Personal Blog #46 … Time to Say Goodbye … 6/28/25

This will be my last Personal Blog column.  Were Clare to have lived, we would have celebrated our 58^th wedding anniversary this month.  Unfortunately, we were 2 months shy of our 48^th when Clare died in April, 2016.

I’ve written a lot about AD.  I’ve had more than 100 articles published in medical journals, caregiver magazines, and in major newspapers.  I’ve also written and posted a lot of Personal Blog columns on this site.

Through my writing I had hoped to accomplish several goals …

-       increase public awareness of AD

-       stimulate greater federal funding for AD research

-       improve the ways doctors diagnose and treat people with AD and their caregivers

-       increase awareness of AD caregiver issues among health care professionals and leaders of assisted living and nursing home facilities

-       improve the lives of AD caregivers.

At this point in my life, I don’t think my writing can contribute more to further those goals.  In recent years I have remained active in efforts to improve the lives of those with AD and their caregivers by serving on national grant projects and pharmaceutical caregiver panels hoping to improve treatment of AD patients in hospital emergency rooms and to bring more effective treatments to market.  I have made presentations to health care professionals, medical students, and other AD caregivers.  I will remain available to offer suggestions and help to anyone who contacts me, but I think that my days of writing are now behind me. 

Some final words …

For health care professionals, please urge your AD patients and their caregivers to join local support groups!

For those with AD and for AD caregivers, find a good support group. If you attend one and find it lacking, don’t give up … try another group.  And try to find a “homogeneous” group … a group of those in a situation similar to the one you are in.

I learned so much about being a better caregiver in my support group.  And I leaned on members of that group for so much emotional support.  Keep on fighting the good fight.  Hopefully, in time, there will be effective medications or treatments to improve the lives of those with AD and their caregivers.  Hopefully, in time, there will be effective preventative measures … or a cure.

I will maintain this website for as long as possible so anyone can come to read copies of my published articles and all of my Personal Blogs.  And I will continue to respond to emails sent to me at acvann@optonline.net. 

Personal Blog #45 … An AD Spouse Caregiver’s Emotions, Part 9 … Regret and Suffering … 6/4/25

 

Regret … I have many regrets as a result of Clare’s Alzheimer’s disease (AD) diagnosis.  Obviously, first and foremost, I regret how much Clare suffered during those years.

But I also regret that there was … and still is … no effective way to prevent or treat AD, let alone cure AD.

And I regret that Clare started suffering from this horrible disease at such a young age.

I wish we would have traveled more and done other things together while doctors were misdiagnosing her with stress, anxiety, or depression for several years before she received an AD diagnosis.

I knew that AD could progress very quickly from diagnosis through end stages.  But I never expected Clare to proceed through those stages as fast as she did.

I regret that our fairy tale marriage came to an end so quickly.

Regret … sadly, I regret so many things too numerous to mention.  I guess that I regret everything about her AD.

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Suffering … Anyone with AD suffers … a lot … but an AD caregiver also suffers … a lot.  Caregivers watching their loved ones slowly “disappear” before their eyes suffer a great deal.

Unlike those with AD who forget those they once loved, their caregivers do not forget … caregivers remember what their lives were like only too well.  So many times, with Clare asleep and cuddled in my arms, I would just start crying.  Even when she no longer knew I was her husband.

Watching her decline was so very tough.

Some have referred to Alzheimer’s disease as thee “long goodbye” … but it is also a very short goodbye because it is often common for someone with AD to linger on with loved ones without knowing who their loved ones are … or were.

Being married and widowed at the same time is very stressful.

Suffering … one definition of suffering is pain.  I was in daily pain while watching Clare slip away from me.  All people watching their loved ones dying of AD are suffering and dealing with daily pain.

 

Personal Blog #44 … An AD Spouse Caregiver’s Emotions, Part 8 … Hope and Pride … 4/24/25

Hope … I have never been that optimistic person who always sees the glass as half full.  However, I have always looked forward to a bright future while hoping for the best.   And, with most diseases, there is at least some hope for the future.

But not with Alzheimer’s disease (AD). With AD, there is no hope.

With AD, there is no hope of remission or recovery.  An AD diagnosis is much like a death sentence verdict in a court … a death sentence with absolutely no chance of commutation or pardon.

AD has been listed by our CDC, Centers for Disease Control, as the 6^th leading cause of death in this country.  But studies supported by the National Institutes of Health (NIH) have indicated that AD may actually be the 3^rd leading cause of death, right behind heart disease and cancer.  Why?

Because when someone with AD dies of respiratory failure, pneumonia, heart issues or other immediate causes, too often AD is not listed on death certificates as a significant factor contributing to that person’s death.  Both immediate causes of death and other significant factors contributing to death that are noted on death certificates comprise the data used by the CDC when issuing annual rankings of disease mortality.

When a person with AD chokes to death while eating, it may be because AD led to that person’s inability to swallow properly.  Or a death certificate may list falling as the cause of death for a person with AD, even if it was AD that directly led to that person’s loss of balance.

When Clare died and I received copies of her death certificate, I was shocked to see no mention of AD as either a primary or contributing cause of her death.  When I confronted the doctor who prepared the certificate, he said to me there was no way to prove AD contributed to her death.  So … another death due in part to AD that will never show up in any CDC statistics, despite the reality that were it not for AD my wife would have been eating properly, exercising properly, etc. and would not have been in such poor physical condition when she died.

Many deaths due to AD go unreported.  And that is a shame since federal research funding is often based upon mortality statistics.

Hope … when people are diagnosed with AD, they and their loved ones cannot have any real hope.  When battling a terminal disease with no effective treatment, let alone a cure, there is no hope.  No hope whatsoever.  No reasons for optimism.  Not when the diagnosis is Alzheimer’s.

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Pride … I was proud to have enjoyed a “fairy tale” marriage with an extraordinary woman for almost 50 years.  I was proud of how Clare handled her AD, trying to remain independent for as long as she could.

Unfortunately, Clare’s pride sometimes led to heated arguments as her AD worsened.  She did not always appreciate my efforts to help her as her ability to handle her ADLs (Activities of Daily Living) declined sharply.  Bathing, toileting, dressing, taking daily medications, etc. … she resisted help as long as she could, but many areas of her life were now impossible for her to handle properly by herself.

We had never argued like this in our marriage.  This daily stress was new to us.

Eventually, of course, Clare accepted my help … she had no other choice.  She just could not do simple everyday tasks anymore on her own.  Once at that point, she didn’t let her pride stand in the way. But it was not easy for her.

When Clare entered the lockdown dementia unit of her assisted living facility, she was 67 years old … and 10 years younger than the next youngest person in her unit.  For the next 2+ years that she was in that unit, and when placed in a psychiatric hospital for several weeks when the assisted living facility could no longer handle her behavioral issues … and then at the end when in a nursing home … Clare remained the youngest one in her various facility units.

Fading more and more quickly, confused all the time, Clare became only a semblance of the woman I had been with for so many years.  Her worsening condition was so incredibly painful for me to observe each day.  And if so painful for me, how painful must it have been for her?

During her last months in the assisted living facility, she had fallen several times, had two seizures, had been hospitalized a few times, lost a lot of weight, gained a lot of weight … it was so painful.  Her uneven gait, along with her falls, and her lack of physical strength, had ended her days of walking and placed her in a wheelchair.

But Clare remained very proud … and I was so proud of her.

Pride… I was always so proud of Clare … as a person, as my wife, as the mother of our children … right up to the end of her life.  AD had robbed my wife of her future years of good health and happiness … and AD had robbed us of a bright future together.  But I remained so very proud of her.

 

 

Personal Blog #43 … An AD Spouse Caregiver’s Emotions, Part 7 … Happiness and Hatred … 3/26/25

Happiness … For 2-3 years before diagnosis, it was already obvious to me …  even if not to her doctors … that Clare was probably in the early stages of AD.  I had become her caregiver.

For 4+ years after her diagnosis, I was Clare’s sole 24/7 caregiver and we were able to enjoy almost all of our time together.  As Clare’s condition started to worsen significantly, however, that enjoyment started to diminish.  But we were still living together at home and we were so happy just being with each other, talking about almost anything, holding hands, cuddling, hugging, kissing … just being together.  

Clare had always been much more technologically knowledgeable than I was.  But as her AD progressed at home, there would be 5, then 10, then 15 and more post-it notes on her computer as she struggled to remember how to do things.  As her AD slowly worsened, however, she couldn’t remember which post-it note to look at for help, or what those notes meant when she found them.

And then came the time when Clare could not remember how to use her computer anymore … or remember how to use the phone, TV remote, or any other device.

Once I was unable to care properly for Clare at home, as per her wishes, I placed Clare in an assisted living facility.  For the next year or two, Clare was enjoying most of her new daily activities and I visited her every day.  She made some friends, and I was happy knowing that my continued daily presence in her life, albeit only for several hours each day, continued to make her happy.  And, of course, she still brought me so much daily happiness during each visit.

Once or twice a week I’d take Clare out to a restaurant, although we were limited to places with unisex restrooms so I could accompany her in the bathroom.  I also took her to visit with friends once a week, to see musicals at local playhouses, and to go to the beach and cuddle on a bench while looking out at the water.

But I started experiencing more and more days when happiness was elusive.  AD has a way of doing that … of robbing caregivers of happiness.

My years of intense daily happiness were now behind me.  As Clare’s AD symptoms worsened more and more, my intense happiness resided only in my memories.  Intense happiness was no longer part of my daily reality.  To say I missed Clare as she used to be … to say I wanted our previous life back … would be such a ridiculous understatement.

But I knew those days were now gone forever and no longer part of my reality.  I was losing Clare, each day, little by little.  “Our” life together had now become her life and my life apart from each other.  The two of us would never again enjoy a life together as it used to be.

Alzheimer’s saw to that.  Alzheimer’s had already ended most of our daily happiness … forever.

Happiness … an emotion that, as Clare sank further and further down that seemingly never-ending black hole, was not experienced very frequently.

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Hatred … Hatred is such a harsh word.  Extreme or intense dislike or ill will is such a very harsh emotion.

Everyone knows what people mean when they say they hate someone or something.  There is no room for misinterpretation when someone uses the word, “hate.”  One should only use that word, “hate,” when one despises someone or something to an incredible degree.

I hate Alzheimer’s.

Alzheimer’s has absolutely no redeeming value.

Alzheimer’s is a disease that causes great pain for the person who has it, and great pain for those who love and care for that person. 

I hated what was happening to Clare.

I could not even imagine how painful AD was for Clare each day of her final months.  How painful it must have been for her to accept that her memories were completely disappearing.  How hard it must have been for her to accept her inability to talk or walk or eat or do any simple tasks.

It was so painful for me to see her working so hard to struggle to try to remember what she wanted to say to me about something that had happened only moments earlier.  More and more often, those words just no longer came to her.  Often, Clare said no words during a visit.

Everyone caring for a loved one with AD already knows how horrible it is to watch this complete breakdown of cognitive skills.  And if so painful for me to watch, how much more painful it must have been for Clare to live through.

Hatred … a harsh word like “hate” should only be used when one is extremely upset with someone or something.  I hate Alzheimer’s … I hate everything about it.

 

 

Personal Blog #42 … An AD Spouse Caregiver’s Emotions, Part 6 … Fear and Gratitude … 2/26/25

 

Fear … When Clare started sliding down further and further down that “black hole,” I started to worry about what my life would be like once she no longer knew who I was. And I was afraid of what my life would be like after Clare would no longer be in this world with me.  I started missing her more and more as she slowly but surely started slipping through my fingers.

How would I feel when Clare would no longer know that I was her husband?  How would I feel when I could no longer be with her … to talk to her, to hold her hands, to hug her, to kiss her … even when she didn’t know who I was?  How would I feel when I would be totally alone … no longer part of our “we” in even the slightest way?

I didn’t want that day to ever come … I dreaded that day.  Clare was my world.  But that day was surely coming … and much, much sooner than I had foreseen.

Preparing for the death of your loved one, sadly, is the only certain thing about AD … the only major disease with no effective treatment and with zero survivors.  Some with AD may live for only a year or two after diagnosis.  Some may live for another decade or two.  But … the reality is that death is the outcome once an AD diagnosis is made.

I also started worrying more about what AD would do to Clare once she reached the bottom of that black hole.  She was already so weak.  She was already unable to say more than a few words during each of our visits together. 

I could not even imagine what she must have been feeling or thinking after she lost her ability to communicate, walk, feed herself, or control her bodily functions.  Now that she was having to deal more and more with all of the body ravages that come with the end stages of AD, what could Clare have possibly been thinking?

As I began to worry more about what AD would do to me as I watched her slowly die, knowing I was totally helpless to help her as she slipped further and further away, fears about what my own life would be like after her death increased dramatically.

I began to fear that day when I would have to go from being married, albeit also already feeling very much widowed, to actually being completely widowed … without having Clare in my life at all in any way, shape, or form.  I dreaded that day. 

Fear … The further down that black hole she went, the more I came to fear that day when I would no longer be able to feel part of a “we” anymore.  And that is when I, too, started going down a black hole of my own.

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Gratitude … I am grateful for many things in my life.  Clare and I had 42 years of a wonderful marriage before her Alzheimer’s diagnosis, years filled with tremendous joy and happiness.  We watched our children grow up, marry, and have their own children.  We had so much fun and enjoyment. I am grateful for all of this.

I am also grateful for the careers we both had, providing much enjoyment and happiness for so many years.  And when we decided to retire, we traveled widely and could not have asked for more.  We loved our “new life” together as young retirees.

Even after Clare’s early onset AD diagnosis, we still enjoyed much happiness together.  And even after I had to place Clare in an assisted living facility, I was grateful for each and every moment of happiness we enjoyed together during my daily visits.

I remember wondering if we would ever get to celebrate our 50^th anniversary, our “golden” anniversary.  But as she began descending deeper and faster into that black hole, I doubted whether Clare would still be alive by then.  And, I wondered, if she did make it to our 50th, would she know who I was?

Clare didn’t make it to our golden anniversary.  She passed away in her sleep 14 months before that date. 

One learns quickly when caring for a loved one with AD that one cannot be so bold as to predict what is going to happen 3 years in advance.  Trying to predict how one with AD will be in just a few months in advance is difficult to predict, let alone 3 years.  Alzheimer’s robs you not only of your present, but also robs you of your future.

Gratitude … an emotion that only goes so far.

Personal Blog #41 … An AD Spouse Caregiver’s Emotions, Part 5 … Euphoria, Excitement, and Exhaustion … 1/26/25

Euphoria …. Euphoria is often described as “a state of intense excitement or happiness,” differing from ecstasy in that euphoric feelings are sometimes exaggerated or irrational.

Clare and I experienced euphoria many times, but none after her AD decline rapidly worsened.  Fortunately, however, even during her steep decline … I often referred to that period as her spiral descent into a never-ending, bottomless back hole … we were still able to experience occasional moments of happiness together.  When we kissed, when we held hands, when we cuddled, when we sang songs together, when we went out to eat by ourselves or with our closest friends … until her final days, we were still able to experience brief moments of genuine happiness.

Each of those moments of happiness took on more meaning as they became more and more infrequent.  Each experience was very special to me.

But euphoric?  Intense excitement or happiness?  No … those euphoric experiences were now clearly in our past, just as those experiences of ecstasy.

It’s very hard to feel euphoric about anything when one’s spouse does not remember who you are, or that you are husband and wife.  Or when your spouse no longer recognizes your children and grandchildren.  Or when you have to help your spouse with the most basic tasks of daily living, such as personal hygiene.  Or when your spouse is unable to have a conversation, or is having difficulty swallowing food, or experiencing all of those behaviors that characterize end stages of AD … it’s just very hard.

Euphoria … an emotion I no longer experienced with Clare once her AD worsened severely as she descended into that bottomless black hole.

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Excitement …  when Clare “was Clare,” I got excited about so many things with her. Our frequent mini-trips to visit with family and friends, our longer trips to explore places all around the world, were incredibly exciting and wonderful experiences.

I was excited each time we’d take the train into the city to see a Broadway play or visit a museum, often following a delicious lunch in one of the many ethnic restaurants in the city, either just by ourselves or with family or friends.

It was exciting to be retired at such a young age (mid 50s) and able to sleep late whenever we wanted to do so, or have a leisurely breakfast in our kitchen, or go out to eat for breakfast or lunch on a weekday!

And it was exciting to just play a leisurely board game or card game at our kitchen table while drinking coffee on a cold and snowy winter weekday, knowing we didn’t have to leave our house if we didn’t want to do so.  We were excited to simply enjoy whatever we wanted to do … or not do … on any given day in retirement!

It was exciting to know that virtually any plans we had for any particular day could be changed at the last minute … because, as retirees, almost anything we had planned to do could be postponed until another day or time! 

However, as Clare’s AD worsened, those feelings of excitement faded more and more … until they stopped completely.  It became increasingly difficult to become excited about anything.

Excitement … another feeling that went away as Clare’s AD worsened over time.

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Exhaustion …  Once Clare was in an assisted living facility, I came home from my visits feeling thoroughly exhausted.  Physically, mentally, emotionally … just totally exhausted.

On those evenings, I usually went straight to bed and fell asleep while watching TV …. often after a good cry.  That surprised me because, after I had placed Clare, I had expected that I would feel less exhausted than when I was serving as her 24/7 caregiver at home.

Before her placement, I felt exhausted all the time.  Answering the same questions over and over again was exhausting.  Searching for things that Clare misplaced each day was exhausting.  Repeating myself over and over again was exhausting. 

Daily battles over ADLs … Activities of Daily Living such as bathing, dressing, eating, taking medication, personal hygiene, etc. … were exhausting.  Especially after some of those battles were now starting to lead to heated arguments because Clare often refused my help when she absolutely needed my help. 

After her placement in the assisted living facility, I didn’t have to deal with everything on my plate that I had to deal with as her 24/7 caregiver at home.  Other than helping her in the bathroom during my visits, and sometimes having to change her clothing, I really didn’t have to deal with her ADLs anymore.  So … why was I so exhausted every single day and night? 

I honestly don’t know the answer to that question.  I only know that it was my reality.

Exhaustion … AD has a way of exhausting spouse caregivers, even when those spouses are living apart.

 

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

 

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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