Personal Blog #40 … An AD Spouse Caregiver’s Emotions, Part 4 … Ecstasy, Embarrassment, and Envy … 12/27/24

Ecstasy …  One dictionary defines ecstasy as “an overwhelming feeling of great happiness or joyful excitement.”  Once my late wife’s condition progressed from moderate to severe stages of AD, I was no longer able to experience any feelings of ecstasy.  That was a feeling I could no longer relate to.

I was not happy or excited about anything while watching my wife decline further and further.  How could I feel overwhelmingly happy with Clare now living apart from me in an assisted living community … and with Clare slowly dying right before my eyes.

Overwhelming happiness would have described my feelings if I were to have had even one more visit with “Clare being Clare” again … my best friend, my lover, my wife.  For 50 years, Clare was the one person I shared everything with.  Clare was the first person I went to when I needed anything, when I needed to talk about something, when I needed advice about something.  When I just needed a hug.

If I were somehow able to have had just one more visit with “that” Clare, then I would have been able to experience ecstasy again.  Such a visit would have provided me with an overwhelming feeling of happiness.  Such a visit would have brought me an overwhelming feeling of joyful excitement.

But I was never able to experience that emotion again … not even once during Clare’s final few years.  Those days were long gone … forever.

Ecstasy … an emotion I was unable to experience once Clare entered moderate to severe stages of AD.  It is very difficult for AD caregivers to experience ecstasy when their soul mate is fading from their lives.

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Embarrassment … Clare was embarrassed about what was happening to her and she didn’t want anyone to know her diagnosis.  Not even our closest friends.  Clare was embarrassed about how much she was forgetting.

She had always been incredibly articulate.  And she enjoyed socializing so much with others. She was so active in numerous volunteer activities.  But as her AD symptoms worsened, she started pulling back.  That alone was not easy for her to do.

Friends could see that something was wrong, but Clare just refused to tell anyone that she was in the early stages of AD.  No matter how often I suggested that telling others might make her life easier … that others would then understand why she was forgetting so many things, and why she was often confused … Clare refused.  She was too embarrassed.  So … although many of our friends could easily see that something was wrong” with Clare, she never wanted to talk openly about AD.

I was never embarrassed about anything that was happening to Clare.  She couldn’t control what AD was doing to her, so there was nothing to be embarrassed about.  But I could never convince her of that.   

At a certain point, it was left to me to tell family and friends about what was happening to Clare … and it came as no surprise to anyone I told.

Embarrassment … an emotion that too many people with AD needlessly experience.

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Envy … For several years, I was envious of some of my married friends.  Sounds ridiculous, doesn’t it?  But as I saw my happily married friends looking forward to bright futures together, and knowing that Clare and I wouldn’t have those same good years together, I sometimes became envious.

Clare and I weren’t even able to enjoy much of our 60s together, yet here were our friends looking forward to enjoying their lives together for decades more.

Clare and I had been enjoying our early retirement so much … domestic and foreign travel experiences, visiting with children and grandchildren, enjoying our hobbies and volunteer activities.  And all of that started to come to a halt for us.

We had expected to enjoy our lives together for another 20 or 30 years, if not more.  Yet here I was watching those expectations blow up in my face.  So, yes, I was envious of some of our friends who were as deeply in love with each other as we were, but unlike us they were able to see a world of love and fun and enjoyment lasting for decades.

Clare’s decline had already reached the level where, at age 67 and in an assisted living facility, she was sometimes kissing other male residents goodnight thinking they were me.  She no longer remembered or understood that I was her husband.  Where was our future together?

I loved Clare for as long as there was breath in my body.  But I was envious of those whose futures were once the futures we had expected for ourselves.  And it hurt.

Envy … despite our absolutely wonderful life together for nearly 50 years … a true “fairy tale marriage” … I definitely started to envy those who had or expected to have those extra years together that I knew Clare and I would never have.  Envy can be a very difficult emotion to experience in that context … very difficult.

Personal Blog #39 … An AD Spouse Caregiver’s Emotions, Part 3 … Compassion and Contempt … 11/23/24

 

Compassion …. Sensitivity, warmth, concern, tenderness, kindness, love … just some of the many aspects of compassion.  Clare was the love of my life for half a century, and I had great compassion for Clare.  Sadly, that made watching her struggle with AD even more upsetting and difficult.

Everyone with AD is unlucky.  Everyone.  Having said that, however, I think that some people with AD, and their caregivers, are actually more unlucky than others.  I say that because, in my experience, some people with AD don’t even recognize that they have any problems.  They just decline.  That decline alone is extremely sad both for those with AD and their caregivers.

However, some people with AD are keenly aware of everything that is happening to them.  Everything.  And that awareness keeps increasing as they move from early to moderate stages, often causing additional stress and difficulties for spouse caregivers.

Spouse caregivers want their loved ones to retain their dignity and independence for as long as possible, but also know that at a certain point they must help their loved ones with daily ADLs. (Activities of Daily Living).  Loved ones who are keenly aware of their decline often reject that help because they think they can handle all their ADLs by themselves, resenting offers of assistance.

In my experience, those who are fully aware of what is happening both to their minds and their bodies have more difficulties dealing with AD.  Clare was aware of everything and, as her decline worsened to where I had to help her with ADLs, arguments often became common.  Clare didn’t think she needed any help, even when she did.

Another difficulty for those aware of their declines … throughout Clare’s early and moderate stages of AD, she would sometimes suddenly burst into tears.  Whenever I asked what was wrong, why was she crying, she would almost always say that she was crying because she couldn’t stand what was happening to her. 

She couldn’t stand how she was forgetting everything she once knew.  She couldn’t stand how things that were once so simple for her were now too difficult to do.

As Clare’s AD worsened from moderate to severe stages, those crying spells eventually disappeared.  By then, sadly, she had almost no memory of people, places, or events … and no memory of how to do many basic things. 

Did Clare still know what was happening to her?  I’ll never know for sure.

But even when Clare reached the point of being unable to recall basic facts such as her last name, my first name, etc. she was still able to recall the words to numerous songs!  We would sing some of her favorite songs together all the time.  I came to learn that numerous studies have demonstrated that often one’s music memory is among the last memories to fade away.

As Clare slowly faded away right before me, I loved her as much as possible right up to the end.  Although she had forgotten who I was, who “we” were, I wanted to hang on to as much of Clare as possible for as long as possible.

Compassion … one of my favorite emotions

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Contempt … I have contempt for our federal government.  Throughout Clare’s AD experience, our government knew that it should have been spending more money on AD research, along with money and services to provide assistance for AD caregivers.  Sadly, our government’s commitment was incredibly underwhelming.

When Clare was dealing with AD, Alzheimer’s was the 6^th leading cause of death in this country.  Due to undercounting, some researchers thought that it was really the 3^rd leading cause of death, right behind heart disease and cancer.  And yet, federal funding for AD research was nowhere at the level it should have been.  

AD was already costing Medicare and Medicaid more money than any other disease.  If for no other reason than to avoid bankrupting our health system, our federal government should have been spending much more money on AD research each year.

How can you explain how presidents can advocate for increased AD funding, congress can advocate for increased AD funding, yet that increased funding never materializes? 

Year after year, our government was spending more money on diseases for which we already had successful methods of prevention and treatments, and on diseases that do not lead to death.  How does this happen?  As a major cause of death in this country, wouldn’t it seem obvious that AD should receive major funding for research?

Is it because, despite Clare’s relatively young age at diagnosis (just before turning 63), AD mostly strikes the elderly in their 70s, 80s and 90s and the elderly do not provide as strong a lobbying presence in congress as younger people with other diseases?

Fortunately, in recent years there has been a sizeable increase in funding for AD research.  There have also been efforts in recent years to provide greater assistance for caregivers.  All good.  This must continue, but there is still so much we need to learn in order to prevent, treat, and eventually possibly cure AD.

There is a word to express how I feel about presidents and congress saying that we need to have more research into how to prevent and treat AD, but then do not match their words with dollars and provide the funding needed to do that.

There is a word to express my lack of respect for government officials whose actions do not match their words.

Contempt … yes, contempt is precisely the word that expresses how I feel.

 

Personal Blog #38 … An AD Spouse Caregiver’s Emotions, Part 2 … Apathy and Boredom … 10/26/24

Apathy … Before Clare’s AD, she had so many interests and was enthusiastic about so many different things.  She loved to read, play word games, do large jigsaw puzzles, sing with me while we played guitars, sing in her temple choir, play the piano, bowl with me in several weekly leagues, and the list went on and on.  Along with caring for her plants and garden, and so many volunteer activities, Clare was busily engaged each day throughout the week.

But as her AD started to worsen, Clare became indifferent about most things.  Apathy replaced her intense desires to experience old and new things.  Slowly, over time, Clare stopped engaging in any of her favorite activities.

Apathy is a common symptom of AD, but it often takes caregivers some time getting used to.  For example, Clare would tell me she wanted to do something, but then quickly lost interest and never do what she said she wanted to do.

As long as Clare’s apathy didn’t extend to me, however, I was okay.  She still wanted to be with me each day.  Unless I was taking her out, Clare preferred to spend virtually all of her time with me, usually cuddled up in my arms while watching TV.  Of course, most days I ended up watching TV by myself as Clare, invariably, fell asleep in my arms.

Until I placed Clare in an assisted living facility, she followed me around our house  anytime I left her alone, even if only for a minute or two.  She only cared about being with me all the time.  All of her other interests had disappeared.

But I was fine with that.  I only dreaded the day when Clare would no longer care if I were with her or not … that would be a very difficult day for me, but that day never came.  Right up until the end, Clare always wanted to be with me.  That made me happy, even though she no longer knew my name or that I was her husband.  I will never know who she thought I was.  But, still, it made me happy to make her happy.

Apathy … a feeling I never thought Clare would experience about anything.

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Boredom … Although I was happy that Clare still wanted to be with me, and I tried to maintain many interests, I found myself bored a lot.  I tried to continue bowling in 3 leagues, but sometimes I was too upset to go bowling after saying goodnight to Clare in her assisted living facility.

I left my house to work out at a gym several times a week, I left my house to go food shopping, and of course I left my house to visit with Clare.  But, increasingly, I had no desire to do anything.  I missed doing things with Clare.  There were weeks when I spent my entire days in bed except for when I’d go out to visit with Clare.

I was finding myself bored more and more even when with Clare … both at her facility and when taking her out for a few hours … primarily because Clare could no longer engage in any kind of meaningful conversation.  Clare couldn’t complete a sentence anymore and, when she did manage to say a few words, they often made no sense.

I was finding it harder and harder to figure out what Clare was trying to say to me on those rare occasions when she wanted to tell me something.  I was now doing all the talking when we were together, even though I knew she probably didn’t understand much, if anything, of what I was saying.

I told her about my day, about our children and grandchildren.  I told her about some of the things happening in our community, our state, our nation, and around the world.  But there was never any reaction from Clare to anything I said.   Sometimes I brought in picture albums to try to engage Clare.  But, again, no reaction.  No questions, no comments … nothing. 

As Clare’s AD worsened, so did her fatigue.  All Clare wanted to do was cuddle up in my arms and sleep.  Afternoon after afternoon, night after night, we sat together in the facility’s small TV lounge.  Within 5 to 10 minutes, Clare would be asleep in my arms and I would try to watch TV by myself. 

However, I was now so sleep-deprived that I, too, would often fall asleep while watching TV.  I had to set an alarm on my phone to wake me up in time to take Clare to the bathroom and bring her back to her dementia unit.

If someone had ever asked me before Clare’s AD if I had ever been bored when with Clare, I would have laughed out loud.  Bored with Clare?  How could I ever be bored with Clare?  We used to talk for hours and hours about anything and everything.

As long as we were with each other, usually holding hands or cuddling, we were having a good time!  We never needed anyone else’s company or needed to engage in any activity to enjoy our time together.  We just needed each other.

But now, Clare was “no longer Clare” anymore.   We were together, yet not together, at the same time.  I missed all those conversations we used to have about the ordinary little things in life, and about those major events and decisions.  I missed talking with my best friend and partner, the one person on this planet who completed me.

All of those conversations were now gone … forever.  I still loved cuddling her, kissing her, and holding her hands even when she was asleep in my arms.  And it was important to me that Clare felt at peace in my arms.  But I missed our conversations.  So much.  I missed so many things … and one of them was just talking with Clare.

But … those days were now long gone and never to return.

Boredom … I hate what AD did to Clare … to me … to us.

Personal Blog #37 … An AD Spouse Caregiver’s Emotions, Part 1 … Acceptance … 9/30/24

 I had 35 columns published in The Huffington Post (since renamed, HuffPost) in 2015-2016.  I discussed some of the emotions I was experiencing in 8 of those first 9 columns  while watching my wife, Clare, slowly dying due to her battle with Alzheimer’s disease (AD).  As Clare’s symptoms worsened, I went from being her loving husband to a distant memory in her mind.  Even when she no longer recognized our children, grandchildren, or friends, Clare still, somehow, recognized my face.  I honestly don’t know what she recalled about me, but she always smiled and looked happy whenever she saw me.

Clare spent most of her last 2 and a half years in an assisted living facility, except for 1 week in a hospital and 1 month in a psychiatric facility, and she lived her final 6 weeks in a nursing home.  Clare no longer knew my name, or that we were husband and wife. Clare referred to me simply as a “nice man” or ”nice lady,” often asking me to please help her find her husband.  Yet during that time and up until the last day of her life, during each visit Clare would smile and be so happy as soon as she saw my face.

I was feeling both married and widowed at the same time, and growing more depressed.  I knew that I had to do a better job of dealing with my emotions and feelings.  I did an internet search for words that described my feelings and I wrote some columns about a few of those emotions and feelings for The Huffington Post. 

Recently, while speaking with an AD caregiver having difficulties dealing with various emotions and feelings, I mentioned that I had experienced similar feelings.  My friend found our discussion helpful, and I thought that other caregivers might also find some comfort by reading about my own personal experiences dealing with difficult emotions and feelings as an AD spouse caregiver.

This is the first in a series of 10 Personal Blog columns I plan to write and post only on this site in the last week of each month through June, 2025.  This column expands upon my second column published in The Huffington Post in 2015 … the emotion/feeling of acceptance.  Future columns will discuss emotions and feelings I have never written about before in any forum.  For The Huffington Post, I wrote those 8 columns about some of my emotions in alphabetical order, and I plan to do the same for this series.  Hopefully, this series will be helpful to other AD caregivers who visit this site.

Acceptance … a month before turning 63, and more than 2 years after I first noticed symptoms of AD, comprehensive testing at an Alzheimer’s Disease Research Center in New York City led to my wife’s diagnosis of early onset AD.

Accepting that your wife has a fatal disease, one with no effective means of treatment or cure, is not easy.  But her diagnosis did not surprise me.  I accepted it.  In fact, I had expected that diagnosis months earlier, even though doctors were telling us that Clare’s symptoms were due to stress, anxiety, or depression.  Research I had been doing for 2 years made me feel certain that she was already in the early stages of AD

But my acceptance didn’t make it any easier to know that our lives would be changed forever.  Acceptance did not mean absence of pain.  Acceptance of her AD diagnosis hurt.  A lot.  And it kept on hurting.  Sadly, I had no way of knowing just how much more pain was to come after my acceptance of that AD diagnosis.

Pain came in waves, and just continued coming.  I had accepted that there is no way to effectively treat AD, and I had accepted that there is no cure.  I knew that after an AD diagnosis some people may only live for a year or two, some may live for 18-20 years, but the average time a person lived after an AD diagnosis was only 8 years.

Given Clare’s highly developed verbal skills, her fluency in several languages, and her young age, the geriatric psychiatrist who discussed the AD diagnosis with us said that we could reasonably hope for Clare to have 15 or more good years. I didn’t believe him.  I personally didn’t know of anyone who had even 10 good years after diagnosis.

This diagnosis became our new reality, and I had no other choice but to accept it.  But acceptance of my new reality did not mean that I had to like my new reality.  It did mean, however, that I had to learn to live with my new reality.  I had to learn how to get on with my own life, knowing that Clare would no longer be by my side during what we both had once hoped to be a lengthy retirement.

I knew that I had to accept that Clare and I would soon no longer be a “we” … those “we” days would soon be gone.  I knew that.  I knew that Clare would now have a future apart from me and I would soon have a future apart from Clare.  But knowing all of this didn’t make it any easier for me to move on.  Why was acceptance of my new reality so difficult to … accept?

A decade prior to Clare’s diagnosis, and shortly after her diagnosis, we had discussed what we wanted should severe health issues require either of us to ever need either 24/7 home health aides or placement in a facility.  In 2013, more than 6 years after I first observed Clare exhibiting AD symptoms, I placed Clare in an assisted living facility.

I was now living alone in “our” house, a house we had shared for 40 years. I still wanted to hold onto our past and wanted Clare to be part of a wonderful future … together … with me.  But that was no longer possible.  I knew that.  I had accepted that.  Painfully.

I wasn’t in denial.  I really wasn’t.  But I was finding it so very hard to accept our new lives.  I didn’t want to “let go” of Clare.  I was finding it so hard to accept my new life as an “I” instead of as part of a “we.”  There were lots of tears, lots of lying in bed at all hours of the day, lots of inertia.  And lots of pain.

Clare only lived for 7 years after her diagnosis.  She died in her sleep just one month before what would have been her 69^th birthday … 2 months before what would have been our 49^th anniversary.  Our “we” days were now gone forever. 

Acceptance … just the first of many emotions and feelings I was now experiencing and struggling with on a daily basis.

Top 5 Tips Physicians Can Share with Caregivers of People with Alzheimer Disease

 

THE NEUROLOGY HUB

 

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Alzheimer Disease & Dementia > Caregiver Essentials

Top 5 Tips Physicians Can Share with Caregivers of People with Alzheimer Disease

Allan S. Vann, EdD

 

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When a physician sees a patient with a diagnosis of Alzheimer disease (AD), they may also interact with the patient’s caregiver. Caregivers are an essential part of a person with AD’s treatment journey, and it is therefore critical to equip them with optimal care tools and strategies, and to help caregivers develop care plans early after diagnosis. In this article, I have drawn upon my own 10 years of experience as a spouse caregiver for my late wife, who was diagnosed with early onset AD, to provide physicians with my top 5 topics to bring up with caregivers of people with AD.

1. Make sure patients know where they are in their dementia journey and suggest they make plans accordingly.

When a physician makes a diagnosis of AD, it is essential that a patient and their caregiver understand exactly what that means for their daily life. You should clarify that, while AD progresses differently for each patient, one can never be sure how long it will take for significant impacts on normal activities to occur. Physicians do not need to “unduly frighten” their patients and caregivers, but they should be honest about the uncertainty regarding the timeline of transitions.

The unpredictability of cognitive decline became apparent when my wife and I were making travel plans. At my first AD spouse support group meeting, I mentioned that my late wife and I loved to travel and had already placed a deposit on an international trip we had planned to take in 12 months. A wise woman whose husband was in the moderate stage of AD whispered to me on the way out, “Allan, don’t wait 12 months to take that trip. Your wife may not be able to travel a year from now.” That night, I asked my wife where she would like to go if we could only take one more trip. She told me and then fell asleep, and then I booked that trip. We traveled 3 months later to another destination and that turned out to be our last major trip. My wife’s cognitive skills declined so quickly that the following year we were unable to take the international trip we had planned.

2. Broach the topic of long-term planning and long-term care options with your patients as early as possible.

There are numerous questions that you can ask caregivers of patients with AD:

What will you do if you can no longer care for your loved one by yourself? Can you rely on close family members or friends for support? Does your loved one prefer to stay at home with companions or health aides, or does your loved one prefer to be in a residential facility? Which do you prefer?

If not previously discussed, it is best to have these conversations as early as possible, ideally before the caregiver’s loved one has experienced significant cognitive decline. Caregivers need sufficient time to assess their options, visit potential care facilities, and to consider employing the help of home health aide providers. It can be especially helpful to include the person with AD in long-term planning conversations. The earlier that caregivers consider these options, the more prepared they will be at the different stages of transition that their loved one experiences. This is particularly important for the wide range of policies to which each care provider adheres, such as whether a facility uses a waitlist for admission, whether meals are provided, or whether a home health aide provider is available 24/7. You can refer caregivers to helpful information available on their state’s Department of Health website.

As each of these long-term care options carry different price tags, another aspect of long-term planning is finances. If possible, recommend that your patients and their caregivers meet with an eldercare attorney and financial advisor.

When my late wife and I retired, we discussed the possibility of long-term health care and decided that we did not want such care to take place in our home. Nine years later, my wife was in the early stages of AD, and we started visiting various facilities. It gave me some comfort to know that when I did eventually place my wife in an assisted living facility, it was the one where she had felt most comfortable during our site visits.

3. Discuss driving safety with patients and their caregivers.

As patients with AD experience cognitive and functional decline, they may also lose the ability to drive safely. Unfortunately, it is not possible for a physician to predict when exactly this may occur. A report from the American Academy of Neurology (AAN) notes the importance of physicians talking with patients and caregivers about the risk of driving once there is a diagnosis of AD or dementia.¹ Friends and family members are often the first to notice any changes in behavior, including driving habits, so physicians should discuss this topic during every patient visit and document any changes.

At some point, caregivers may need to take the keys away from their loved one with AD. This is often an extremely difficult and emotionally straining decision, but it is a decision that must be made in most cases. My advice is to encourage caregivers to take their loved one’s car keys away early, before their cognitive ability declines to the point where they get into an accident and cause injury or property damage, or become lost while driving and forget how to return home and call for help. These are frightening scenarios, but very real possibilities.

4. Suggest that caregivers explore caregiver support groups.

Earlier, I mentioned how a fellow member of an AD spouse support group meeting helped me to realize the importance of scheduling an earlier trip with my late wife, rather than wait 12 months for the international trip we had previously planned. Like me, many caregivers can benefit from participating in this type of caregiver support group. These groups provide an environment where caregivers in similar situations can share helpful tips, recommendations, strategies, or stories about common experiences and challenges. Additionally, such groups can provide emotional support and tactics for time management, activities, and advanced care planning.

It is often beneficial for caregivers to identify a group that matches their specific experience. For example, the group I mentioned was for partners or spouses of people living with AD. Other groups might be catered to children caring for their parents or grandparents.

As with everything, it is helpful for physicians to encourage caregivers to join support groups early in their care journey, as soon as possible after their loved one is diagnosed with AD. Let caregivers know that participating in these groups requires a certain level of commitment, but that they can provide significant benefits including valuable social interaction that can help the overall physical and mental health of caregivers.

5. Consider recommending adult social day care and other resources.

Social day care programs can be a relatively low-cost, win-win option for loved ones in early-to-moderate stages of AD and their caregivers. These programs provide opportunities for those with AD to engage socially with others in similar circumstances and to participate in activities including art, singing, dancing, and games. Caring for a loved one 24/7 can be extremely stressful, so these social day care programs can provide several hours of respite for caregivers. Physicians can assist caregivers by making them aware that these types of programs exist. Consider becoming knowledgeable about day care options in your geographic area or referring caregivers to local AD organizations, municipal senior citizen services, adult homes for seniors, and assisted living facilities that provide social day care services.

Final Thoughts for Physicians

The caregivers of each of your patients have one thing in common: We are each paddling our boats as hard as we can trying to stay afloat to support our loved ones. We may be paddling different boats, in different waters, and at different speeds, but we are all dealing with a similar situation. We are all trying to keep our heads above water. Your patients and their caregivers are dealing with this situation for the first time, but as a physician, you are in a position to provide guidance and suggestions that can drastically improve the quality of life not only for your patients, but also for their caregivers. Any advice you can offer, however small, may make a big difference in the lives of your patients and their caregivers.

1.     Iverson DJ, Gronseth GS, Classen S, Dubinsky RM, Rizzo M. Practice parameter update: evaluation and management of driving risk in dementia. Neurology. 2010;74(16):1316-1324. doi: 10.1212/WNL.0b013e3181da3b0f

Published online only on July 23, 2024 on The Neurology Hub website. The Neurology Hub is a site “designed for health care professionals to learn, collaborate, and share content and ideas in the field of neurology” and is sponsored by the journal, Practical Neurology.

This article can be accessed at:  https://theneurologyhub.com/article/top-5-tips-physicians-can-share-with-caregivers-of-people-with-alzheimer-disease

Personal Blog #36 … FDA Approves Donanemab (Kisunla) for Early Stages of Alzheimer’s Disease … 7/28/24

 A few weeks ago, the Food and Drug Administration (FDA) approved a new medication to treat people diagnosed with mild cognitive impairment (MCI) or in early stages of Alzheimer’s disease (AD).  The medication, donanemab, clears amyloid protein plaques from the brain and will be sold by Eli Lilly under the brand name, Kisunla. ¹

Readers of my Personal Blog (PB) columns may recall my previous PB about donanemab.  In PB#31, posted on this site on 5/8/23, I noted that whereas the FDA wanted more data before approving of this new medication, I would not have wanted my late wife to have taken donanemab had it been available to her in early stages of AD. 

My primary reasons noted in PB#31 were that the data indicated just a modest, if even noticeable, slowing of AD symptoms for a few months at best for some patients taking this medication … but there was also a serious risk of negative side effects.  I wrote that, in my opinion, the risk of those negative side effects … about 25% of patients taking donanemab suffered brain bleeds … far outweighed any possible benefits.  After receiving more clinical trial results the FDA has now given donanemab its approval, but my opinions of this new medication have not changed.

On July 2, 2024, Pam Belluck, health and science reporter for The New York Times, wrote in her article, “New Drug Approved for Early Alzheimer’s,” that this new amyloid protein clearing drug (costing $32,000 for one year of therapy) is “the latest in a novel class of treatments that has been greeted with hope, disappointment, and skepticism.” ¹

Belluck’s article quotes Dr. Michael Greicius, a Stanford University School of Medicine neurologist, who said he would not prescribe this new drug for his patients.  Dr. Greicius stated that if this medication was effective, “the data should show that individual patients who had more amyloid removed from their brains experienced slower rates of cognitive decline.”  ¹   However, Greicius said that whereas the Lilly data demonstrated successful removal of amyloid plaque from the brain, “there is no correlation in any of their studies between the removal of amyloid plaques and the clinical responses of individual patients.”  ¹

Lilly data used an 18-point cognitive scale to compare results of the group receiving donanemab and a placebo.  Their data showed that patients receiving donanemab had a seven-tenths of a point difference compared to those receiving a placebo. ¹   As I have written in several PBs and published articles, there is a vast difference between statistically significant differences demonstrated by testing in clinical trials and real-world performance.  In my opinion, the possible “reward” of minor slowing of decline for a period of several months, when weighed against a 25% risk of brain swelling or bleeding, is just not a good enough “risk/reward” ratio.

According to the FDA, a “black box warning” will appear on this new medication that is to be taken intravenously over about 30 minutes once a month, and readers of this blog should take note:

“The prescribing information includes a boxed warning for amyloid-related imaging abnormalities (ARIA). ARIA most commonly presents as temporary swelling in areas of the brain that usually resolves over time and may be accompanied by small spots of bleeding in or on the surface of the brain.  ARIA usually does not have symptoms, although serious and life-threatening events rarely can occur.

Patients who are ApoE ε4 homozygotes have a higher incidence of ARIA, including symptomatic and serious ARIA, compared to heterozygotes and noncarriers. Testing for ApoE ε4 status should be performed prior to beginning treatment to inform the risk of developing ARIA.

There is risk of infusion-related reactions, with symptoms such as flu-like symptoms, nausea, vomiting and changes in blood pressure, and hypersensitivity reactions, including anaphylaxis (severe, life-threatening allergic reaction) and angioedema (swelling).

The most common side effects of Kisunla were ARIA and headache.”  ²

 

1   New drug Approved for Early Alzheimer’s.  The New York Times, July 2, 2024.  Access at:  https://www.nytimes.com/2024/07/02/health/alzheimers-treatment-kisunla-donanemab.html

2.  FDA approves treatment for adults with alzheimer’s disease … FDA, U.S. Food & Drug Administration.  Access at:  https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-adults-alzheimers-disease

A Former AD Care Partner’s Perspective on Leqembi

 

Social workers facilitating support groups for Alzheimer’s disease (AD) care partners or for people in early stages of AD should expect many questions in the coming months and years about some of the newer AD medications that are receiving, or about to receive, FDA approval. How should social workers respond to these questions that may be asked by AD patients and care partners? Aside from the obvious response that such questions should be directed to the patients’ doctors, here’s the view of one former AD care partner. On July 6, 2023, the FDA gave full approval for Japanese drugmaker Eisai and its American partner Biogen to market its latest medication, lecanemab (to be known as Leqembi) for those with mild AD. Announcing the approval, Teresa Buracchio, acting director of the Office of Neuroscience in the FDA's Center for Drug Evaluation and Research, says, “Today’s action is the first verification that a drug targeting the underlying disease process of Alzheimer’s disease has shown clinical benefit in this devastating disease. This confirmatory study verified that it is a safe and effective treatment for patients with Alzheimer’s disease.”1 That same day, The New York Times noted that the FDA acknowledged that Leqembi clinical trial results indicated that those taking the new medication showed a significant difference on an 18-point scale measuring cognitive functioning and memory, and that Leqembi “slowed memory and cognitive decline by about five months for those receiving the medication as opposed to those receiving the placebo.”2 However, as a doctor noted in that same article, “The benefits of slowing are subtle. You’re not going to experience the perception of changes in your cognition or function in the same amount of time.”2 In that same New York Times article, the author noted that Leqembi will carry a” black-box warning” about possible side effects such as brain swelling and bleeding, with a notation that “additional caution should be exercised” when considering whether to give blood thinners to Leqembi patients. Elsewhere in that same article it’s noted that “Concerns about safety have been stoked by reports of deaths of three clinical trial participants who experienced brain swelling and brain bleeding, two of whom were being treated with blood thinners. Eisai has said it’s unclear if Leqembi contributed to their deaths because the patients had complex medical issues.” According to an NBC news release online on Leqembi that same day, “About 12.6 % of patients who got Leqembi in the trial developed brain swelling, compared with 1.7% of those in the placebo group. About 17% of the Leqembi group experienced brain bleeds, compared with 9% in the placebo group.”3 I don’t think my late wife would have considered taking such a medication. Why? Three reasons: First, just the procedure for having to get dressed and get into the car to go to and from a doctor’s office for IV injections every two weeks for a year would have been a very stressful experience. And there would be additional doctor visits for various brain and blood scans while receiving the medication. In addition, my wife always felt pain with injections and bled readily, with her skin turning all pretty colors whenever receiving a needle for any reason, possibly due to all the heavy-duty heart medications she was taking each day as well as 325 mg of daily aspirin. A second reason would be the side effects. AD is serious enough as it is—a death sentence with no cure and the 100% certitude of worsening conditions. Gaining a few additional months of time to continue leading a more “normal” life before cognitive and memory issues worsen even more would be wonderful, but much too heavy a price if those side effects occurred. Dealing with AD and heart disease was enough of a double whammy for my wife. Possibly compounding that with brain swelling, bleeding, headaches, and other effects of this medication would have made her situation even worse. The final reason is the “real world effectiveness” of this new medication. Study participants taking the medication showed a gain of less than one half of one point on testing—a statistically significant outcome, perhaps, but I question how much of a clinical difference that really would have made in my wife’s life or in mine. By the time my wife was in early stages of AD, our lives had already changed dramatically. A few more months of slower decline would have been welcome but would probably not have changed much about our daily lives. Especially when one considers that the trade-off to perhaps gaining a few months of slower decline might have led to losing the quality of life we still had. Slowing decline doesn’t mean ending it, and we may not have even noticed that slowing. The added stress of two more doctor visits each month, the pain and after-effects of IV needles, and possible additional pain or hospitalization due to severe side effects of this new medication would have easily lessened whatever quality of life we still had. Would I have loved my wife to have declined at a slower rate for a few more months in those early stages? Of course. Would I have loved to have taken more trips with her? Absolutely. But worrying about the possibility of her having a serious brain hemorrhage or other serious side effect while traveling away from home would have worried me too much to have taken that chance. In fact, I would have been worried every single day, whether at home or not, had she been taking this new medication. I haven’t even mentioned another real-world effect of this new medication—the demands placed upon the AD patient’s care partner. Even in early stages, some AD patients may need assistance in dressing and with mobility and may angrily object to going out in bad weather or going out at a certain time of day. Helping people with AD can strain even the best of relationships. In addition, many care partners are still working when their loved ones are in early stages, and time demands of taking loved ones to two office visits each month for IV injections, along with additional visits for brain scans and other required testing to remain in this program, could be an additional burden. And, of course, there’s the financial burden this would be for many people with AD and their care partners. Even with expected 80% reimbursement by Medicare, out-of-pocket costs would still be high for both the medication and the additional office visits and scans. “Patients with traditional Medicare will pay 20% of the bill for Leqembi, according to the federal Centers for Medicare and Medicaid Services. That means these patients could see an annual bill of more than $5,000.”4 As a former 24/7 AD spouse caregiver, I am often skeptical of reports of “statistically significant” test results because I find that, too often, such results do not translate into meaningful observable differences in the real world. There is a big difference between “statistically significant” and “clinically different.” I often think of “statistically significant” AD test results in this way. Suppose one has 2,000 equally healthy and robust house plants, each producing 100 healthy leaves, with each plant expected to live for one full year before losing all of its healthy leaves. Then, suppose a clinical trial is conducted to determine if something added to the water might produce healthier plants. During the clinical trial to test whether or not a chemical added to “enrich” the water is better than just plain water for these plants, 1,000 plants receive only regular water and 1,000 plants receive only “enriched” water for an entire year. Then suppose that after one year, the plants receiving regular water have 99 dead leaves, while the plants receiving enriched water “only” have 98 dead leaves. If the authors of that hypothetical study then concluded that the difference in dead leaves is statistically significant by some sort of testing metric, results would still be totally meaningless to me. The plant with “only” 98 dead leaves would not look appreciably healthier to me than the plant with 99 dead leaves. Statistically significant differences? Maybe. Clinically significant differences? Not to me. The bottom line, to me, is one would have two dead plants. I am hoping for the day when a new AD medication will prove clinically effective in the real world, which to me would lead to many, many months or years before symptoms develop, worsen, or disappear with no serious potential side effects. I don’t see that happening with Leqembi. I won’t get too excited about Leqembi or other new medications with similar “statistically significant” results that also carry great risks of dangerous side effects. Not just yet. I have been disappointed too many times. I have seen too many dead plants. Social workers must always be careful not to involve themselves in discussions about advantages and/or disadvantages of any medications, referring all such questions to medical personnel. As someone who has facilitated support groups for AD care partners in the past, I was often asked medical questions by participants in my group. So social workers must accept that they may be asked by some care partners, if not by people with AD, questions such as “I know you cannot give me medical advice, but as someone I trust, what would you do if it were your mother/father/sister/brother/spouse? At least you will now have this former AD care partner’s perspective! — Allan S. Vann is a retired public school principal and former Alzheimer’s disease (AD) spouse care partner. To date he’s had more than 100 articles about AD published in peer reviewed medical journals, caregiver magazines, on AD organizational websites, and in major newspapers. Although his wife died of AD in 2016, he remains an active AD advocate for change, continues writing for publication, and continues to serve on advisory panels to help educate professionals working with AD patients and their care partners.   References 1. FDA converts novel Alzheimer’s disease treatment to traditional approval. U.S. Food & Drug Administration website. https://www.fda.gov/news-events/press-announcements/fda-converts-novel-alzheimers-disease-treatment-traditional-approval. Published July 6, 2023. 2. Belluck P. New federal decisions make Alzheimer’s drug Leqembi widely accessible. The New York Times. July 6, 2023. https://www.nytimes.com/2023/07/06/health/alzheimers-leqembi-medicare.html 3. Lovelace B Jr. FDA grants full approval to new Alzheimer's drug meant to slow disease. NBC News website. https://www.nbcnews.com/health/health-news/leqembi-alzheimers-drug-fda-approval-eisai-biogen-rcna92377. Updated July 6, 2023 4. Kimball S. Medicare will pay for Alzheimer’s drug Leqembi. What patients and doctors should know. CNBC website. https://www.cnbc.com/2023/07/08/leqembi-and-medicare-what-patients-and-doctors-should-know.html. Published July 8, 2023.     Published as a Web Exclusive for Social Work Today, online only,  on 5/8/24 at https://www.socialworktoday.com/archive/exc_050724.shtml