “I divorced after building the house, so now as a single mother, the house has adapted to this new way of living and I’m looking forward to growing older in it.”

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At the Edges: Other Models

Family co-residence is by far the most common form of intergenerational living, but a small number of alternatives also exist.

Homesharing programs match older homeowners with younger renters, sometimes with reduced rent in exchange for an informal care-exchange or household help. They solve problems of affordability and isolation at low public cost. The National Shared Housing Resource Center maintains a directory of programs by state.

University-based retirement communities place older adults on or near college campuses with varying degrees of formal integration. These often give residents access to classes, libraries, and events. Lasell Village at Lasell University in Massachusetts, which requires a minimum number of hours of learning each week as a condition of residency, is one example. These are not inexpensive options, but they represent a genuinely different idea of what later life can look like for people who want intellectual engagement and intergenerational contact without family co-residence.

Intentional co-housing communities, where private homes sit within a shared development with common spaces and built-in mutual support, are more established in Northern Europe than in the United States but they are growing here. These communities include those that are resident-developed and run; apartment buildings that deliberately serve mixed ages and offer social services and community amenities; and models that serve specialized populations and are supported by programs and staff. These are small in scale and concentrated in specific markets, but they point toward a model of aging in community that is distinct from both isolated aging in place and institutional care.

In next week’s Aging Almanac, we’ll explore the market for supportive senior housing, looking at the different options, levels of care, and fee structures, as well as what questions to ask when looking for a home for your loved one.

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Other articles in this series on Housing for Older Americans:

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The Fall Problem

One in four older Americans falls each year. Older adults are particularly vulnerable to falls for reasons that accumulate with age. Muscle mass declines, which reduces the strength needed to recover from a stumble. Balance and reaction time deteriorate, so the automatic micro-adjustments that prevent a younger person from going down simply do not happen fast enough. Vision dims and proprioception - the body’s sense of its own position in space- becomes less reliable. Blood pressure can drop too quickly when standing up, causing momentary dizziness. Many older adults are also managing multiple medications simultaneously, and a significant number of common drug classes such as sedatives, antidepressants, and blood pressure medications have side effects that increase fall risk. Older bodies simply have less margin for error, and they are often navigating environments full of the exact hazards they are least equipped to handle.

Falls happen most often at home, particularly in the bathroom, the staircase, the threshold between rooms, and the path from bedroom to bathroom. Part of the problem — as the Aging Almanac reported in the first article in this series — is that most American homes were not designed for aging bodies. Fewer than four per cent of homes have the three features researchers consider basic for accessibility: a no-step entrance, single-floor living, and hallways and doorways that can accommodate a wheelchair or walker. (2)

The result is that falls are the leading cause of both fatal and nonfatal injury among adults 65 and older. (3). More than 3 million people in this age group visit the emergency department visit for fall-related injuries every year and 1 million are hospitalized (4). In 2023 more than 41,000 older adults died as a result of a fall (5). The death rate from falls for this population has increased steadily in recent years, and for adults over 85, it has more than doubled since 2003. (6) Researchers point to several likely drivers: more older adults living alone in homes that are not age-friendly, higher rates of medication combinations that affect balance, and reduced physical activity.

After a serious hip fracture, roughly one in four older adults does not survive the year, and of those who do, fewer than half fully recover their previous level of function.

Hip fractures and traumatic brain injuries are among the most common and serious consequences of a fall. Nearly 319,000 older adults are hospitalized for broken hips each year, and falls are the cause in more than 80 per cent of cases. (7) After a serious hip fracture, roughly one in four older adults does not survive the year, and of those who do, fewer than half fully recover their previous level of function - which can harbor the end of living independently. (8)

Renee Levine, the 91-year-old we met in the first article of this series, has already had two serious falls in the four-story home she refuses to leave. She is representative of a dangerous dynamic: older adults who have fallen once are two to three times more likely to fall again, and for some, the fear of falling can lead to a self-reinforcing withdrawal from physical activity that increases risk further. This phenomenon is so common that physicians have coined a term for it: “post-fall syndrome.” (9)

What makes this particularly important from a housing perspective is that many falls are preventable, and many of the interventions that prevent them are changes to the home environment.

The evidence that home-based intervention works is well-established. The CAPABLE program, which was developed at Johns Hopkins and is now operating at dozens of sites across the country, pairs an occupational therapist, a registered nurse, and a handy person with a budget of around $1,300 for repairs and modifications. In trials, three-quarters of participants improved their ability to manage daily self-care within five months, with significant reductions in fall risk, depression scores, and limitations in daily activities. The estimated return on the program’s roughly $3,000 per-participant cost runs to around $30,000 in reduced medical spending, driven largely by fewer hospitalizations. Falls, in other words, are not an inevitable feature of aging. They are, in many cases, the product of a mismatch between an aging body and the home.

🎙️ Want to hear more? The Stanford Center on Longevity’s Century Lives podcast produced an excellent episode on housing and aging in place, including the CAPABLE model.

The Environment as Disability

There is a concept in rehabilitation medicine and disability studies that reframes what ‘disability’ means: disability, on this view, is not simply about a person’s impairments, but it is the product of an interaction between that person and their environment. Someone who walks with a cane is not disabled in a single-story home with wide hallways and good lighting, for example, but they may be effectively disabled in a home with a step at every entrance, a bedroom on the second floor, and a bathroom too narrow for a walker.

Disability is the product of an interaction between a person and their environment.

The implication of this is that the same person can be more or less functionally capable depending entirely on whether their home is designed to support their current needs. Meet Deborah, a 75 year old woman with severe arthritis. Deborah lives with her husband in a three story home with a narrow switchback staircase. After years of relying on a stall shower because she could not climb in and out of a bath tub, they installed a beautiful accessible bathroom, with a walk-in tub and motorized seat to lower her into the water. Bliss, but with one big problem: the accessible bathroom is at the top of the staircase. When Deborah took a fall while on vacation and broke her leg, she couldn’t get up the stairs anymore. She lived on the ground floor while she recovered: sleeping on a cot in the living room and needing help to shower in a hard-to-access downstairs shower stall. The difficulty was thankfully temporary, but illustrative of how accessible home design requires an eye to the future, not just what the resident is capable of today.

To understand the specific modifications your home may need, you can consult an occupational therapist and request a home safety assessment. The American Occupational Therapy Association maintains a directory. A full professional assessment involves a structured walk-through of every room and a functional evaluation of the resident’s specific capabilities and limitations. Home safety assessments can also be performed by a “certified aging-in-place specialist” (CAPS), a designation from the National Association of Home Builders, with the caveat that some of these specialists are contractors rather than clinicians.

For families managing a parent’s care from a distance, an assessment can be a very helpful investment for those who have the budget. A home safety assessment typically costs between $200 and $600, depending on the region and provider. For those who cannot afford a formal assessment, the good news is that the highest-value modifications are well-documented, relatively consistent across individuals, and in many cases achievable without professional help.

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Home Safety and Risk Reduction: Where to Start

Home modification guides can run to dozens of items. The areas below are where the evidence for fall prevention is strongest, so this is a good place to start. One intervention, however, costs nothing and belongs at the top of the list: a medication review. Certain drug classes significantly increase fall risk and many older adults are taking several at once: sedatives, antidepressants, blood pressure medications, and antihistamines are among them. More than 40 per cent of adults over 65 use five or more prescription drugs, a threshold at which the risk of interactions and side effects rises sharply. A conversation with a pharmacist or physician about the full medication list, specifically looking at fall risk, can make a meaningful difference before a single grab bar is installed.

For physical modifications, the highest-value changes cluster around four areas: the bathroom, the entryway, circulation routes through the main living space, and stairs.

You can download a printable checklist by clicking the button below.

Home Safety Checklist

Bathrooms:

Bathrooms are where falls most commonly happen.

• Grab bars near the toilet and in the shower dramatically reduce fall risk. They should be properly installed into wall studs, not just tiled surfaces, and at the appropriate height for the user.

• A walk-in shower or a roll-in shower eliminates the step-over barrier that trips people with balance or mobility limitations.

• Non-slip flooring or bath mats with grips address wet-surface risk.

• A handheld shower-head and a shower chair allow someone to bathe seated, which is both safer and less exhausting for people with limited stamina.

• A raised toilet seat or comfort-height toilet reduces the effort required to sit and stand, which is one of the most common moments of instability in the bathroom. Raised seats attach to the existing toilet and are very affordable, while comfort-height toilets are a somewhat more expensive replacement option.

Entryways

Entryways matter because falls happen on the way in and out as much as inside.

• A zero-step entrance, which can be created with a ramp, a graded pathway, or careful landscaping, removes one of the most common fall locations.

• Exterior lighting on motion sensors addresses the risk of navigating a dark entrance at night.

• Handrails on both sides of any steps, extending slightly beyond the top and bottom tread, give people something to hold at the moment of transition.

Circulation Routes

Inside the home, the priorities are lighting, clutter, and floor transitions.

• Good overhead and task lighting, particularly in hallways and stairwells, reduces risk at low cost.

• Removing throw rugs and loose cords eliminates common trip hazards.

• Threshold strips between different flooring materials should be flush, not raised.

• Night lights along the path from bedroom to bathroom address the high-risk early-morning hours. The bed should be at an appropriate height for easy sitting and standing.

• Furniture arranged to allow natural resting points: a chair near the entrance, for example.

Stairs

Stairs are one of the highest-risk locations in any home and for older adults with significant mobility limitations, a staircase can become a barrier to reaching a bedroom or bathroom entirely.

• Handrails on both sides, running the full length and extending slightly beyond the top and bottom tread.

• Non-slip treads on each step: carpet, adhesive strips, or textured material.

• Good lighting with switches at both the top and bottom.

• A stair lift is the most effective solution for someone with significant difficulty on stairs who wants to remain in a multi-storey home. A straight-staircase model typically costs $3,000 to $8,000 installed.

• Where the layout allows, relocating the bedroom and bathroom to the ground floor eliminates the risk entirely rather than managing it.

Kitchen:

The kitchen carries less fall risk than the bathroom or staircase, but two changes are worth treating as essentials:

(1) a non-slip mat at the sink, and

(2) a stove whose controls do not require reaching over burners.

Lever faucets, pull-out shelves, and good task lighting are lower-priority but meaningful improvements for anyone managing arthritis or limited grip strength.

The Emergency Plan:

Even with the best-prepared home, accidents happen. An emergency plan is as important as any physical modification: a medical alert device or fall detection wearable (PERS); a phone within reach; a named person to contact, and a realistic sense of how quickly they can get there. First responders recommend keeping a card on the refrigerator, or inside the front door, with the older adult’s medications, diagnoses, and emergency contacts. It costs nothing and can make a significant difference in a crisis.

We’ve developed a simple tool to help: the Almanac Care Record.

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Printable Home Modification Resources

When staying at home may no longer be safe

There is no bright line between manageable and unsafe, and the people closest to the situation are often the last to recognize when it has been crossed. In addition to falls, aging in place experts say that some of the warning signs worth attending to are: new or worsening confusion about time, place, or familiar people; missed medications or stockpiling; difficulty preparing food or maintaining nutrition; repeated incidents with the stove; getting lost on familiar routes; declining hygiene that suggests bathing has become difficult or is being avoided.

These signs do not mean it is time to leave home, but they may mean it is time to add support in the home, to get a proper assessment, and to have an honest conversation about what the person wants and what is realistic. The earlier that conversation happens, the more options are on the table. One of those options, increasingly, is living with family.

Next week, the Aging Almanac will look at the resurgence of multigenerational living: why more families are choosing it and how to make it work.

Other articles in this series on housing for older adults:

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Not everyone would agree. Renee is 91, lives alone, and is cognitively impaired. She has had two serious falls in the four story home she has lived in for 55 years, a home that has steep stairs to every room she needs and a bathtub she has to climb in and out of. She has trouble following conversations, forgets her medications and cannot keep track of her keys. She frequently calls a neighbor to help find them. After one of her falls, her daughters installed a stair lift, but Renee refuses to use it - the seat currently serves as a stand for a favorite painting. Grab bars and a shower chair in the bathroom received similar treatment. Any paid help is out of the question, though she has accepted an automatic medication dispenser and occasional meal deliveries from another neighbor. Renee’s family has been supportive of her choice to age in place, but it’s clear that Renee won’t have it any other way. She values her independence, her space, her community, and her home, and she is not interested in being managed.

Across the United States, there are millions of older adults in situations that rhyme with Renee’s - living in homes that are poorly suited to their changing bodies, and in communities that offer them few good alternatives. The houses are too big, or too vertical, or too far from services, or too expensive to modify. But they are also homes with familiar routines, decades of precious memories and neighbors who know where the keys are. Familiar surroundings do work as long as they are safe: a known environment means a layout learned by muscle memory and cues that prompt routine, supporting daily function in ways an unfamiliar setting does not. The effect is most pronounced for older adults with cognitive impairment: for whom relocation is associated with measurable declines in orientation and self-care. [1]

Between 75 and 90 per cent of older Americans say they want to stay in their homes for as long as possible as they age, depending on the survey. (2) For many, there is simply nowhere better to go.

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Stay Put or Stay Safe?

Most older Americans live in single-family homes constructed decades before accessibility was a design consideration. The dominant housing forms of the post-war decades were built for young families with stairs, bedrooms and bathrooms on the upper level, narrow hallways, step-up entries, and bathtubs requiring a leg-over entry. Now that the Baby Boomers are aging, the supply of accessible alternatives has not kept pace with a demographic shift that was entirely foreseeable. A 2023 Census Bureau report on age-ready homes found that only about 40 per cent of American homes have the most basic accessibility features: a step-free entryway and a bedroom and full bathroom on the first floor. (3) The three features that researchers consider the real baseline for accessible living — single-floor circulation, a no-step entrance, and wide hallways and doorways — are present in fewer than four per cent of American homes. (4)

Falls are the leading cause of both fatal and nonfatal injury among adults over 65 , and most of them happen at home.

All types of disabilities increase with age - almost half of those over the age of 75 report at least one (5) - and living in a home not designed for aging bodies can have serious consequences. Falls are the leading cause of both fatal and nonfatal injury among adults over 65 , and most of them happen at home: in bathrooms, on staircases, at thresholds between rooms, and on the way from a bedroom to a bathroom in the middle of the night. (6, 7)

For older adults who want or need to remain in their homes, the obvious solution is to make age-friendly modifications that could reduce the risk of an accident. The problem for many older adults living on fixed incomes is cost. According to home improvement cost data from Fixr, a basic package of modifications such as grab bars, improved lighting, non-slip surfaces, raised toilet seats and lever-style door handles might cost between $1,000 and $3,000 depending on the choices made. A more meaningful renovation that addresses the bathroom comprehensively, adds a ramp, and widens doorways for walker or wheelchair access could cost $15,000 to $40,000 or more, depending on the scope and the market. A stair lift installation costs between $3,000 and $5,000 on average, more for a curved staircase. These costs are almost never covered by standard health insurance or Medicare, though there are some States with modest Medicaid coverage for medically necessary home modifications.

For homeowners, the intuitive response is to tap home equity to fund the modifications, and for some, this is a genuine option. But the broader picture is more complicated. According to the Harvard Joint Center for Housing Studies, mortgage debt among older adults has grown substantially: the share of homeowners aged 65 to 79 carrying a mortgage rose from 24 to 41 per cent between 1989 and 2022, and median mortgage balances have risen sharply over the same period. (8) For homeowners who are also carrying debt, available equity may be more constrained than it appears. And the distribution of equity is deeply unequal: older black homeowners have a median housing equity of around $123,000, compared with $251,000 for older white homeowners. (9)

For renters, the situation is more challenging still. Renters cannot modify a home they do not own without a landlord’s cooperation, which is rarely forthcoming for significant structural changes. They are also the most financially exposed group in the older adult population: nearly one in three older renters spend more than half of their monthly income on housing, leaving them stretched too thin to absorb any major additional expense. (10) For this group, home modifications that would safely support aging in place are largely out of reach without outside help.

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Slim pickings

Older adults who feel ready to make a move because the four-story house is already too much to manage, or because they are planning ahead, find that the housing market has slim pickings for their needs. Accessible, affordable housing for older adults is scarce, frequently segregated from the multi-generational community life that most people want to remain part of, and often designed for people who are already quite ill.

Market incentives for real estate developers do not encourage building to meet this urgent social need.

Part of the problem is that market incentives for real estate developers do not encourage building to meet this urgent social need. New accessible construction costs more than standard building, but without commanding higher rents. Wider doorways, no step entries, elevators and roll-in showers all add expense because they require additional square footage and materials. Affordable housing projects are also burdened by permitting and restrictive zoning laws in much of the country. Zoning in most American communities still favors single-family detached housing at the expense of the smaller, more adaptable forms that tend to work better for older adults. Meanwhile, developers say ground-floor apartments, attached housing, and mixed-use buildings near services rarely generate the margins to make them attractive investments. The result is that when older adults want to move into more manageable housing without leaving their friends, neighbors and religious communities, they often cannot find what they need.

The demand gap is significant and growing. The population of Americans aged 65 and older is projected to reach 80 million by 2040, and the first Baby Boomers will turn 80 this year. The National Investment Center (NIC) reports that in 2024, the rate at which older adults moved into available senior housing units rose by 40 per cent, a signal that demand is accelerating. (11)

“The rising occupancies and low inventory growth is going to lead to some real-life challenges for older adults and their families in certain markets”

On the supply side, NIC estimates that the United States will need an additional 600,000 senior housing units by 2030, but in 2024, only 14,000 new units came online. Developers are breaking ground on new senior housing at the slowest rate in a decade, and they would need to start on roughly twice as many projects just to keep pace with the number of Americans entering their eighties. (12) The supply pipeline is simply nowhere near sufficient to close the gap.

“The rising occupancies and low inventory growth is going to lead to some real-life challenges for older adults and their families in certain markets,” says Lisa McCracken, NIC’s head of research and analytics.

What does exist in the senior housing market is largely concentrated at the high end, as a direct result of high development and operating costs for developers. The supply of independent living apartments, assisted living, memory care, and continuing care retirement communities has expanded significantly over the past decade, particularly pre-pandemic, but they are at a price that most families cannot sustain. In 2025, the median cost of assisted living in the United States exceeded $74,400 a year, and in high-cost metropolitan areas it was significantly higher. In New York City, for example, the median cost of a year in assisted living was $113,400 in 2025. (13)

At the other end of the market, older adults with very low incomes feel the strain of housing costs most intensely, but federally-subsidized housing for this population still falls far short of need. For these low income seniors, a financial shock such as a medical bill, death of a spouse or rent increase can remove the last financial buffer between stability and crisis. The US Department of Housing and Urban Development (HUD) estimates that there are more than two million older adult households that qualify for its Section 202 housing program for low income seniors, and are spending more than half of their very low incomes on rent, but who are receiving no assistance. (14) Waitlists for subsidized senior housing routinely run into years. For some older adults, the result is homelessness: older adults are now the fastest-growing segment of the unhoused population in the United States.

Between the private market and the subsidized floor sits the largest and least-served group, what researchers call “the forgotten middle.” These are middle-income older adults with too many assets to qualify for public programs and too few to sustain private senior housing for long. Researchers at NORC at the University of Chicago estimate that by 2033, roughly 16 million Americans aged 75 and older will fall into this category, representing around 45 per cent of all older adult households. Out of this group, current projections suggest that nearly three-quarters will not have sufficient income and savings to cover the cost of assisted living, even before accounting for medical expenses. (15)

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The Search for Solutions

Responses to the senior housing crisis have emerged at the margins. Naturally Occurring Retirement Communities are buildings or neighborhoods where enough older adults have organically concentrated that support services can be brought to them rather than moving them to institutional settings. New York State has been a pioneer: more than 60 NORCs operate in New York City with funding from the NYC Department of Aging. Village networks, modeled on Boston’s Beacon Hill Village, take a different approach: membership organizations where older adults pool resources to access transportation, home repair, and social programming that allow them to remain in their own homes and neighborhoods. There are now several hundred such villages across the country, with varying levels of service and loosely coordinated through the Village to Village Network.

Organizations like 2Life Communities in Boston have spent decades developing affordable housing designed for older adults, subsidized by Federal Section 8 public housing vouchers. Home-sharing programs — which match older homeowners with younger renters, sometimes in exchange for reduced rent or a degree of informal household help — address affordability and isolation simultaneously at very low public cost; the National Shared Housing Resource Center maintains a directory of programs by state. And a small number of nonprofit operators are experimenting with middle-market assisted living, seeking to thread the needle between what Medicaid covers and what private pay requires. Unfortunately, none of these approaches are close to operating at the scale of the problem.

The result is that staying put in the home that isn’t quite right, on the street where the neighbors know you, becomes both the preferred option and the only one. For many older adults, there is no meaningful alternative that they can afford in their community. Renee Levine, who has rejected the stair lift, the shower chair, and any paid help, is in one sense an outlier — her resistance to change is unusually resolute. The housing crisis she is living inside is one she shares with millions of others.

Next week’s Aging Almanac will examine what older adults can do to age in place safely: the home modifications that work, the programs that could help pay for them, and the importance of finding support to avoid a crisis.

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Other articles in this series on Housing for Older Americans:

On July 4, 2025, President Trump signed into law the largest cut to Medicaid in the program’s history. The 2025 Budget Reconciliation Act strips nearly $990 billion from the federal Medicaid and CHIP budget over the next decade, which is roughly equivalent to eliminating the entire Medicaid program for a year. Separately, a recent federal crackdown on Medicaid fraud has threatened to freeze funding to states deemed non-compliant. Some of the people most directly in the path of both actions are the 5.1 million Americans receiving Medicaid-funded long-term care in their homes, and the more than 600,000 on waiting lists for that care, most of whom wait nearly three years for help they qualify for but cannot access. (1)

The message from Washington is familiar: you are largely on your own and it is going to get worse.

For families who provide the vast majority of long-term care in this country as unpaid, undertrained caregivers often while working other jobs, the message from Washington is familiar: you are largely on your own and it is going to get worse.

Previous articles in this series documented how America’s long-term care system is built on unpaid family labor, how that labor often consolidates around a single person, and how that person can learn to navigate a fragmented health system on a loved one’s behalf. But what do families find when they need more help than they can provide themselves? When they turn to private home health aides, nursing facilities, or Medicaid home care programs, the picture is one of chronic shortage, low wages, high turnover, and a safety net that is fraying faster than it is being repaired.

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Ballooning Demand, Short Supply: A Workforce in Crisis

Home care is among the fastest-growing sectors in the American economy. According to PHI, the organization that tracks the direct care workforce most comprehensively, the number of home care workers more than doubled over the past decade to nearly 3.2 million in 2024, and the field is projected to add more new jobs over the next ten years than any other single occupation. (2) Demand is being driven by a rapidly aging population, the near-universal preference for aging at home, and the growing complexity of care needs that would have once required a hospital stay.

The system is chronically short-staffed, however. Turnover rates in home care are extraordinarily high: by some estimates, agency-wide turnover rates run at 75 to 80 per cent annually. In nursing homes, annual turnover approaches 100 per cent for nursing assistants. (3)

The human cost of that churn falls first on the people receiving care. Continuity matters enormously for someone with dementia or complex medical needs. These are people who depend on caregivers who know their routines, recognize the signs that something is wrong, and can distinguish a difficult morning from a medical emergency.

But the consequences fall equally on the family caregiver at home. When a paid aide fails to show up for a scheduled shift - a routine occurrence in an understaffed industry - someone has to cover. That is almost always the family member who arranged the help in the first place: the adult child who has to take more time off work, the spouse who cancels their own medical appointment, the person who was supposed to have a few hours of rest. A 2022 analysis of national data Norma Coe and Rachel Werner, both at the University of Pennsylvania, found that family members are also stepping in to care for loved ones in nursing homes and residential care facilities, regularly providing front-line support for their loved ones in the face of understaffing. (4) The labour simply defaults back to the family caregiver.

Direct care workers earn less than workers in all other occupations with similar or lower entry-level requirements in every state in the country.

The reason for the persistent shortage of direct care workers comes is two-fold: the work is physical and demanding, and very poorly compensated. According to PHI’s data, the median wage for direct care workers was $17.36 per hour in 2024. Given high rates of part-time work and unstable schedules, median annual earnings for direct care workers amounted to only $26,000. More than a third live in or near poverty, nearly half rely on public assistance programs like Medicaid and SNAP to make ends meet, and between 30-40 per cent of direct care workers are housing cost-burdened, meaning they spend more than 30 per cent of their income on rent. Home care workers fare the worst: median annual earnings of less than $23,000, and nearly 60 per cent rely on public assistance to survive. (5)

Earlier in this series, we documented just how much knowledge and skill effective caregiving requires: the clinical tasks, the medication management, the advocacy in hospital rooms, the ability to read a person’s condition against their individual baseline. But direct care workers earn less than workers in all other occupations with similar or lower entry-level requirements in every state in the country. A cashier, a parking attendant, a warehouse worker — all command more predictable compensation than the person providing hands-on personal and medical care to some of the most vulnerable people in the country. (6) The mismatch between the social value of this work and its market value exists because there is an assumption that the need for care, whether it is paid or unpaid, will always be filled.

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The Medicaid Fault Line

Most Americans do not realize that Medicare, the federal health insurance program for people over 65, does not cover long-term care. Medicare will cover a brief rehabilitation stay after a hospitalization, but not years of custodial care at home or in a nursing home. That typically falls to Medicaid, the state-administered and means-tested insurance program for people with low incomes and very limited assets. Medicaid is the primary payer for long-term care in the United States. It pays for more than two-thirds of the long-term care delivered in home and community-based settings, representing more than 5 million Medicaid enrollees receiving care in their homes. (7)

Middle-class families in need of long-term care face excruciating financial decisions. A private-pay nursing home bed costs $110,000 a year at the median, (8) while private home care agencies charge rates that many families cannot sustain. The process of spending down savings to reach Medicaid eligibility, by selling assets and exhausting retirement accounts, often leaves families with little to fall back on.

Once families qualify for Medicaid, access to care remains far from guaranteed.

Once families qualify for Medicaid, access to care remains far from guaranteed. Nursing homes, though technically required to cover Medicaid-eligible residents, maintain strong financial incentives to limit the number of Medicaid beds they offer: private-pay residents reimburse facilities at rates roughly 30 per cent higher than Medicaid pays. (9) In home care, demand already vastly exceeds what states have chosen to fund: this is the source of the more than 600,000 people on waiting lists for home care, up 14 per cent from the prior year. (10) Low Medicaid reimbursement rates drove permanent closures of home care providers in 41 states in 2024, while workforce shortages mean that the agencies still operating are stretched too thin to meet demand from any payer. (11)

One Big Beautiful Bill with Several Ugly Consequences

Families hoping to access Medicaid now face a wave of new challenges. The $990 billion of Medicaid cuts enshrined in the 2025 Budget Reconciliation law - also known as the One Big Beautiful Bill Act - will force the States to balance their budgets. Analysts say that the States, who share Medicaid costs with the Federal government, will bridge the gap by cutting benefits, tightening eligibility, and/or reducing provider payment rates that are already too low for many providers to accept.

“This would likely force states to reduce or eliminate coverage and services for people with the highest cost needs: older adults and people with disabilities who need long-term services and supports,” warned a consortium of more than 100 national aging and disability organizations in an open letter to Congress. (12) Medicaid enrollees who rely on long-term services and supports comprise only 6 per cent of Medicaid enrollees, but use 37 per cent of Medicaid expenditures. (13)

Home and community-based care (HCBS) will likely absorb the first and sharpest reductions. Unlike nursing home care, HCBS is mostly optional under Medicaid and at greater risk during budget tightening. During the fiscal crunch of 2010 to 2012, nearly every state reduced HCBS spending or access. (14) Research consistently shows that when federal Medicaid funding decreases, states cut optional benefits such as home and community-based services first. (15)

Families who have already spent down their savings to reach Medicaid eligibility will sometimes pay privately for help while they wait to obtain services, hoping to receive at least partial retroactive reimbursement from the program. That partial cushion has also been trimmed: the new law reduces retroactive Medicaid reimbursement from three months to one, meaning that even if families eventually receive coverage, they will be reimbursed for far less of what they spent during the wait.

Immigration policy has added a further squeeze to an already constrained supply of workers in long-term care. A third of the home care workforce is foreign-born (16), and that supply is tightening. According to a joint survey conducted by KFF and The New York Times, 13 per cent of immigrants said they or a family member avoided going to work in early 2025 because of concerns about drawing attention to their immigration status, a figure that rises to 40 per cent among people likely to be undocumented. (17)

Compounding all this is a federal crackdown on Medicaid fraud that has placed home care at the center of its scrutiny. In February, the Centers for Medicare and Medicaid Services singled out personal care and home and community-based services as areas of “unusually high spending and rapid growth” and deferred $259.5bn of federal Medicaid funding to Minnesota while opening reviews of several other states. (18) The Trump administration’s position and that of allied policy groups is that the decentralized nature of home care, meaning services delivered in private homes by loosely supervised workers, makes it particularly susceptible to abuse. (19)

“Withdrawing support for HCBS and pursuing sweeping structural changes without clear evidence of systemic fraud jeopardizes services that have become foundational to our country’s modern long-term care system.”

Health policy researchers have pushed back forcefully. Writing in the March issue of policy journal Health Affairs, scholars Jane Tavares, Alison Barkoff, Sara Rosenbaum, and Marc Cohen argue that the growth of home and community-based services reflects decades of deliberate federal policy and demographic inevitability, not systemic fraud. “Withdrawing support for HCBS and pursuing sweeping structural changes without clear evidence of systemic fraud jeopardizes services that have become foundational to our country’s modern long-term care system,” they warn. “It would undo more than 40 years of bipartisan federal policy designed to rebalance that system away from institutional care toward less restrictive care provided in the homes and communities where disabled people and older adults want—and have a civil right—to live.” (20)

Whatever the merits of the underlying debate, the practical effect of funding freezes and increased scrutiny will be reduced availability of services and longer waits for the people who need them.

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The Squeeze on Families

For families that cannot access Medicaid services, find no agency willing to care for their loved one, or are waiting years for a place in the Medicaid program, one option remains: hiring a caregiver privately, often informally and in cash. This gray market is widespread and entirely unregulated. Workers in these arrangements have no labor protections and no recourse if injured. Families have no formal vetting mechanism, no backup if their caregiver cannot come to work, and face potential liability as informal employers. It is an arrangement that serves nobody well but for many families, it is simply the only one available.

The new law also tightens the squeeze on family caregivers who rely on Medicaid for their own health coverage. Medicaid was the primary health insurer for more than 7 million family caregivers in 2025, according to AARP (21). Beginning January 1, 2027, working age adults who receive Medicaid through the Affordable Care Act expansion must demonstrate 80 hours per month of work, education or community service to maintain their coverage. Family caregivers are nominally exempt, but the history of work requirements in the only two states that have implemented them - Arkansas and Georgia - is not encouraging. In Arkansas, more than 18,000 people, roughly one in four of those subject to the requirement, lost coverage in under a year, primarily because the reporting process was confusing or inaccessible. (21) Research on both states shows that administrative red tape caused coverage losses among people who were working and among people who should have been exempt, including those with caregiving responsibilities. (22, 23)

Against this backdrop, there is one arrangement worth paying attention to. A growing number of States allow Medicaid recipients to hire and direct their own caregivers under what are called “consumer-directed” or “self-directed” care programs, and in many of those states, the caregiver can be a family member. For adult children or spouses who have already reorganized their lives around providing care, this creates a mechanism, however modest, for receiving some Medicaid compensation for work they are doing anyway. Evidence on these programs is generally positive: participants report higher satisfaction, care is more consistent, and the model is cost-neutral. (24) The looming cuts to Medicaid and increased scrutiny over fraud will both put pressure on these programs and some may not survive intact. But for families navigating the system now, finding out whether this option exists in their state is one of the most useful steps they can take.

What Families Can Do Now

• Get on Medicaid waiver waiting lists as early as possible — ideally before care is urgently needed, since eligibility is assessed at the time of application.

• Consult an elder law attorney sooner than you think you need to: the five-year look back period on asset transfers starts running whether or not you know about it, and planning options narrow significantly once care needs become acute.

• Ask your state Medicaid office or a local Area Agency on Aging whether a consumer-directed care program exists in your state and whether a family member could be paid as a caregiver.

• When evaluating home care agencies, ask directly about staff turnover and whether the same aides are assigned consistently. For nursing facilities, staffing data is publicly available through Medicare’s Care Compare website and should be reviewed before any placement decision.

In next week’s Aging Almanac, we will turn our attention to housing. The overwhelming majority of Americans would like to stay in their homes as they age, but very little of America’s housing stock meets even the most basic accessibility standards. We will explore the options available for aging Americans who want to live out their years safely and affordably.

Other articles in this series on Caregiving in America:

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Applebaum is a Professor of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai in New York, where she leads the newly established Steven S. Elbaum Family Center for Caregiving. The center has four areas of focus: a caregiver support clinic, research, training and education, and advocacy and dissemination of best practices. Before coming to Mount Sinai she spent fifteen years at Memorial Sloan Kettering, where she founded the Caregivers Clinic, the first program in the United States to offer comprehensive psychosocial care specifically for the family members of patients with cancer. She chronicled her professional and caregiving journey in her book “Stand By Me: A Guide to Navigating Modern, Meaningful Caregiving.”

Applebaum’s focus is the 63 million Americans who are family caregivers: a parent, partner, child, sibling, or friend caring for someone living with a chronic or life-limiting illness, disability, or mental health challenge, providing that care free of charge. Most don’t call themselves caregivers. Many don’t know how to find support. The healthcare system - organized almost entirely around the patient - has historically had little to offer them.

Caregivers are paying for that neglect with their health. Caregivers face higher rates of anxiety, depression, cardiovascular disease, and mortality than the general population. Left unsupported, Applebaum argues that caregivers become “the next generation of patients with chronic and life-limiting illnesses.” Her work is built around the proposition that this is preventable, and that the healthcare system has both the means and the obligation to act.

This is the fourth installment in The Aging Almanac’s caregiving series. The first three articles examined how America’s long-term care system is built on unpaid family labor, how that burden concentrates around a single person, and what effective medical advocacy looks like in practice for those caregivers. This week, Applebaum speaks directly to the emotional experience of caregiving — what the research shows, what her own caregiving taught her, and why she believes the healthcare system is, finally, ready to change.

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Q: Many caregivers don’t think of themselves as caregivers at all, because in their minds, they are family members first. Why is it so hard for caregivers to claim that role?

AA: This comes up constantly. First, there’s a belief that everything a caregiver does is just part of the natural role of being a daughter, a wife, whatever the relationship might be. And second, I don’t think everyone initially understands what it means to be a caregiver — it isn’t a construct most have encountered, and they often assume a “caregiver” is a healthcare professional or a paid home health aide. What we find is that once we actually take the time to define what it means to be a caregiver, people say: “OK, that is actually who I am and what I’m doing.” Some feel very liberated by the language. It’s validating. And crucially, if you can identify as a caregiver, that opens doors to support. If you’re not identifying as a caregiver, you may not realize you’re eligible for services.

Q: Research shows that caregivers often experience more distress than the patients they’re caring for, and that the caregiver’s wellbeing is a core concern for their care partners. How does that dynamic emerge?

AA: Care partners - the patients - can see everything the caregiver is doing. They’re aware of how much of their care partner’s life is being put on hold, and in many cases, they feel deeply guilty about it. And the caregiver, of course, doesn’t want to add to that guilt, so they might brush off their concern and say everything’s fine. Everyone is trying not to be a burden to the other person, and collectively, it becomes a very painful dynamic.

It’s very, very rare that caregiving is the only stress someone is facing, which means the distress becomes compounded.

And then: caregiving never happens in a vacuum. For me personally, becoming my father’s caregiver happened when my mother had just died suddenly. It happened at a critical juncture in my career, when I was transitioning from postdoctoral fellow to faculty member. It happened in the context of my parents not having planned financially. I was thrown into the ringer very quickly. And I think that’s true for most caregivers. Caregiving is superimposed on top of many other responsibilities: childcare, other elder care, work, sometimes a divorce or another death in the family. It’s very, very rare that caregiving is the only stress someone is facing, which means the distress becomes compounded.

Q: Caregivers are giving of themselves in so many ways: time, energy, freedom, finances, while also experiencing the loss of a loved one. You’ve talked about this in terms of two kinds of grief: anticipatory grief and pre-loss grief. Can you explain the difference?

AA: Yes, this is a really important distinction. Anticipatory grief is what most people recognize: you are imagining the future, dreading the death that is coming. I would imagine my father’s funeral and become very tearful. That’s anticipatory grief: we are anticipating an eventual death. Pre-loss grief is different. It’s the grief we experience over losses that happen while our care partner is still alive. My father had a neurodegenerative disease and would hallucinate for hours at a time. I lost the capacity to know, when I came home from work, whether he was going to be oriented or disoriented, whether I was going to be able to meaningfully talk to him. On the days I came home and he wasn’t present, I experienced that as a mini death. I couldn’t connect with him in reality because he was somewhere else.

We experience pre-loss grief when we realize we can no longer travel with our care partner, or make plans, or do something as small as go to the grocery store together. It can be very big or very small, but these are losses, and they do lead to grief. Many caregivers don’t allow themselves to think about these losses in terms of grief, but naming it that way is itself a powerful intervention. To say: your mother is still here, but I know you can’t really talk to her. That loss of emotional intimacy, even though the person is still present, is deeply painful. Labeling it as grief is validating in a way that can be transformative.

Q: You use the image of a crème brûlée to capture something about the emotional texture of caregiving that I think the conventional narrative misses entirely. Tell me about that.

AA: I love this metaphor because it captures what we know from the science but struggle to hold emotionally. We often talk about all the things that are difficult about caregiving: the burden, the stress, the anxiety, the depression, the trauma. All of which are real. That’s why I do what I do as a mental health professional. But we also know that caregiving provides an opportunity to connect to meaning and purpose, to grow, to learn new things about oneself, to develop new strengths.I want to be very clear: I’m not making light of caregiving. I’m not talking about turning lemons into lemonade. It’s not about being positive. It’s about saying: caregiving is an experience of great suffering. Caregivers experience profound losses — loss of the ability to plan for a future, loss of hope, loss of freedom. And yet, at the same time, despite all of that loss and suffering, caregivers can experience some of the good stuff too.

That’s the emotional experience of caregiving: at any one time, you can feel sadness, terror, anger, guilt, resentment — and love, hope, strength, connectedness. They all coexist.

When a crème brûlée is made properly, it’s crispy on the outside and creamy on the inside, cold on the inside and hot on the outside. That’s the emotional experience of caregiving: at any one time, you can feel sadness, terror, anger, guilt, resentment — and love, hope, strength, connectedness. They all coexist. And importantly, the experiences in life that are most meaningful to us are not necessarily the happy ones. I’ve lost count of the number of caregivers who have said to me, “I had no idea I was this strong,” or “I didn’t know I could do this.” Or caregivers who tell me: “I used to be shy, but because I’ve had to advocate with so many doctors, I found my voice.” I became a different version of myself because of caregiving. I would give it all away to have my father here, but I emerged a stronger version of myself because of it.

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Q: One of your therapeutic approaches with caregivers draws on Viktor Frankl’s Meaning-Centered framework. But Frankl’s work was developed in extremis, for people confronting their own deaths. How does it translate to people who are not dying themselves, but living alongside someone who is?

AA: Meaning-Centered Psychotherapy for Caregivers is one approach I’ve adapted to help caregivers remain connected to, or to reconnect with, meaning and purpose despite the suffering they’re experiencing. And a lot of what we do is help caregivers articulate very clearly what they’re feeling. There are deeply, intensely negative emotions that come up, and caregivers often feel a great deal of shame around them. Anger, for example. A lot of caregivers are very angry, and they have every right to be — angry that their lives have been put on hold, that their dreams have been deferred, that their care partner can’t do the things they once did, that the relationship has changed. Being able to express that anger with a mental health professional in a safe space, is very powerful. A lot of caregivers won’t feel safe to do that with judgmental friends or family, but in a therapeutic context, it’s the truth and it deserves space.

The ability to connect to meaning comes only after that ground has been cleared — and only, I want to be honest about this, when a caregiver’s basic needs are being met. Someone who is drowning in distress and can’t keep their head above water will likely find it too hard to access the good stuff. And for many caregivers, the sense of meaning is something that comes retrospectively, looking back, rather than in the middle of a crisis.

Q: In addition to causing emotional distress, caregiving has serious physical consequences: you’ve written about caregivers as “the next generation of patients with chronic and life-limiting illness.” What is actually happening to their bodies?

AA: Caregivers are at risk for their own major medical problems — cardiovascular disease, poor immune functioning, fatigue, sleep difficulties. Caregivers have higher rates of mortality than the general population. There are two things driving this. First, caregivers are simply not able to prioritize their own health. They’re not making time for their own appointments, their own screenings. Second, caregivers are under extraordinary amounts of stress for long periods of time. High levels of cortisol for years and years wreaks havoc on the body. That combination of very high chronic stress, lack of sleep, and not being able to keep up with one’s own medical care puts caregivers at very high risk. We have seen many caregivers who initially came to us as caregivers eventually become patients with a serious diagnosis. This is why I feel strongly that when we don’t support caregivers, we are producing the next generation of people with chronic and life-limiting illness.

Q: Your early research showed that something as simple as a screening questionnaire plus a single follow-up phone call was enough to make caregivers feel genuinely seen and supported. That seems like a very low bar, why are health systems still not clearing it?

AA: When I first proposed screening caregivers for distress at Memorial Sloan Kettering in 2010, the concern was that we would open a floodgate without having a way to address what came through. And I think there’s something in that. The healthcare system knows how to run a blood test, it knows what to do with a scan result. It doesn’t yet have a standardized procedure for a distressed caregiver, so there’s been resistance to even asking. The other factor is structural: the system is still focused on the patient. The caregiver is in most settings adjacent to that system, not inside it. But we know the power of simply asking someone how they’re doing. A social worker asking a caregiver how they’re doing helps that caregiver feel seen, valued, heard, part of the team. It is very, very simple. And we are still, fifteen years later, at the beginning of creating support systems for caregivers.

Q: What is your vision for the Stephen S. Elbaum Family Center for Caregiving? What do you want it to have accomplished in the next five years and what are you most excited about?

AA: My vision is that every caregiver in the United States has access to psychosocial support in the healthcare system where their care partner receives care. You go to the hospital with your loved one and in that hospital, there is support for you as a caregiver. What this means in practical terms is that when a patient is admitted to hospital, a caregiver is identified, that caregiver’s information is documented in the patient’s record, and the caregiver is also given their own medical record. The caregiver is screened for distress; they are asked how they’re doing. Based on the answer, they may be referred to a social worker, to a mental health professional, or to financial services. They’re followed over the course of their loved one’s illness so they’re not navigating it alone. In the next five years, our team is training up to 200 cancer centers to develop such caregiver support programs — we have National Institutes of Health funding for that work, which is itself a significant sign of the times.

The great thing about this approach - and I’ll be direct about the practical reality - is that it helps health systems build a sustainable business model for caregiver support services, because if caregivers are registered as patients, health systems can bill insurance for services. We also know that caregivers who are well supported have lower rates of depression and anxiety, and that translates into measurable health system outcomes, including lower rates of emergency room visits, shorter hospital stays, lower rates of discharge to rehabilitation facilities and nursing homes, and lower rates of mortality. A supported caregiver is better for the patient, and better for the system. That is the argument, and the data back it up.

I feel that what we’ve built is ready to grow — that there’s going to be a network and that the programs we’re seeding will find their own lives.

The NIH funding to train cancer centers gives me real hope. To me, that is an incredible sign that the field has changed. When I started this work in 2010, I was shouting from the rooftops and it felt like no one was really listening. Now, when I speak nationally about developing caregiver support programs, I see genuine enthusiasm and people understand why it matters. I feel that what we’ve built is ready to grow — that there’s going to be a network and that the programs we’re seeding will find their own lives.

Q: What do you want caregivers who are in the thick of it right now — exhausted, resentful, maybe guilty about the resentment — to know?

AA: I would like them to know that everything they’re feeling is completely normal, healthy even. I would be more concerned if they didn’t feel that way, given all of the challenges and constraints and losses they’re carrying. That’s the first thing. The second is that it’s really important to start thinking about expanding and delegating support — and to get creative about it, even if you feel entirely alone in the role. Who else can help? For some caregivers that means home health aides and navigating Medicaid. For others it means asking friends and colleagues for specific things. I had a girlfriend who came over and spent one night a week with my father so I could get a night away. You’ll be surprised at who steps up and who doesn’t: people will disappoint you, but be open to the possibility that someone in your network might surprise you, even if you’re not very close.

It’s really important to start thinking about expanding and delegating support — and to get creative about it, even if you feel entirely alone in the role.

The other thing I want caregivers to think about is that energy as a finite resource. We are pulled in a million directions, and that means being very careful about who you spend your time with. For many caregivers, that means being willing to say no to people who drain their energy — people who don’t support them, who don’t buoy them up. Create boundaries. Self-care for caregivers is not what people imagine when they hear the phrase. It’s not a spa day. It’s setting limits. It’s choosing yourself, sometimes, over someone else. It’s figuring out how to conserve and rebuild your supply of energy, whatever that looks like for you.

For readers interested in learning more from Allison Applebaum, her book, Stand By Me: A Guide to Navigating Modern, Meaningful Caregiving, is available wherever books are sold. Next week’s Aging Almanac will look at how and why families struggle to access needed services and supports for their loved ones, and how the Trump administration’s recent cuts to Medicaid funding are set to make things worse.

Other articles in this series on caregiving:

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