Another Voice: NFL should do its part to raise Alzheimer’s awareness

 

With a new football season underway, NFL broadcasters and advertisers are expected to reach a very wide TV audience. Of the 50 most watched TV broadcasts last year, 33 were NFL games.

In October, as it has done each year since 2009, the NFL is promoting cancer awareness with its "Crucial Catch" campaign during its broadcasts. Players in past seasons wore special uniforms to show support for those diagnosed with cancer and to stimulate greater disease awareness. In the past 12 years, the NFL has raised more than $18.5 million for the American Cancer Society, and I applaud the NFL for taking this leadership role.

Another leadership role well suited for the NFL would be to have players wearing purple on their uniforms in November to raise awareness of Alzheimer’s disease and other forms of dementia. Alzheimer’s and other forms of dementia kill more people than breast cancer and prostate cancer combined.

According to a study reported earlier this year by researchers at Penn State University, “a single head injury could lead to dementia later in life. This risk further increases as the number of head injuries sustained by an individual increases.” 

In 2014, a successful lawsuit filed by retired players against the NFL concluded that “former players between 50 and 59 years old develop Alzheimer's disease and dementia at rates 14 to 23 times higher than the general population of the same age … and … rates for players between 60-64 are as much as 35 times the rate of the general population.”

The NFL knows it has a problem and has taken measures to try to prevent and lessen the effects of concussions. Unfortunately, even though concussions were reduced about 5% in 2020, Jeff Miller, NFL executive vice president, had to bluntly admit, “This is progress. This is not success.”

In 1985, President Ronald Reagan proclaimed November as National Alzheimer’s Disease Month, asking people in the United States “to observe that month with appropriate observances and activities.” That year, 2 million Americans had Alzheimer’s.

Today more than 6 million Americans have Alzheimer’s, the only disease among the top 10 causes of death in this country with no effective means of prevention, treatment, or cure.

With players wearing purple on their uniforms, NFL broadcasters and advertisers can educate people each November about Alzheimer’s disease and other forms of dementia, while also helping to raise money for research.

NFL Commissioner Roger Goodell once cited a principled stand taken by his father, former U.S. Sen. Charles Goodell, when the senator explained why he spoke up in opposition to the Vietnam War. Charles Goodell said, “It’s not easy to know what is right, but when you do know what is right, you have to have the courage to do it.”

Commissioner Goodell surely knows that it is right for the NFL to help promote Alzheimer’s awareness and research each November. The only question is, does he have his father’s courage to do what is right?

Allan S. Vann is a freelance writer and former caregiver to a spouse with Alzheimer’s.

Published in The Buffalo News on 10/16/21.  Access at: https://buffalonews.com/opinion/another-voice-nfl-should-do-its-part-to-raise-alzheimer-s-awareness/article_22c1edd6-2cf1-11ec-b2c0-eb7a546cd015.html

Personal Blog #25 … Tips from Michael Ellenbogen … a Person Living With Dementia and fellow member of the GEAR 2.0 Task Force ... 10/2/21

This Personal Blog (PB) is very different from previous PBs I have posted on this site.  I have already written PBs about GEAR 2.0, the NIH/NIA grant program seeking to improve hospital emergency room treatment for people with Alzheimer’s disease (AD) and other forms of dementia.  One of my fellow task force members is Michael Ellenbogen, a person living with dementia (PLWD).  When Michael was 49, he was diagnosed with early-stage AD … but that was only after Michael spent 10 years trying to receive a diagnosis for what was happening to him.  Doctors now believe he may have Frontotemporal Dementia (FTD) instead of young or early onset AD.  Regardless, Michael is now 63 and he continues to share his experiences to help improve life for those with all forms of dementia.  

I asked Michael to write about some of the things he thought were most important to share with both PLWDs and their caregivers so I could post these items in a Personal Blog.  I selected 4 items from Michael’s list to share in this column.  I will print Michael’s words in bold print, followed by my perspective as a former AD spouse caregiver.

1.  This disease is far worse than you can imagine. Just imagine that you are going in reverse from an adult to a child but you still have the knowledge of how things should be done but you are no longer capable of doing it.  For PLWD who are aware of what is happening to them, it is so very frustrating because they know that they are screwing up but can’t do much about it.   From my caregiver’s perspective, AD is even much worse than this description.  As this disease progresses from early to moderate to advanced stages and the PLWD continues “going in reverse,” the PLWD will also lose the knowledge of how things are done, not just the capability of how to do things.  Caregivers of those who are aware of their decline … not all PLWD are aware of how much they have declined … must also prepare for increasing frustration knowing there is nothing they can do to prevent this decline of their loved ones.  Both the PLWD and the caregiver must prepare to accept this reality.

2. Don’t argue about things that are not true or are remembered incorrectly, and sundowning makes it even more difficult.  Just trying to pay attention takes so much energy as the day progresses from morning to afternoon to night.  Just thinking about what to do takes up so much energy, I feel burnt out.  As my wife progressed from early to moderate stages of AD, I learned about something called “confabulation.”  Confabulation is a symptom of memory disorders often experienced by people suffering from dementia, traumatic brain injury, and a variety of other conditions. My wife would often “remember” events or activities that had never actually happened.  Even if presented with evidence to the contrary, she could not be convinced that her memory was faulty.  But she wasn’t lying to me when she confabulated … she genuinely believed that what she said was true.  Caregivers of PLWD should take Michael’s words to heart … don’t let yourself become involved in an argument you will not win, and be aware of the effects of sundowning.

3.  If you are going to have an angry face or tone, expect it 10 times worse from your PLWD.  I can vouch from personal experience that when I let my frustrations get the better of me, not only did I forget that my wife’s frustrations and feelings of anger were much greater than mine, but I also forgot how my reactions were affecting her.  Caregivers must not allow their frustrations or anger to show in their voice, facial expressions, or actions.  As with all situations when dealing with a PLWD, caregivers must always try to remember that their actions and reactions will have a great effect on their loved one’s actions and reactions.  So, in the words of one of my former teachers who posted only 2 words as her classroom rule each year: Be nice!

4.  This disease is like a curvy road and you need to be prepared for what is ahead to stay on track, and it will not be easy.  When I attended my first support group with fellow spouse caregivers, I was told that if you know one person with AD, then you know one person with AD.  All PLWD will eventually go through “stages” as this disease worsens.  However, some people advance rapidly through stages, some advance rapidly only through some stages, some advance slowly through all stages, and some advance slowly only through some stages.  Some go back and forth between stages because not all PLWD advance through stages in a completely linear fashion.  Some lose specific abilities forever as they advance to the next stage, while some regain those abilities for a limited period of time, only to then lose them forever.  And not every PLWD experiences the characteristics of a particular stage in the same way. 

As Michael said, “this disease is like a curvy road.”  Progression from early to moderate to severe stages of AD is a bumpy one, but you can learn about what lies ahead to avoid being surprised and to allow yourself to “stay on track.”  No one can predict exactly when or how quickly or slowly one will progress through stages of any form of dementia.  However, knowing what is coming … even if unable to know exactly when … will provide you time to plan for the future.

 

Personal Blog #24 … Personal Statement to GEAR 2.0 Task Force ... 8/16/21

The GEAR project … Geriatric Emergency care Applied Research … is winding down its year of having task force domain groups focus on four major areas affecting people with dementia or cognitive impairment in hospital Emergency Departments (EDs).  Groups focused on the best way to detect cognitive impairment/dementia in patients in the ED, the best practices to treat such patients, best ways to communicate with such patients and how to involve care partners in shared decision making, and best ways to facilitate transitions between the ED and home or to other facilities.  Groups worked on preparing questions to research in each area, prioritized questions, and conducted reviews of the literature.  Further discussion and voting will take place at upcoming “consensus conferences in September.  After these top priorities are selected, pilot grants will then be issued to, hopefully, provide some answers.  As stated on their new website, “The mission of the Geriatric Emergency care Applied Research (GEAR) network is to improve the emergency care of older adults and those with dementia and other cognitive impairments.  GEAR looks to identify research gaps in geriatric care and support research and evaluation of these areas”  https://gearnetwork.org/

As a former caregiver who participated in each of the four domain groups … zoom meetings for each domain were held monthly for the past year … I was given the opportunity to prepare a brief personal statement to be shared with participants at the consensus meetings in September.  I viewed this as an opportunity to share what I thought should be the two highest priorities of our group … the two areas needing most change to try to make ED experiences more effective for people with dementia.  Based upon my own experiences with my late wife in EDs, and the experiences of other caregivers who provided me feedback, here is what I prepared for that video statement. 

Should readers have any comments regarding this statement, or comments regarding any of my posted articles and personal blogs, please forward those comments to me at acvann@optonline.net.

Task Force Statement … Allan S. Vann

I am a former Alzheimer’s spouse caregiver.  When in moderate to severe stages, my late wife was brought to a hospital ED on several occasions.  The one common denominator of these ED visits was poor treatment.  I attribute that poor treatment to two overriding reasons … lack of training by ED staff, and the refusal of ED staff to see her as a higher triage priority.

One should expect better outcomes if ED staff are properly trained to diagnose and treat people with dementia, especially those in advanced stages.  Properly trained staff would know, for example, to use non-verbal communication and diagnostic techniques if the dementia patient is unable to understand questions or respond accurately.  If brought to the ED in pain after a fall, for example, it is futile to ask where the pain is or ask on a scale of 1-10 how much it hurts.  A knowledgeable physician might slowly apply pressure to different parts of the patient’s body to note reactions that would often indicate where and how severe the pain is.  Well-trained staff would also understand the value of asking caregivers, if present, for helpful information.

If dementia patients were a higher triage priority, issues in EDs that can unnecessarily cause increased discomfort and pain, let alone complicate diagnosis and treatment, could be lessened dramatically.  Issues such as increased anxiety, sundowning, restlessness, disorientation, and heightened confusion due to long waits for examination and diagnostic testing followed by longer waits for results of such testing, IV needles in arms for many hours, sensory overload due to bright overhead lighting, sounds of machines beeping and strangers and staff talking, lying on uncomfortable gurneys, effects of delays in taking daily medications which may specifically help lessen anxiety, increasing fatigue due to not eating until all testing is complete, and the list  goes on … all of these issues can be lessened to a great extent if people with dementia were a higher triage priority.  Inattention to these matters can also mask or exacerbate the very issues that led to the ED visit, or even cause new health issues, so ED staff must also recognize that it is extremely important to reach decisions to admit or discharge as quickly as possible.  

Many other spouse caregivers have shared similar ED experiences with me.  ED staff responsible for treating people with dementia need more and better education and training, and dementia patients must be given a higher triage priority.

Personal Blog #23 ... Letter to Acting FDA Commissioner re Aduhelm ... 6/11/21

 

On 6/7/21, the FDA approved the drug Aduhelm, Biogen’s aducanumab medication, an intravenous infusion to be administered monthly for people with Alzheimer’s disease.  Despite not one member of the FDA’s Advisory panel voting to approve this med, FDA approved its use anyway.  FDA determined that since Aduhelm helped clear some amyloid protein from the brain, it may be “expected to help slow dementia.”  However, Biogen’s own data do not support such a claim, and readers can read my Personal Blogs #11 and #12 to learn more about results of clinical trials with this drug. 

Aduhelm will also be a very costly drug.  It is priced at $56,000 a year.   As noted in Newsday on 6/10/21 (Lane Filler, page A25), “If 10% of American Alzheimer’s sufferers began using aducanumab, the tab would be $33.6 billion annually billed to Medicare for the still-solvent sufferers and Medicaid for those bankrupted by the disease.”  That is money that could be better spent elsewhere. 

Earlier today I sent the following letter via email to Janet Woodcock, acting FDA Commissioner, at Janet.Woodcock@fda.hhs.gov  re FDA approval of AD med, Aduhelm:

As a former Alzheimer's disease (AD) caregiver ... my wife died after her AD struggle in 2016 ... I want to register my strong objections to the FDA's decision to approve yet another "bottle of hope" for people with AD.  Having been a member of an AD spouse support group for many years, having briefly facilitated spouse support groups for the Alzheimer's Association, and having had more than 100  articles published about AD (www.allansvann.blogspot.com), I can attest to the serious negative consequences approval of Aduhelm will have for many surviving spouses.  

In 2013 I wrote about FDA-approved AD meds in one of my articles.  Quoting from that article, "Despite there being no research to support the effectiveness of these AD medications beyond a few months, at best, many doctors continue prescribing these medications for years and years. Not only can these AD medications no longer be helping their patients, but they may actually be causing some harm. Maintaining patients on these medications long term may provide false hope to patients and their caregivers. I refer to these medications as “bottles of hope” because as I watch my wife decline, I know that the medications cannot possibly be helping anymore, if they ever did at all.  For many patients and caregivers, the high costs of AD medications present an economic hardship. Money spent on AD medications is money that might otherwise be spent on day care programs, companions, home health aides, or other services that would actually improve the quality of their lives."

I witnessed AD spouse caregivers having to spend life savings on AD meds.  Some had to sell their homes when placing spouses in assisted living or to cover costs of home health care aides.  Now even more will have to do so because of money needlessly spent on this latest bottle of hope you have approved.  Based upon data I have seen ... a difference of 0.39 on an 18 point scale of cognitive and functional ability ... I can understand why not one member of your 11 member Advisory panel of experts that evaluated the data for FDA voted for approval.

I am SO sorry that FDA has approved yet another costly "bottle of hope" that will now financially ruin the lives of more AD spouse survivors with virtually zero benefit to their loved ones.  This is just not fair to people with AD, and not fair to their eventually surviving spouses.

After writing this email to Dr. Woodcock at FDA this morning, we entered into a series of email exchanges during the day.  Here is what we wrote to each other, beginning with her response to my email:

---------------------------------------------------

I’m very sorry to hear of your loss.  Thank you for writing. This new drug, unlike the previous ones, is intended to slow the course of the disease rather than simply help with symptoms.  Janet Woodcock

---------------------------------------------------

Thank you for your prompt reply, but good intentions do not help loved ones nor do they help pay for aides and other needs of loved ones. If you were a member of a spouse support group ... and I hope you NEVER have that experience ... you would understand the severe negative consequences these meds have on loved ones with AD and their spouses. With all due respect, I think this is not just the wrong decision, but worse another decision that will make life an even greater hardship for those who survive. In fact, I just posted a column opposing this decision on my site.

I hope you reconsider your decision asap.

-----------------------------------------------------

I am sorry you feel this way.  I have had a close family member die of Alzheimer’s disease and am well aware of the trauma to all involved.  Slowing the rate of cognitive decline is an important goal.  Janet Woodcock

-----------------------------------------------------

I agree 100% that slowing the rate of cognitive decline is a very important goal. My gripe is that there is no clear evidence that this med will actually slow cognitive decline in a meaningful way. Unless and until Biogen can produce clear evidence that their medication does slow cognitive decline to a significant extent, it remains only an expensive bottle of hope. The costs to Medicare and the thousands of dollars patients will be facing with deductibles will cause much more harm than good.

----------------------------------------------------

I won’t continue writing to you on this topic because it seems we will just have to agree to disagree.  However, I just read that a 3^rd member of your 11 member Advisory Panel has now resigned as a result of this FDA approval.  To quote from CNBC …Dr. Aaron Kesselheim, a professor of medicine at Harvard Medical School, said the agency’s decision on Biogen “was probably the worst drug approval decision in recent U.S. history,” according to his resignation letter obtained by CNBC.“  

At the last minute, the agency switched its review to the Accelerated Approval pathway based on the debatable premise that the drug’s effect on brain amyloid was likely to help patients with Alzheimer’s disease,” he wrote in resigning from the FDA’s Peripheral and Central Nervous System Advisory Committee.

He wrote it was “clear” to him that the agency is not “presently capable of adequately integrating the Committee’s scientific recommendations into its approval decisions.”  “This will undermine the care of these patients, public trust in the FDA, the pursuit of useful therapeutic innovation, and the affordability of the health care system,” he said.  

Dr. Woodcock … I thank you for allowing me, a former AD spouse caregiver, to have access to you in sharing my feelings and concerns.  We both want the same thing, Dr. Woodcock. Now 74, I will remain an AD patient and caregiver advocate for life.  I continue writing for publication and posting personal blogs to help further AD awareness, to try to bring about change in the medical profession, and to help other caregivers.  I want so much to see a new medication that will truly slow down the progression of the disease to allow a longer period of quality of life.  I want so much to see development of a new medication that will successfully treat if not cure AD.  But this new medication is just not the one that FDA should be lowering their standards for, not the one to create false hope among those suffering with AD and not the one to create such financial stress for caregivers.  When an Advisory FDA panel has 11 experts and not even one of those experts votes to approve this medication, one has to wonder how something like this could happen.  But, again, thank you for allowing me to express my concerns.

Alzheimer’s disease deserves more federal funding for research

 

According to the latest data from the Alzheimer’s Association, 580,000 people aged 65 and older are already living with Alzheimer’s disease (AD) in Florida, and that number is expected to grow to more than 700,000 by 2025.

In his address to Congress on April 28, President Joe Biden proposed the creation of an Advanced Research Projects Agency by the National Institutes of Health (NIH) that would “have a singular purpose: to develop breakthroughs to prevent, detect, and treat diseases like Alzheimer’s, diabetes, and cancer.”

 As the most common form of dementia, AD is consistently ranked by the CDC (Centers for Disease Control and Prevention) as the sixth-leading cause of death in this country and the only one of the top 10 causes of death with no means of prevention, effective treatment or cure.

 A study funded by NIH and published last year found that “the actual number of deaths linked to dementia may be about three times greater than what is reported on U.S. death certificates.” Previous studies came to that same that same conclusion … that reported deaths due to AD are severely undercounted.

According to the CDC’s latest mortality data, in 2018, there were 121,499 deaths due to AD. If actual deaths due to AD were even 50% higher, except for last year due to the high number of Covid-19 deaths, AD would already have been listed as the 3rd leading cause of death in the U.S. each year since 2008. Undercounting and underreporting of mortality due to AD may be a major factor contributing to the relative underfunding of AD research by the NIH.

 In 2018, the CDC recorded only 5,044 deaths due to HIV/AIDS, yet the NIH has awarded more research funding for HIV/AIDS, a disease with effective prevention and treatment and so many fewer deaths, than it has for AD in every year since 2008 … and continues to do so again for 2021.

 NIH research funding for AD has been increasing in recent years, but it is still not enough. Between 2000 and 2018, deaths resulting from HIV and heart disease decreased, whereas reported deaths from Alzheimer’s increased 146.2%. AD and other forms of dementia already kill more people than breast cancer and prostate cancer combined.

 I strongly support NIH research funding for heart disease, cancer, HIV/AIDS and for many other diseases. But why isn’t our country funding AD research at a much higher level? AD is already “the most expensive disease, costing more than heart disease and cancer” and it is estimated that over the next 30 years it will cost “nearly $20 trillion (in 2020 dollars) to care for people with AD and other dementias, two-thirds of which will be borne by Medicare and Medicaid.”

According to Alzheimer’s Disease International, “there are currently estimated to be over 50 million people worldwide living with dementia” with that number expected to rise to 152 million by 2050. According to the Alzheimer’s Association, more than 6 million Americans are now living with AD, a number projected to rise to nearly 13 million by 2050. The World Health Organization now refers to dementia as a “global epidemic.”

As President Biden suggested, isn’t it time for the NIH to finally provide the necessary research funding to find how to prevent, detect, and treat AD sooner rather than later?

Allan S. Vann is a former Alzheimer’s spouse caregiver and a member of a $7.5 million task force funded by the National Institutes of Health and National Institute on Aging to improve care for people with dementia in hospital emergency departments.

Published online in the Orlando Sentinel, 5/22/21.

Personal Blog #22 ... Voices of Dementia Caregivers ... 3/23/21

 

The Havergal School, a private Pre-K -12 girls boarding school in Ontario, Canada has a club consisting high schoolers who visit and engage with dementia patients regularly at a nearby nursing home.  The club issues a newsletter that includes interviews with people who care about those with dementia, and I was asked to reply to written questions which were then published in their January, 2021 newsletter.  Maybe some readers will find something helpful in my answers.

Monday, January 11, 2021

Voices of Dementia Caregivers: Allan S. Vann

This month, we had the wonderful opportunity to interview Allan S. Vann, a retired school principal in New York, USA who became a full-time caregiver to his late wife Clare since her diagnosis of early-onset Alzheimer’s. He is here with us today to share some insight into his experiences as a caregiver for a loved one with dementia. 

1. If you are comfortable sharing, can you tell us about your caregiving experience and your loved one’s journey with dementia?

For the first four years of my wife’s journey with early/young-onset Alzheimer’s disease (AD), my life was one of non-stop daily 24/7 stress, with much sadness and anxiety, often accompanied by periods of mild and/or serious depression, along with intense feelings of anger, doubt, guilt, frustration, loneliness, and many other emotions.  Similar strong emotions often result in many caregivers taking anti-anxiety or anti-depressant medication, sleeping pills, meeting regularly with doctors or therapists, or experiencing dramatic weight gain or loss.  In my case, stress drove me to my comfort foods and I gained nearly 100 pounds during those years.  I still haven’t lost the last 40. Stress also led me to develop eczema on my face and scalp.

Helping a loved one with early to moderate stage Alzheimer’s with the most basic activities of daily living ... brushing one’s teeth, showering, getting dressed, eating, taking daily medications, etc. ... becomes progressively more difficult.  Caring for a loved one who is constantly confused, no longer remembers your name or who you are, or who can occasionally become aggressive, is emotionally painful. 

After caring for my wife by myself at home for almost 7 years, I finally had to place her in the dementia unit of an assisted living facility.  Caregiving then was then no longer my primary role … my role morphed from primary caregiver to primary care advocate to make sure that my wife was being treated properly each day.  But that new role didn’t really lessen my daily stress because even though my wife was in excellent facilities, many staff members were not sufficiently motivated, trained, educated, or properly supervised to consistently provide the care I had expected her to have.  That led to many meetings with administrative staff to discuss instances of poor practice or examples of uncaring personnel. I remained her care advocate when she spent a month in a psychiatric facility, and finally when she entered a nursing home.

Fortunately, due to long-term health care insurance, I did not face perhaps the biggest cause of stress for AD caregivers here on Long Island, NY.  There is a tremendous amount of financial stress faced by most caregivers.  Unless one qualifies for Medicaid, is very wealthy, or is lucky enough to have outstanding long-term health care insurance and prescription drug coverage, caregiving costs can be astronomical.  For someone with AD here on Long Island, assisted living facilities generally run between $7-$10,000 per month ... or more ... and nursing homes will charge about $16-$19,000 per month ... or more.  24/7 home health aides will cost about $15,000 per month ... or more.  Caregiving costs can drain not just your loved one’s bank account, but also the retirement life savings that the caregiver will need for the rest of his/her life. 

Once my wife entered assisted living, I suddenly had to deal with daily loneliness and enormous lifestyle changes.  Being alone in bed those first few nights after placement was painful and lonely beyond words ... and continues to be painful and lonely at times.  Living alone for the first time after more than 45 years of marriage brought incredible sadness.  I felt that I needed to be with my wife every day, so I visited her daily for 4 hours and I also took her out for longer periods a few times each week.  At a certain point, facility social workers, observing my stress, suggested that I not visit so often.  I tried doing that for a week or two, but I missed not seeing my wife so much that I went right back to visiting her daily.

One article I wrote during that time was titled, “An Alzheimer’s Spouse, Married Yet Widowed,” because I truly felt both married and widowed at the same time.  I loved being with my wife each day, even when she no longer knew who I was or that we were married.  But many days were extremely painful.  We would be cuddling on a couch in the facility lounge, I’d tell her that she looked beautiful and how much I loved her, and she’d say to me something like, “Oh, thank you.  You’re such a nice man.”  Or, she’d say, “You’re such a nice lady. I love you too ... but can you please help me find my husband?”  Sometimes I’d say something like, “Honey, guess what?  I found him; I found your husband.  It’s me, Allan ... I’m your husband.”  To which my wife would usually respond with something like, “Oh, that’s nice.  But can you help me find my husband?”  It is absolutely no surprise to me that research finds caregiver stress a high-risk factor for caregiver mortality. 

One person in my own Alzheimer’s support group said that caring for her husband was “grief on the installment plan.”  I couldn’t agree more.  I experienced what psychologists refer to as “anticipatory grief” for so long that I didn’t expect my wife’s death to hit me as hard as it did.  But I was very wrong.  Her death sent me into a period of 3 years of depression followed by another half year of overwhelming sadness.  I have only been able to truly move on with the rest of my life during this past year because I was lucky enough to find that special someone.

 

2. What were some of the most rewarding and challenging moments you encountered in your interactions and relationships? 

The most rewarding moments were those fading moments of clarity with my wife … when she knew who I was, that we were married, and that we loved each other.  We had a “fairy tale” marriage for more than 40 years before she had to deal with AD … she died a month before her 69th birthday, and 2 months before our 49th anniversary.  So those few and far between moments were very special.  But so was every single visit when I knew I was losing her.

The most challenging moments were simply dealing with my emotions each and every day … both when I was with my wife, and when I was home alone.

3. What is one thing you wish people knew about dementia? 

I suppose there are 2 things I wish more people knew about dementia. The first is that it doesn’t only affect the elderly.  My wife’s first symptoms surfaced in her late 50s.  The 2nd thing I’d like people to know is that research funding to find a cure for AD and other forms of dementia should be a much higher priority in many countries, including in the U.S.  For example, our CDC, Centers for Disease Control, consistently lists AD as the 6th leading cause of death in this country, and admits that number of deaths is severely undercounted (a perfect example is my wife’s death certificate which does not list AD as a contributing cause of death) and is probably the 3rd leading cause right behind heart disease and cancer … this year being excepted, of course, since Covid-19 became the 3rd leading cause of death in the U.S. in 2020.  Yet many other diseases causing many fewer deaths regularly receive more federal research funding … despite AD being the only one of the top 10 causes of death with no effective means of prevention, treatment, or cure.

4. Have you ever encountered any stigma or stereotypes surrounding dementia that you would like to dispel?

My wife lost almost all of her friends after she was diagnosed with AD, something that is very common for people with dementia.  Either some people aren’t sure of how to act in the presence of people with AD, or they are scared, or maybe even very ignorant people feel they can “catch” this disease from someone who has it.  Now that I’m writing this, I just may do my own research into why this is so!!   But, for whatever reasons, too often people with dementia lose their friends in a very short time.

5. What advice would you give to others who have a loved one with dementia? 

I recently made a presentation to caregivers that included a handout listing “Ten Steps to Take When the Diagnosis is Alzheimer’s/Dementia.” After my presentation, I posted those 10 steps as a Personal Blog on my website at www.allansvann.blogspot.com.  For more information about each step, please go to my website.

1. Take away the car keys. 

2. Meet with an eldercare attorney. 

3. Meet with a certified financial advisor

4. Discuss long-term care options. 

5. Learn about Alzheimer's and other forms of Dementia at responsible websites.

6. Locate daycare options.

7. Join a good caregiver support group.

8. Check out websites maintained by other caregivers.

9. Travel with your loved one now ... while you still can.

10. Check for possible free respite opportunities for yourself.

 

We would like to sincerely thank Allan for taking the time to share with us his personal experiences and takeaways from his experience as a dementia caregiver. Allan also runs a blog called Reflections of an Alzheimer’s Spouse, and can be found at www.allansvann.blogspot.com

Access online at: http://dementiaawarenessprogram.blogspot.com/2021/01/voices-of-dementia-caregivers-allan-s.html 

Personal Blog #21 ... Full Acceptance of a Spouse’s Death Due to Alzheimer’s ... 3/3/21

Next month makes it 5 years since I lost my wife, Clare, to early/young onset Alzheimer’s disease (AD).  Having experienced years of “anticipatory grief,” I thought I’d be able to move on quickly after Clare’s death … but I was wrong.  I ended up dealing with depression for 2 years, followed by overwhelming sadness for more than another year, until finally able to move on with the rest of my life. 

For me, the most important part of moving on was trying to find love again. With online profiles posted on 4 dating sites, meeting women was not a problem but meeting the “right” woman seemed impossible.  After nearly 50 years of a “fairy tale” marriage, I just could not find someone as special as my late wife.  I was about to give up and then … serendipity!  The “right woman” turned out to be someone I’d known for 25 years, and I have now been in a wonderfully loving relationship during the past year.   

I consider myself incredibly lucky to have found love again and look forward to spending the rest of my life with my “second act.”  But if I am so happy and in love again, why do I still sometimes cry about losing Clare?

I recently watched a TV show where 2 characters, I’ll call them Joe and Bob, are discussing the grieving process.  Joe is trying to comfort Bob, who is struggling to move on after losing his wife earlier that year.  Joe asks Bob if he knows the 5 stages of grief and Bob says yes …  denial, anger, bargaining, depression, and acceptance.  Joe says to Bob that it’s only been a few months since he lost his wife and to give himself more time to reach acceptance.  Bob, knowing that Joe also lost his wife decades earlier, asks Joe how long it took him to reach acceptance.  Joe says he’ll let Bob know if he ever gets there … that he is still stuck in stage 2, anger.

I thought I had reached acceptance, and that allowed me to move on to try to find love again.  I no longer mourn Clare’s death on a daily, weekly, or monthly basis.  But sometimes I still experience anger … anger directed only at myself, expressed in the form of guilt.

I sometimes see something while watching TV that makes me feel very guilty … that I fell short of giving Clare more happiness.  I think, “Why didn’t I do more with Clare during her final days of clarity?”  Fortunately, each time that happens the tears and anger pass quickly because I know deep inside that I did all I could.

I think that what I am really saying to myself is that I wish I had some sort of “advance notice” of the exact time when Clare’s last moments of clarity would end.  I wish I would have known in advance that her final downward spiral really was her final downward spiral … the one she would never return from, the one that was never-ending and ever-deepening, that black hole where there is no awareness and from which there is no escape.  I wish I had more time with Clare as best friends, as husband and wife, as lovers before I became a total stranger to her.

I have gone through the 5 stages of grief, come out “the other side,” and moved on.  Yet, in some ways, I think that I have remained stuck in that second stage of grieving, anger, even though it has been so long since losing my wife.  I am happy again, smiling and laughing again, in love again, and looking forward to spending the rest of my life with my second act.  But some anger, expressed as guilt, still remains.

Maybe it is more common than I had thought for some surviving AD spouses to still feel angry at themselves after many years as a widow or widower.  Maybe after many years in a loving marriage, grief … in one form or another … never truly ends for surviving AD spouses.  Not even when surviving spouses are lucky enough to find love again.

Swiss psychiatrist Elisabeth Kubler-Ross, who is credited with describing the 5-stage grieving model, states that my grief will never truly end.  She wrote: “The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same.” 

Whereas I feel extremely lucky to finally feel “whole again” with a woman I love, I have also finally accepted that I will forever grieve the loss of my wife.  Other surviving AD spouses who may occasionally find themselves re-experiencing painful memories must also accept this reality, with or without new love in their life. 

Unlike “Joe,” I have now made peace with that statement by Kubler-Ross.  I have acknowledged that it is “okay” for me to continue experiencing brief intense feelings of loss on occasion.  It has taken me 5 long years to get to this point in my grieving process … but I think I can finally say that I have reached full acceptance.

 

 

Personal Blog #20 … Research Study at Rice University, Texas … 1/16/21

 

I am passing along some information I recently received from Audrey Kuykendall, an Undergraduate Research Assistant  at Rice University in Texas.  She is seeking dementia spouse caregivers willing to participate in an online study.  Below are excerpts from the email I received:

 

“I am reaching out because our lab is running a fully remote study that examines The Impact of Emotions on Social Distancing among spousal caregivers for Alzheimer’s disease or related dementias during the COVID-19 Pandemic.  This study is funded by the National Institutes of Health (NIH) and has been approved by Rice University’s Institutional Review Board (IRB).”

 

“The purpose of this research study is to understand the factors (e.g., feeling unhappy, lonely, frustrated) that influence compliance with social distancing recommendations during the COVID-19 pandemic. In addition, this study aims to understand how negative emotions (e.g., feeling unhappy, lonely, frustrated) along with social distancing requirements influence caregivers’ confidence in their ability to provide high-quality care for their spouse with dementia during the COVID-19 pandemic.” 

 

“We are looking for participants who 1) are the principal person taking care of the spouse with a physician-based diagnosis of dementia/Alzheimer’s Disease, 2) devote at least 4 hours daily to the care of the spouse for at least the last 3 months, 3) are married or self-defined as long term committed partners for at least 3 years, 4) have a personal smartphone with a cellular data plan for the mobile portion of the study and internet access to complete the surveys, 5) have access to a personal computer or laptop with internet access to complete the surveys, and 6) are fluent in English. Participants should not have acute or uncontrolled medical illness (e.g., major surgery, autoimmune disorders).”

“If you are interested, follow this link to complete the online eligibility survey https://riceuniversity.co1.qualtrics.com/jfe/form/SV_9ogHDVfJqn1oEAJ. The principal investigator of this study is Dr. Christopher Fagundes in the BMED Lab at Rice University.”

You can call the Rice University research lab for more information at 832-819-4297 or go to bmed.rice.edu/current-projects/project-care/.