Even though I am an RN, nothing really prepared me for becoming a dementia caregiver when my husband was diagnosed with Alzheimer’s.

Based in the UK, but with universal content on caregiving, Victoria has created a platform with tools and resources for caregivers of all types.

The content is well organized and the community of caregivers that support each other through shared experience and deep empathy is unmatched.

I have particularly loved the monthly Community Network Discussions here, which included separate sessions for spousal caregivers and child-adult caregivers. Even though we share a lot of experiences, there are some complexities that are different. I love that as someone who cared for both my mom and my husband.

I see myself in so many of these stories. Knowing I am not alone in this journey has been such a huge blessing. If you’re a part or full time caregiver for someone you love, check it out!

I recently asked a 98 year old whether or not he wanted to have CPR if “something bad happened.” I was sure he would say no. He did not.

His cognitive function is better than mine and he has escaped all of the major medical calamities like heart attacks and strokes. In one word, he is amazing.

But his doctor said he needs to go to the hospital right away.

Because of his lab values.

Sky high white blood count, red blood cell count in the toilet and barely enough platelets to keep him from hemorrhaging.

He lives alone in the house he raised four children in. His wife died a few years ago. His children are attentive.

His doctor says he needs to see a hematologist and get a bone marrow aspirate done. He doesn’t want to. He says he wants to make it to a hundred.

Okay. That’s good enough for me, but he doesn’t want the bone marrow aspirate done. And therein lies the dilemma. Someone described it to him and it sounds awful. Totally get that.

Sigh.

He thinks he has to go see his primary care provider to get a referral to hematology. That is what “managed” Medicare Advantage programs have done to our elders. I explained that’s why the doctor said go to the hospital. Hospital doesn’t sound good either.

He wants to know if it is blood cancer what the treatment would be like.

“I want to know my options.”

“They can’t give you the options unless they know what to treat and they can’t know what to treat without the bone marrow aspirate.”

Did I mention that he was an engineer.

Then he told me they had recommended the procedure months ago.

Sigh. Not sure he’s gonna make that 100 mark no matter what it shows.

But after a long pause he agreed that he needed the bone marrow aspirate in order to know what the next step entails. I told him it’s not fun but not much more aggravating than anything else that happens in the hospital.

Sigh.

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When does quality of life decline to the point where prolonging life in dementia become unacceptable to an individual?

This question is the core of many palliative care conversations I had over my career. In people with mild to moderate Alzheimer’s Disease and their families, this decision becomes increasingly stressful over time. It is pretty common in my family for me to be asked about whether or not someone with dementia should go forward with a medical procedure that corrects a non-dementia related medical problem.

I learned a long time ago that asking someone if they are experiencing good quality of life is too broad. Might as well ask them if they are happy.

No one is happy or has great quality of life all the time.

Being a big Julia Cameron fan, I began to think in terms of an individual’s “capacity for delight.” See my previous posts on that here and here.

I am 68 years old. Four and a half months ago I had a small stroke. Initial imaging looked like it was more than one and they were on different sides of the brain. Hospitalized for three days, outpatient physical therapy, massive workup to understand why this happened. Not high cholesterol. Blood vessels wide open. No blood pressure issues.

And then, they found a patent formamen ovale or PFO—a small whole in between the two upper chambers of the heart that everyone has when they are born and most close automatically at birth. Apparently many adults have this and never know they have it.

The fact this happened after I ran full bore nine city blocks trying to catch a ferry home late at night probably shook something loose. Yeah. Not doing that ever again.

There was never a real debate about doing the procedure to close it. I’m not even close to ready to checkout but it did prompt me to look at the “Capacity for Delight” tool that I worked on with my husband.

Here is the one I filled out for myself in a 2025 post.

Here’s the one I just did this week (June 2026).

Well my mornings still start with a perfect cup of coffee cause in the Pacific Northwest that is mandatory. These medical issues I’ve had over the last six months, along with regular torrents of grief since my soulmate died in 2023, have impacted my quality of life. The things I have been able to do “all the time” or “often” in this list has dropped from seven to three over a year. When I think about my experiences over the last year generally, that fits. Do I still think life is worth living? Of course.

So what does one do? Make a new list.

Let’s take soaking in the tub. Well I’m on blood thinners and my worst fear is falling and breaking a hip. Do I love to soak in the tub. Oh for sure. But now the risk of doing that every day seems outsized to the degree of delight. I love kayaking but now I am a solo kayaker and a little more skittish. I expect that will change this summer. So I need a new list for the next year, and maybe I should do this every six months as I recover.

Here’s a rough draft of my new 10 things that bring me delight.

Having deep grandkid conversations—they are older now and have opinions on many things. This is part delight for spending time with them and part delight from getting to know them.

Writing my memoir—this has been on hold but I am back at it now. I love our story and even the difficult parts are so meaningful.

Perfect cup of coffee—natch.

Volunteering in my community—this is meaningful and provides purpose. Definitely brings me delight.

Meditation every morning—self care has gone from nonexistent to sacred time. I literally pat myself on the back.

Trail walks 3 times a week—nature is so easy to delight in. I do the 5 senses thing on these walks: what do I see, hear, feel, smell and taste? Okay, I cheat—coffee is always what I taste.

Having meals with family—their lives are super busy so if I can get an hour with all of them at once it’s a joy.

Actively socializing with other humans—socialization is known to be good for your brain and although I sometimes think about weaseling out, I do feel refreshed afterward. Sharing and learning are the delight here.

Doing fun brain-workout puzzles/games—I have come to really enjoy these.

Family genealogy—this turns on my British Detective whodunit fixation and now breaking through roadblocks is easier than ever with online databases. Bonus is my kids and grandkids will inherit it.

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Someone sent me a copy of a New York Times article with the above lead in. When I got around to reading it I was horrified to find the situation happened in my home state of Washington.

A woman who had years before worked as a certified nursing assistant feeding dementia patients when they could no longer recognize loved ones, feed or bathe themselves, or utter more than a few words, AND who had told her daughter she would NEVER want that care.

But the woman had never put that in writing.

When family found information on the “minimal comfort feeding,” the memory care unit, which the woman had moved into at age 64, flat out refused to stop hand feeding her three meals a day. So they took her home. The facility called Adult Protective Services on them.

Please forgive these run on sentences, but I just can’t stop typing.

For those of you that can access the New York Times the piece was authored by Kate Raphael on May 8th.

See the link here to see my previous post on comfort feeding. I can still remember my nonverbal mother reaching for chocolate candy and pushing other offerings away with her hands and grimacing. It’s not rocket science.

The Institute for Healthcare Improvement here in the U.S. describes the four M’s of caring for the elderly in nursing homes:

What Matters to the patient

Using only Medication that does not interfere with what matters

Managing cognitive impairment, depression and delirium

Assuring that the patient Moves safely every day to maintain function to do what matters

See the summary here

And for goodness sake if you are like me (watched my mother and husband go through dementia at end of life), document your wishes for what matters to you in an advance directive that addresses dementia. I know. I know. Nobody wants to even think about that (and believe me neither do I), but just do it.

In Washington there are a couple of places to start - here and here. If you don’t have something like this in your state, make your own and put it as an addendum to a standard advance directive and identify and have “the talk” with your durable power of attorney about your feelings on what constitutes prolonging life. Consider making a video of yourself explaining specifically what kind of care is acceptable or unacceptable and why.

Exhale.

Okay, I feel better now.

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My husband was an anesthesiologist. If there was one thing he understood it was hospital care. What mostly goes right. What sometimes goes very wrong.

I’ve written before about the two hospitalizations we had during the waning days of COVID. The ultimate loss of control. No control over your environment. No control of your body. Little control over what happens there.

Pretty clear evidence that people with Alzheimer’s undergoing general anesthesia take a brain hit. That was his field. He knew that data. Plus, they tried to make me leave him there alone when they were understaffed and he was confused and afraid.

Yes, it sucked so bad.

What I do remember clearly is that he said “No more hospitals” on the way home from the second hospitalization that occurred within a month of the previous one.

He had enough and

though he was on the downhill side of moderate dementia, he knew me and he effectively got his wishes across to me.

Now there are some that would say he wasn’t in his right mind, or he was just exhausted and he might not mean it. I knew. The way you know when your best friend is looking right at you with determination written on their face. Not asking. Telling you.

Was it hard when he continued to decline and I was so loaded with anticipatory grief that I clung to having him with me for another month, another week? Was I afraid that if I lost him, I would not survive it? Like those couples you sometimes hear about where one dies soon after the other?

God yes. When he got what I knew was likely a urinary tract infection I was nearly paralyzed by those things. It was the hardest thing I ever did.

He didn’t want to have a medicalized death. I didn’t want that for him either. And still I had to talk myself out of calling 911.

No more hospitals. It’s going to be the title of my memoir.

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Meanwhile I saw an article in AARP that quoted a billion dollars a year of lost wages because of family caregivers needing to quit work. Probably doesn’t even account for the caregivers that still work part-time and have another family member provide care when they’re at work. which I was able to do.

So today I melt the two together to talk about the cost of care for the advancing dementia patient. Somehow it is less painful to just look at the numbers and imagine the cost to families in lost wages. But psychological cost is so much more than that.

In our situation, we had long term care insurance which allowed me to work half-time to keep our health insurance for a year on the downward side of moderate dementia. As a result we were able to stay in the cozy cabin out on the Olympic Peninsula that my husband loved for at least another year after the social worker at the dementia clinic recommended that we move closer to family and medical care. And looking back, that year living on the lake surrounded by national forest, bird calls and amazing starry night skies was magical.

But after the long term insurance was gone, and a major downward slide amplified by two lengthy hospitalizations landed us in a situation common to most dementia stories—I could no longer safely care for him alone. I made the decision to cash out a hundred thousand dollar life insurance policy to do a major remodel of a section of one of our kids houses to make a place for me to care for him with help from them. It was what he wanted.

That life insurance policy was to help me with expenses after he was gone. And so here I am alone and worried about finances. He would not have wanted that. Would I have done the same thing if I had to do it over? For sure. Do I have feelings about it? Oh boy do I.

Anguish that he had to go through this horrific disease.

Rage at God/Universe.

Resentment at the U.S. Health Care system.

Waves of sorrow.

Middle of the night second-guessing.

Isolating heartbreak.

Honestly, I don’t know how I would have made it without my counselor. If you can’t afford a counselor, go to the Area Agency on Aging website and find help through there network.

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Cancer care has been revolutionized by targeted therapies since 1982 when I took my first nursing job on an inpatient oncology unit. Every once in a while I fantasize about amazing advances to come in the treatment of dementia.

Today I want to take a dive into one therapy that might target Alzheimer’s related mechanisms. I gotta start with the fact that I don’t remember ever hearing of the glymphatic system. The lymphatic system yes, with its vessels and nodes clearing fluids and toxins from the body alongside the vascular system.

Turns out there is a specific system that does that in the brain called the glymphatic system. This system flushes out toxins in the brain including amyloid beta and tau proteins using the cerebrospinal fluid pathways. This system is particularly active during “deep” sleep when the space between brain cells increases such that toxins can be “washed through.”

In Alzheimer’s Disease this sytem becomes clogged, which prevents the clearance of dementia-causing proteins.

One of the targets that scientists are looking at is the AQP4 component, known as the “master valve” of the glymphatic system. Apologize for getting into the weeds a little bit here but this structure promotes better flow of fluid during the washing out of toxins. These channels are held in place by a kind of “molecular glue.” In Alzheimer’s disease these structures are displaced, reducing the normal flow of the glymphatic system.

There are a number of research avenues looking at how to prevent this displacement from occurring including development of drugs to strengthen the “glue.” Basic science research is underway in this field. This seems like a targeted therapy with promise in treating or preventing Alzheimer’s and I think we all need to have hope for amazing breakthroughs on the horizon.

Let’s keep pushing for new innovative basic science that leads to clinically significant reversal.

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The authors looked at five studies and found gender differences in the degree of amyloid plaque build up on imaging, tau protein blood levels, and rate of cognitive decline. Women showed tau tangle pathology in more regions of their brains than men, and faster cognitive decline when tau blood levels are high.

All of the information gathered was to look at implications for early detection, monitoring and treatment that could lead to gender-specific biomarker thresholds. This is all in the backdrop of several tau blood tests that measure different subcategories of proteins (e.g. ALZpath, Lilly, Janssen or C2N) which causes confusion when categorizing what is actually a worrisome number.

I found a general “three zone” approach to categorizing tau blood levels

• Positive: Highly likely to have amyloid plaques; may not need a PET scan.

• Indeterminate: The result is unclear. Doctors may order an Amyloid PET scan or a cerebrospinal fluid sample to confirm.

• Negative: Highly likely to not have Alzheimer’s pathology at this time.

Researchers suggests that once tau protein blood levels hit a"positive" threshold, symptoms will likely begin within 8 to 15 years if left untreated.

I was in the memory care unit assessing several of those folks as a hospice nurse. In my role as a writer of all things dementia and a female, as well as an APOE4 carrier, I have sooo many questions. It makes me recall that heart disease research was focused on men for so many years until we finally understood not long ago that heart attacks look different in women.

Sigh.

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When is hospice appropriate for someone with Alzheimer’s Disease? There is an overarching feeling that because of the 6-month terminal prognosis required for eligibility, that Alzheimer’s patients are rarely eligible until near the end. A recent research brief from the Assistant Secretary for Planning and Evaluation (ASPE) within the Department of Health and Human Services shows a different reality. Find the forty-six page document and source references here.

Hospice care among individuals with Alzheimer’s disease and related dementias (ADRD)* grew from less than 5% of Medicare hospice patients in 2000 (Aldridge, Hunt, Husain et al 2022) to 23% of Medicare hospice patients in 2023 (Medicare Payment Advisory Commission 2025). The Aldridge study published in 2022 revealed 45% of hospice patients had a primary or comorbid dementia diagnosis at death. Surprise. Hospice organizations are taking care of lots of dementia patients toward the end, but when they start hospice is, well, kind of all over the place.

The 6-month hospice eligibility criteria were modeled on the rate of decline in cancer patients at the inception of the Medicare Hospice program in 1983. Yes. Forty-three years ago. Without question modern day cancer patients have a completely different disease trajectory since the advent of revolutionary new effective treatments for. And, that rate of decline is drastically different from patients with Alzheimer’s and related dementias.

This research brief indicates “these findings suggest a distinct care trajectory that may necessitate tailored approaches to meet the needs of ADRD patients.” No kidding!

So how exactly does that translate into bedside care by hospice teams? The ASPE report drew from Medicare hospice claims data on over four and a half million patients, approximately one and a half million of those patients had either a primary or secondary diagnosis of ADRD. Patients with a primary diagnosis of ADRD had an average length of stay of 92.5 days with a standard error of 149.2 versus an average length of stay for cancer at less than half that at 40.6 days with a standard error of 74.3.

If you’re like me and your statistics class was 40 years ago, I’ll attempt to translate. A high standard error in a very large sample size means there is almost no average. Unpredictable.

There were also significant differences in how often nursing staff and home health aide staff (HHA) made visits when comparing patients with ADRD and cancer patients. ADRD patients had more visits by HHA staff and fewer visits by RN staff than cancer patients. The report goes on to point out that that difference was particularly significant in the middle part of their stay which makes perfect sense to me. Dementia patients have a myriad of functional losses that involve complex personal care. Having a home health aide come in to provide personal care, change the sheets, apply barrier cream to prevent skin breakdown and let the primary caregiver rest in the other room is critical care for the patient and the primary caregiver.

The research brief ends with a shout out to the Guiding an Improved Dementia Experience (GUIDE) pilot program under traditional Medicare as a model for navigating this most unpredictable of end of life trajectories. I’ve written about this program here, here and here. It proposes an alternate payment system for dementia patients under hospice which makes SO much sense.

I hope to see this project become permanent. We need it.

*The National Institute of Aging groups Lewy Body Dementia, Frontotemporal Dementia, Vascular Dementia and Mixed Dementia as Alzheimer’s related dementias.

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As a caregiver for my spouse on the downhill slide of moderate dementia, I experienced total and utter exhaustion. I could not function, but insisted that I could. It is only on the other side of it—now approaching three years since he died—that I can see it and own it.

I never want to be there again.

I’ve always been a list maker. Sunday evening I sit down, look at the calendar for the week ahead, and organize which three things are priority items to get done. It always served me well.

My priority items tended to be things for other people or work-related.

One morning over coffee I had a moment of clarity. I needed a list to check off things I do for me. It took me a moment or two to resist the instinct to throw that idea away. so deep were my default settings.

I needed a hard reset.

I took a blank piece of paper and wrote down some things. Take a nap. Call a friend. Take a walk. Attend a social event. Say no to something you think you should do but don’t really want to. Ask for help.

I placed three boxes in front of each item so I didn’t think I needed to do all of them. I could pick and choose. Maybe I only do a social event every 2 weeks which could be just meeting a friend for coffee. Maybe I call a friend twice a week. In the beginning I didn’t give myself a target number for the week. The first few times I checked off one of those boxes felt a little weird, but soon it felt good—just like checking off those priority things I always checked off.

Wait a minute. I could feel the same way I did when I checked off a box for external things as I did when checking off something I was doing for my self? Whaaaat?

It was disorienting at first, then a bit selfish, and ultimately empowering. Who knew?

I now have a target of five checked boxes per week. Probably should be twice that but hey it’s a start!

Your list might look a lot different than mine and that’s okay. I know it looks simple but it is one way to beef up your self-care.

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The function of the amyloid targeted therapy is to clear amyloid. Amyloid plaques are found with Alzheimer’s, but not with other kinds of dementia.

Alzheimer’s Disease begins biologically many years before clinical symptoms occur. It starts with amyloid accumulation in the brain without symptoms, then later, tau tangles are present, but the anti-amyloid drugs have only shown to be effective at slowing down the decline in the early stage of the disease.

This particular article builds on the trend over the last 7 years on biological staging of Alzheimer’s Disease.

In 2018, the National Institute on Aging (NIA) in collaboration with the Alzheimer’s Association defined the first framework for diagnosing Alzheimer’s based on pathology, referred to as the ATN system.

Represents Biomarker Examples

A Amyloid-β Plaques Amyloid PET imaging; CSF Aβ42​ or Aβ42​/Aβ40​ ratio

T Tau Tangles Tau PET imaging; CSF Phosphorylated Tau (p-tau)

N Neurodegeneration Structural MRI (atrophy); FDG PET (glucose metabolism)

CSF Total Tau (t-tau)

All of these required advanced imaging plus at least one lumbar puncture (putting a needle into the spinal canal and withdrawing cerebrospinal fluid).

The Alzheimer’s Association recently built on that work by reframing biological staging into biomarkers that become abnormal in the early stages of the disease categorized as core 1 biomarkers (amyloid PET, amyloid CSF levels and the newer plasma ptau217 test—a blood draw which I covered in a previous post). The core 2 biomarker is Tau PET, the most reliable biological indicator in the later stages.

Tau-PET imaging was the focus of the project outlined in the JAMA article referenced above.

The article describes a Swedish study focused on the relationship between clinical staging (presence of cognitive and functional decline) and the newer biological staging. Eight hundred thirty-eight patients who were all positive for amyloid beta but differed in their tau PET uptake. Only thirty eight percent of patients had clinical symptoms that matched their biological staging. Fifty one percent of patients had more advanced clinical symptoms than their biological staging would indicate. Eleven percent of patients had more advanced biological staging than their clinical symptoms would have predicted.

Although this is only one small study, the findings are consistent with what we know about the multifactoral nature of dementia. Those with more advanced clinical symptoms than biological likely have other factors contributing—cerebral small vessel disease called vascular dementia, frontotemporral dementia (FTD). Lewy Body dementia, limibic predominant age-related TDP 43 Encephalopathy(LATE) or other non-Alzheimer’s pathologies.

Those with more advanced biological staging than clinical symptoms are said to have resilience to Alzheimer’s Disease, a condition said to be associated with higher education, more social interaction, having a “sense of purpose” and many others.

In the Swedish study patients in that group had thicker temporal lobes at autopsy - a finding the authors point to as a finding that could reflect resilience.

So the take home message—over half of these folks had Alzheimer’s (confirmed by + amyloid PET) plus other kinds of dementia. Those other components of brain deterioration won’t be helped by amyloid targeted therapy. But the tau PET is still relatively new. As of 2026 Medicare has expanded coverage for PET scans related to Alzheimer’s, with tau PET scans “covered at the discretion of local Medicare Administrative Contractors.” A multidisciplinary group is working on updating “appropriate use criteria” for tau PET scans. Find the link to that info here.

Bottom line is the science is moving toward better and better diagnostics for biological staging, that when paired with clinical symptoms, will give providers the information they need to choose the best possible treatment plans in the next few years.

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Today I got a Christmas package in the mail addressed to Mrs. Stuart Du Pen.

Sigh.

This is my third Christmas without my husband. It was not the fact that my own mother was always addressed as Mrs. James Thomas (1921-2007), or many of my generation (1958 - ?) spent at least half their life being identified as someone’s Mrs. before we burned out bras. Instead, as I look at the label, I say out loud, “I want you back.”

And then I stand there and cry. As I cry the thinker part of my brain says —

I would take him back right now even in the condition he was in.

Okay okay. Hold on. Then the broken heart part of my brain says —

What? No, you would not want him to be alive in the severe stage of Alzheimer’s.

Thinker: No I do want him back. I can take really good care of him and he would still be here with me

Broken Heart: You miss him. He would not want to be back alive in that condition. This is grief.

Thinker: I don’t care. I do want him back. I do. I do. I do. Leave me alone.

Broken Heart: Go sit your ass down and right about it.

Sigh. The schizophrenia around advocating for someone you adore to die the way he wanted (at home, in the bed next to me), and not wanting them to die at all. And hey, you weren’t informed ahead of time how empty and meaningless life without them would feel. Not all the time, not even most of the time, but sometimes the loss is so so so agonizing, it feels unsurvivable.

It isn’t. But it feels that way. Breathe. Just breathe through it.

Broken Heart: His love accompanies every breath.

And I’m crying again

.

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It seems that soon primary care providers could rule out Alzheimer’s Disease with a blood test. The FDA recently approved the Elecsys ptau 181 test to do just that. The target population for the test is patients with mild cognitive impairment or early dementia, not those with normal cognition, and it requires a prescription.

The pre-FDA approval testing indicated the probability of a negative result in someone who doesn’t have Alzheimer pathology was 98%. This test is not as highly reliable as the ptau 217 test for finding those who DO have the disease.

As an aside I have a friend whose husband is sure she has it and for her a negative test might shut him up at dinner parties.

This test might even have an advantage for people who are not inclined to opt in for the currently available anti-amyloid drugs. Why? Because if someone has signs of cognitive decline and it’s NOT Alzheimer’s, that could expedite the primary care physician looking at other sources for that decline in the same way they rule out conditions every day in primary care.

Why would someone not want to go the antiamyloid treatment route if they have mild Alzheimer’s? The diagnosis is associated with so many other contributing factors other than amyloid plaque buildup and some percentage of patients with documented amyloid plaque will never develop the disease. I literally just read an secondary analysis article in JAMA Neurology (Vol 82, No 12) this morning that confirms lower levels of amyloid after treatment with donanemab correlated with slower cognitive and functional decline. No test can predict whether people with normal cognition are destined to develop Alzheimer disease.

At first glance, if someone knows they would not want to take those drugs, it probably doesn’t make a lot of sense to take the test since the target of those drugs is in fact what these tests are measuring.

The thing is, we just don’t know enough yet.

Donanemab has the best extended quality of life data at roughly 30% more time in the mild stage before progression—five to six months in the clinical trial that led to FDA approval. Some would say six months is not nothing—it’s travel to a bucket list place, being functional at a grandkids wedding, finishing a family history; while others are quick to wave it off as six months of frightening uncertainty and say no thanks. And the side effects of brain swelling and microbleeds are not insignificant, particularly for people with two copies of the APOE4 gene.

That could all change as we start to get findings from the extended trials of both lecanemab and donanemab that could provide a better look at outcomes.

So what happens if the test is not negative? Here’s where it gets interesting.

“[I]t is important to understand this test is designed to rule out the presence of amyloid plaques,” Joanne Pike, DrPH, Alzheimer’s Association president and chief executive officer, noted in a press release. “It is not a test that will give an Alzheimer’s disease diagnosis, nor is it a standalone tool for detection.”

Standard workup for Alzheimer’s includes neurocognitive testing, obtaining a sample of cerebrospinal fluid (a lumbar puncture) to measure amyloid, and a specilized PET scan, all things that are generally only available at major medical centers or specialized neurology practices. Access to those specialty clinics is woefully inadequate for rural americans.

The long term answer seems obvious. We must train primary care providers to diagnose and treat Alzheimer’s Disease. This is already a robust discussion in public policy circles, chiefly pointing out there are around 11,000 neurologists in a country of 342 million people, so referring everyone for specialty treatment seems impossible for the near future.

These tests will push medical education and health care systems to build strategic plans around fundamentals that can be layered into primary care. Things like the use of telehealth expansion in collaboration with the Alzheimer’s Disease Research Centers, in the same way regional cancer centers developed the Tumor Board platform that still serves patients well, and a federal commitment to roll out the Guiding an Improved Dementia Experience (GUIDE) model currently being piloted under Medicare.

Bring. It. On!

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I’ve been consumed with moving this past week. In the process of unpacking I found some of my writing on the downhill side of the moderate stage of my husband’s Alzheimer’s.

What is it like to experience the connections to past memories break apart? I mean the short term memories are one thing, but long term memories are literally your life. For Stu, old memories became intermittently opaque.

One day, no different than the days before, he looked at me, urgency in his eyes.

“I love you so much. I love you so much. I love you so much. I never told you how much I love you.”

I ran to his side.

This was unexpected and not true. He told me often and we never ended a phone call without saying “I love you,” a habit that soon became standard with our kids as well.

“I know you love me. I know you don’t want to leave me.” I put my head on his shoulder and one hand over his heart as I had done so many times before.

“After all the times I messed up. I don’t understand how you could still love me.”

No clue what memories he was trying to access. Putting his career ahead of his family? Recognizing he repeated the mistakes of his parents? Not being a good enough father? husband? man?

I defaulted to our love language which was laughter.

“I don’t know, but I do.” I laughed and kissed his cheek.

He began to cry.

“Oh honey, you are the love of my life. I will love you forever.” Then I reminded him of all the patients he had helped. Of all the doctors he had trained. Of how much joy he had brought to my family.

How he was my hero first, then my soulmate, and when this life was over I would find him on the other side.

He cried some more, and went back to repeating “I love you so much,” until we both fell asleep.

Today, two and a half years after he died, I can’t help but wonder if some deep foreboding feeling of regret, detached from specific circumstance was causing him existential distress.

And I hate that for him. I can only hope that when he woke up after our nap, that feeling was gone.

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This week I discovered a group of researchers that developed a goal attainment scaling (GAS) approach to helping people with early stage dementia define and attain their goals. It was funded by the Patient-Centered Outcomes Institute (PCOI), a nonprofit Washington D.C. based organization established by Congress in 2010. You can find the report on this project here.

The researchers utilized experts in the field as well as focus groups of both patients in early stages of dementia and their caregivers to develop a consensus inventory of goals in five categories: medical goals, quality of life - physical goals, quality of life—social and emotional goals, goals for accessing services and support, and caregiver support.

Examples of Medical Goals:

· Don’t get burdensome medical care

· Don’t take medicine with side effects

· Stay out of the hospital or emergency room

· Have doctors who work with us

· Receive needed dementia care

· Have other medical conditions managed

· Get adequate nutrition

Example of Physical Quality of Life Goals:

· Be physically active

· Able to do self-care activities (e.g., toileting, dressing, bathing) without help or without more help than is currently needed

· Able to do household and daily activities (e.g., cooking, shopping, finances)

· Be in charge of household daily activities

· Able to do recreational activities (e.g., hobbies, reading, playing games)

· Able to work or volunteer

· Able to drive or use other means of transportation (e.g., bus, rail, getting a ride)

· Able to travel

· Be physically safe (e.g., avoid household hazards or getting lost)

· Does not fall or decreases frequency of falls

· Get adequate sleep

· Die peacefully

· Live as long as possible

Examples of Social and Emotional Quality of Life Goals:

· Able to socialize with family

· Able to socialize with friends and others

· Able to maintain a relationship with a spouse or partner

· Not be taken advantage of by others

· Control agitation or aggression

· Control depression or anxiety

· Control delusions or hallucinations

· Control other troubling behaviors

· Be happy

· Keep your mind stimulated

· Be alert

· Be respected for your spiritual/religious preferences

· Able to live at home

· Not be a burden on your family

· Maintain autonomy and independence

· Have a better understanding of dementia

Examples of Goals for Accessing Services and Support:

· Have providers who understand my cultural background and/or speak my native language

· Have legal issues (such as power of attorney for healthcare) in order

· Have end of life plans (such as an advance directive) in order

· Feel financial resources are not a barrier to care

· Move to a more supportive setting (e.g., move in with family or to a nursing home or assisted living)

· Have adequate caregivers

· Have access to community services for dementia

Examples of Caregiver Support Goals:

· Able to deal with the stress of caregiving

· Receive support in coping with the stress of caregiving

· Minimize family conflict about managing his/her dementia

· Control my frustration about his/her behavior

· Feel confident in managing dementia-related problems and behaviors

· Have more free time for myself

· Have respite care available

· Maintain my own health

· Keep things as they are now

Patients were asked to select goals that were relevant to them and rate them on a scale of “not important at all,” “somewhat important,” “very important,” or “extremely important.”

At their six month and twelve month followups they were asked to rate the degree to which those goals had been attained on a scale of “much less expected,” “somewhat less than expected,” “expected,” “somewhat better than expected,” and “much better than expected.”

At the end of the year long study, about a third of participants indicated their goals were met as expected, about 25% said their goals were met less than expected, and 17-24% reached their goals better than expected.

I remember going to see my husband’s dementia provider every six months and feeling like he took cognitive tests and I filled out caregiver distress surveys, but this process seems like something that would’ve felt like a more constructive review.

I can imagine us looking at the goals we had chosen as most important, then discussing with our provider whether we were meeting our goals. If nothing else, a very important goal being met much less than expected should trigger a conversation about how to address that issue before the limited time that doctor, nurse practitioner or social worker had to spend with us. That by itself seems transformative.

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He picked “Do Not Attempt Resuscitation” which I totally understood. Both his mother and my mother had lived with advanced dementia for many years and that was an easy call. He had selected no medically assisted nutrition by tube, and do not use antibiotics except when needed for symptom management. Somehow I comfortably put those things in a compartment in my mind labeled “non-emergency stuff.” Feeling like I would know when to pull that out and wave it at the doctors.

But when he checked comfort-focused treatment in the middle section—Medical Interventions: Person has pulse and is breathing—I panicked. That’s really the best word for it.

The other choices were Full Treatment - primary goal of prolonging life by all medically effective means, and Selective Treatment - goal of treating medical conditions while avoiding burdensome measures.

The fine print under Selective Treatment includes IV fluids, cardiac monitor, but Do Not Intubate. May use less invasive airway support (CPAP, BiPAP). Transfer to hospital if indicated but avoid intensive care if possible.

So it was just the three of us sitting in the Memory Care Clinic—the neurologist, my husband and I, looking at this piece of paper. Seconds ticked by. We were waiting for the doctor to sign the orders. I suddenly blurt out, “I guess I’m a little surprised he picked comfort care at this point.”

The doctor followed quickly with “I was thinking that same thing. I’m pretty sure you have a lot of quality time left. Do you wanna think about that?”

He looked at me and back down at the paper and started crossing out his first choice.

“You’ll need to initial and date the change Stuart.” The doctor said.

My husband was an anesthesiologist. He knew a lot about aggressive treatment at end of life. He had described the trauma of trying to resuscitate someone who was beyond saving. He had done it and years later been able to describe the scene vividly. I had also seen it when I worked in the intensive care unit.

I look back on that switch and wish I had kept my mouth shut. It was his choice. I will always conclude that he switched if because he saw anguish on my face.

The POLST form is something that was intended for decision making for terminally ill patients. It doesn’t say that anywhere, but like hospice, a lot of tools we use today originated with the cancer disease trajectory of the 80s and 90s when many cancers were diagnosed late. People living with dementia have a trajectory that is years long.

Here’s how I see the POLST form in 2025.

If you want to have CPR and a full court press, you don’t need a POLST. That is the default.

If you have mild cognitive impairment or mild dementia, you should make a decision about whether or not you want “everything done,” which is the question you will get upon entering the emergency room. If you do not want that, you definitely need a POLST form and a Durable Power of Attorney who is educated about your wishes.

If you are clear you want an “early exit,” in other words, you know you do not want to be alive to enter the severe stage of the disease, you will need to wrestle with comfort-focused care only or selective care.

Comfort-focused care is self-explanatory for the most part—no life prolonging care—although there is wiggle room for things like antibiotics if the infection causes discomfort that can’t be managed otherwise.

Selective care includes things like blood transfusions, intravenous fluids, airway support (but not intubation), aggressive medication management for things such as heart or kidney failure, and antibiotics.

I used to tell my cancer patients to review their POLST form every 2 years.

I did not do that. If I had, things might have gone smoother. As it was, in 2022 my husband got hospitalized the first time for a week. That was the first time I was informed the POLST form is only for outside the hospital. When you enter the hospital and have procedures done, full treatment is the default unless your hospital doctor writes a Do Not Resuscitate order. The results of treatment done during that hospitalization led to a second hospitalization for a week about a month later.

We went through what in palliative care terms is called medicalization at end of life. The bottom line being this idea of “selective treatment” is an opaque quagmire. The twists and turns are unpredictable, the vulnerability of both the dementia patient and the exhausted caregiver can not be overeestimated.

Do I wish I would’ve done something different? Yes, I wish I had followed my own advice. Review the POLST form every two years.

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It is hard to imagine how you survived those two hospitalizations near the end of Stuart’s Alzheimer’s journey. I know those memories leave you second guessing. That somehow, you should’ve made different or better decisions.

If I could be there with you in 2022, I would hold you tight. Tell you what a great job you did under soul crushing conditions. You never lost sight of your core mission—to take the best possible care of Stu. You clearly adored him, even when his diseased brain took him to dark and humiliating places.

In that moment on the phone when you got the call Stu was having signs of a stroke, you knew stroke was an acute event. Data popped into your head. Eighty percent of strokes are caused by clots, the other 20% by bleeds. Once they ruled out a bleed, a clotbuster, given in a short window of time, would give him a good chance of being back to “normal.” Your daughter-in-law Marie asked if she should call 911. After the slightest hesitancy, you said yes.

At the time, he still knew you, still enjoyed dinners with the family, you still worked on jigsaw puzzles together, and he still held you in his arms at night.

I know it is easy for me to see that from three years out, but it was the right call.

When By the time you got to the house, four big guys from the fire department had crowded in into the mother-in-law apartment you remodeled in your son’s trilevel home. The medic was on the radio to the local ER and had already given him aspirin. You pointed to the POLST form on the refrigerator indicating no CPR. The medic asked both you and Stu if you wanted to go to the ER. You both said yes. Your nurse spidey-sense and your husband’s gut response were synchronized. As was often the case in your relationship.

But you had a friend who was an ER nurse, so so you knew staffing issues from COVID persisted., But that was just background noise. You were focused on Stu. He had that frightened and confused look in his eyes that broke your heart. Plus, there was no way you could have foreseen what would happen once the two of you were on the healthcare system conveyor belt.

Coming in by ambulance as a suspected stroke, he was taken back directly, bypassing a crowded waiting room. The ER doctor came in shortly to examine him and found all his stroke symptoms had resolved. The aspirin had worked! You felt like you could breathe easier.

He was sent to the CT scanner where they confirmed no bleedbleed. And because the symptoms resolved, no need for the clotbuster. What happened next plays out in your head as a missed opportunity to rewrite the story of Stu’s last days. The docER doctor came back and recommended an ultrasound of his carotid arteries since he was “already here..” As if that choice was offered as a convenience.

You so wish you would’ve taken him home at that point in the story. But hindsight is 20/20, and that kind of magical thinking is rarely useful.

Stu was foggy at that point which is common after a transient ischemic attack. You tried to follow the logic of the recommendations in your nurse brain, while bending that logic toward helping your husband be okay a little bit longer. It was the job of the professionals in the room to coordinate the treatment plan, incorporating what was important to Stu.

Did the ER doc give a thought to whether Stu would want to do anything about it if there was a problem with his carotids? Probably not. After all, it was the next thing on the stroke algorithm. Did you think two or three steps ahead on that algorithm? No.

And you ask why not?

Oh Anna, it’s so easy for me to see why not in 2025. You were exhausted from full time caregiving and trying to hold down a part-time job to keep health insurance. Overwhelmed with relief that the symptoms resolved and that he wasn’t going to die that day. The situation so consistent with the rollercoaster emotions omnipresent for dementia caregivers, on the heels of relief came the scary news that one carotid was “completely blocked” and the other “80%” blocked. The ER doc recommended a consult with the vascular surgeon. He explained these blockages were managed with non-invasive stent procedures, not big open surgeries.

There was no conversation focused on other options. But from where I sit now, the emergency had passed, and it was clear he had developed collateral circulation (blood vessels that detoured around the blockage). Meaning that doctor could have discussed that he was at high risk for a stroke, but perhaps he could be put on an aspirin regimen and rely on the collateral circulation to do what it had clearly been doing for years.

More glaring was that there was no hint of recognition that Stu’s major medical condition was Alzheimer’s Disease, well into the moderate stage. That should have triggered the need for the critical but difficult discussion around goals of care. The very clinical skillset you practiced at the bedside for years.

HOW COULD YOU NOT BRING IT UP AND ASK WHAT THE OTHER OPTIONS WERE?

Because that was not your job! That was the doctor’s job!

Stu’s medical records were at his fingertips. That was one of the reasons you selected his primary care doctor from the organization that ran the hospital. At the very least he could have given the two of you the option to follow-up with the vascular surgeon as an outpatient.

But the conveyer belt was in motion. Stu was seen by a kind vascular surgeon who reassured us the procedure was safe and indicated. surgeon He was admitted him to the hospital. After Stu settled in, the nurse came in and said you would have to leave because visiting was limited to one person per day and 4 hours max. Her young face was lined and pale, as if she had been without sleep or sunlight for days. You just stared at her.

The sounds in the hallway seemed to mute. The staff in white coats passing the doorway moved in slow motion. The density of the air moving in and out of your chest felt thick. You felt light-headed.

Somehow you managed to say, “but my husband has Alzheimer’s,” before tears began to well up. Seconds passed as you struggled to push through.

“I can’t leave him overnight. He will get confused and try to get out of bed. He has been falling at home because he forgets to use his walker.” Pain now danced across your forehead.

“We’ll take good care of your husband Mrs. Du Pen. I’m very sorry, but these rules are mandated by the state,” she said.

HOW COULD YOU NOT REMEMBER THAT COVID PRECAUTIONS WERE STILL IN PLACE?

You were in survival mode, that’s how. The fight or flight response, but let’s just add on physical, mental, and emotional exhaustion. Not only was adrenaline being pumped into your system, but the overwhelming exhaustion inhibited your ability to think straight.

Despite all of that, you were able to make the case to the nursing supervisor that there was not enough staff to prevent Stu from falling in his confused condition. That you were an RN fully trained in COVID precautions and it was clear there was not having enough staff to keep him safe. They caved, but only after you had the physician write an order in the chart.

What followed was a week-long hospitalization. The surgeon only did the procedure one day a week—Thursday. He was admitted on Monday. You slept on the hard windowsill in his room and got dirty looks from the staff. “His wife’s a nurse,” they would whisper.

After the stent was placed, he went on blood thinners—which must have been discussed but you have no memory of that. Three weeks after he was discharged from the hospital Stu had a GI bleed which led to another weeklong hospitalization.

Stu suffered steep downhill slides in cognitive and physical functioning after each hospitalization.

He would not have another vascular event, but the Stu who came out the other side of those two hospitalizations had far more bad days than good. You blamed yourself.

Oh, honey. From where I sit now, you were amazing in an impossible situation. Here’s how I see it. The culture around dementia care was at work in the hospital—look away because it’s too hard to talk about. The distress dementia caregivers experience with anticipatory grief amplified by the heavy burden of responsibility was and is paralyzing. Top that off with three decades not being even close to enough time to live the extraordinary love story the two of you forged together.

Despite all of that, and against all odds, you manifested his last wish—to die at home and continue sharing a bed with you. Because the most important thing in the world to him was you.

You did great!

Want more like this? Visit Letters from a Caregiver on my colleague Victoria’s Carer Mentor Substack here.

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Back when my mother had dementia twenty years ago there was a magazine called Reminisce. I remember reading her stories from the time of her earlier life which would often bring a smile to her face. I looked for it but it is only found on ebay and such today.

A I sat looking at old covers of the magazine on google, I realized I had reminisced with my husband often during the good days when his long term memory was very much intact. I had been a rabid scrapbooker in our early relationship and so there were many 12 X 12 scrapbooks that included not just photos, but airline tickets, hotel receipts, tour itineraries, theatre playbills, and national park trail guides.

Sometimes we would just go through the scrapbooks page by page. Other times I would start with asking what was your favorite camping trip and then we would do a deep dive into stories, pictures or mementos from that trip. Then it would be my turn to pick a trip, or concert, or AirBnB and it would be my turn to recite my thoughts.

Before we knew it, we had been transported out of our sadness or frustration or downright despair, into joy, laughter and gratitude. If only for an hour or two.

So very grateful for those adventures. Doubly glad those adventures brought us a second dose of joy together.

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My neighbor’s elderly father is getting what is called “concurrent care” which allows him to use regular Medicare/Medicaid and VA Health Care simultaneously. This allows him to receive comfort focused hospice care in a Skilled Nursing Facility, without having to give up disease-focused treatment. His care is covered 100% between the two. She was shocked (and greatly relieved) to find out he had that coverage under his VA benefits.

I immediately thought about my father and my husband—both veterans. How is it I did not know about that? Well it only came about after the VA launched its “End-of-Life Care Initiative” in 2009. Read more about this here. This project led to expanded access to palliative and hospice care for those with late stage disease that chose continued disease-directed therapy as well.

I immediately thought about all the late stage cancer patients I used to see who were on the newer targeted therapies with a stage 4 diagnosis. These new drugs can “control” advanced disease for months or years. But by definition patients are not eligible for regular hospice while on active treatment. I was a palliative care nurse in the clinic where we did our best to keep on top of pain and symptoms, while offering social work and chaplaincy services in the clinic.

But it was not the same as hospice services in the home which are led by hospice physicians, pharmacists, bath aids, as well as social workers, chaplains and of course nurses who provide case management and navigation throughout the experience. Having hospice and providing active anti-tumor therapy was not a thing.

The other area where traditional hospice and disease-directed therapy have co-existed for awhile is pediatric patients with serious illnesses. Private insurance case managers have been innovators in this area for a long time.

An article in the Journal of the American Medical Association discussed the history of hospice billing and the increasing interest in finding a solution that encompasses 21st century medicine here .

If your loved one is a veteran, they could have benefits that may include concurrent care. Find the official VA fact sheet here.

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Regardless where you are on the spectrum of opinions on this choice, it is something that people choose more frequently these days. Artificial feeding has been a controversial topic in healthcare since the eighties, but over time declining artificial feeding and hydration has become an established component of advance care planning. The fact that nutrition scientists proved at the end of the twentieth century that methods like parenteral nutrition did not replace regular food in cancer patients, and in many cases produced more harm than good.

But of course, not eating and drinking by mouth seems and is a bit more intentional. And that’s the whole point. The patient themselves, knowing the natural course of the disease, perhaps having seen it in their own family, is saying I don’t want to keep going after my existence is full of suffering.

Over on Reddit there are always a group of people that feel it is starving someone which is tantamount to murder and only God can determine when someone dies. Just as loud on the other side folks argue the ethical principle of autonomy is a foundational component of being a sentient being, therefore a human right.

The bottom line? How one traverses end of life is a personal decision that only the patient can make. It may make some family members uncomfortable. And that’s okay. They can choose to not be on the team of people that support their loved one through voluntary stopping eating and drinking, but they don’t get to veto it.

One of many thorny complexities involving late stage Alzheimer’s Disease remains the uncertainty of when one will lose capacity to make decisions for themselves. In our case, my husband was in the moderate stage of Alzheimer’s, then after two major hospitalizations within two months, had declined rapidly to Stage 6e—the cusp of the severe stage.

It can happen that fast. These end of life decisions have to be explored early in the course of the diagnosis.

I now personally know of three Alzheimer’s patients who chose the VSED path. All made the decision in the moderate stage of the disease, executing VSED advance directives, recording videos of why they chose this route, such as being able to avoid their own suffering and prevent suffering for their loved ones, reassuring family that they were not depressed and had given it lot of thought. They set-up hospice care and designated who they wanted to be there for their last days.

All three of the folks I know of died within 2 weeks. The End of Life Washington organization has a great deal of information about VSED, so I’ll drop the link to that page here.

I have now seen my mother and my husband fall to late stages dementia. VSED is an option I may very well consider if my time comes.

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