Friday, June 11, 2021

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  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 (, 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 3rd 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.

Monday, May 24, 2021

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.

Tuesday, March 23, 2021

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  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

Access online at: 

Wednesday, March 3, 2021

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.



Saturday, January 16, 2021

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 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

Friday, December 18, 2020

Personal Blog #19 ... Ten Steps to Take When the Diagnosis is Alzheimer's ... 12/18/20

Yesterday I made a zoom presentation to caregivers and as part of my presentation I updated my previous list of important steps to take once a loved one is diagnosed with Alzheimer's disease (AD) or some other form of dementia.  Here is that updated list of Ten Steps to Take: 

1. Take away the car keys.  Before your loved one injures him/herself, or causes an accident that injures someone else or causes vehicle or property damage, you should take away the car keys.  This is often a very difficult and emotionally strained decision, but it is a decision that must be made.  Whereas it is true that some people diagnosed with dementia can continue to drive safely for quite some time, the issue is that there will be a time when your loved one will not be able to drive safely … and no one can predict just when that time will come.  So … better to take away the car keys before your loved one accidentally causes injury or property damage … or becomes lost and forgets how to call for help.

2. Meet with an eldercare attorney.  The attorney will review and/or prepare necessary end-of-life documents ... wills or trusts, living wills, health care proxies, and durable power of attorney.  You should also discuss long-term health care options with your attorney.  If you have long-term health care policies, review the provisions together.  Also, ask the attorney to review your current financial situation to determine if any assets in your loved one's name, or in joint/custodial ownership, should be moved solely to your name.

3. Meet with a certified financial advisor.  You and your financial advisor should discuss how to preserve, protect and grow your current income, investments, and other assets …  while also discussing plans for how you will pay for long-term care.  You should also discuss long-term care insurance options with your financial advisor to see if your advisor can be helpful in securing some options for you.

4. Discuss long-term care options.  Does your loved one prefer to stay at home for as long as possible, or prefer to be in a residential facility?  What do you prefer?  What will you do if no longer able to care for your loved one at home by yourself?  If not discussed previously and your loved one still has moments of clarity, now is the time to have these discussions with your loved one.  You should also try to leave yourself sufficient time to visit and check out various facilities in advance, and/or check out home health aide providers.  All facilities and providers are not the same, and you’ll need to do your homework.  There is a lot of helpful information on the NYS Department of Health website …   


As you check out different facilities, you will learn that many facilities with Alzheimer’s patients are filled 100% of the time, so you will probably need to place your name on a waiting list.  At some facilities, if you do not place your loved one immediately when notified that a bed is available, your name will go back to the bottom of their wait list.  In other facilities, you can “pass” when notified but still remain at the top of their wait list.  There are a few different types of assisted living facilities, and there are also memory care facilities in which all residents have dementia or memory issues.  Similarly, home health care providers often charge different amounts depending on hours per day or per shift, holidays, meal requirements, etc.  So, if at all possible, leave yourself time to check out your various long-term care options well before you’ll need to make those decisions.


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


The Mayo Clinic has excellent information.  Access at


Johns Hopkins also has excellent information.  Access at


Major organizations such as the Alzheimer’s Association … access at  also provide lots of helpful information.


There is also a wealth of excellent information at government sites sponsored by the National Institute on Aging and the National Institutes of Health.  Access at


Educate yourself about the stages of Alzheimer’s so you will have knowledge about what to expect.  The best presentation of the clinical stages of AD that I have found is the one provided by the Fisher Center for Alzheimer’s Research Foundation, a division of The Rockefeller University.  Access at


And don’t forget about local organizations here on Long Island.  My favorite is LIAD, the Long Island Alzheimer’s and Dementia Center (formerly known as LIAF, the Long Island Alzheimer’s Foundation which had been based in Port Washington).  At LIAD’s home offices …1025 Old Country Road in Westbury … 516-767-6856 … there are day care programs, support groups, and other services.  LIAD also has satellite branches in both Nassau and Suffolk.  LIAD can be accessed at


6.  Locate day care options – Social day care programs are a win-win for loved ones and their caregivers, particularly when loved ones are in early to moderate stages of dementia.  The person with AD/dementia can engage socially with others who are also dealing with similar issues while having an opportunity to sing, dance, play games, etc. … and, while your loved one is engaged, you can enjoy several hours of respite time.  LIAD provides such programs, as do other organizations such as Ys, JCCs, town senior citizen departments, adult homes for seniors, and even some assisted living/nursing home facilities.

7. Join a good caregiver support group.  Try to find a group that meets solely for caregivers in your position ... for example, just for spouses, or just for children caring for their parents.  Such groups can focus more sharply on common issues.  But if you cannot find such a group, joining a mixed group is better than no group at all.  Try to find a support group meeting at least twice a month … but if such groups are unavailable, joining a group meeting only once a month is better than joining no group at all.  You will learn many helpful tips in a good support group, learning strategies from other caregivers who also “get it” ... other caregivers who truly can appreciate and understand what you are experiencing.  The emotional support from fellow caregivers can also be very helpful.  I personally learned more helpful information from other caregivers in my support group than I learned from all the articles and books I read about AD.

8.  Check out websites maintained by other caregivers.  One or more of the many online caregiver sites may provide you with just the support and guidance you are looking for.  I sought out a few dozen websites just by doing a Google search, and found a few to be very helpful.  I also maintain a website to help other caregivers.  I began my website in 2013 at the recommendation of a medical journal editor.  I have information about my own personal journey, and I post copies of my published articles.  To date I have had more than 100 articles published in peer reviewed medical journals, major newspapers, caregiver magazines, and on organization websites.  I also post occasional personal blogs that I do not send out for publication anywhere else … I simply post them on my website.


I don’t promote my personal website with advertising, but 1000-1500 visitors come to my site every month to read my articles.  My point is that you can learn a lot from people who have already experienced what you are now experiencing or soon may be experiencing.  If you’d like to check out my website, it can be accessed at  On my site you can even see a few minutes of a CBS Evening News interview with Clare and me!


9. Travel with your loved one now … while you still can.  At my first spouse support group meeting, I mentioned that Clare and I had traveled a lot and had already placed a deposit on a trip to Australia that we had planned to take in 12 months.  A wise woman whispered to me on the way out, “Allan ... don’t wait to take that trip.  Your wife may not be able to travel a year from now.”  That night I booked a different trip that we took a few months later ... and that turned out to be our last major trip.  Due to Clare’s worsening condition, I had to get our deposit back on that planned trip to Australia.  If you have planned to take any trips with your loved one in the future, please don’t wait too long.  Take those trips now or in the next few months … or, given that I am writing this at a peak time of Covid infections, once it is safe to travel again … because your loved one may not be able to travel a year from now.


10.  Check for possible free respite opportunities for yourself

Road Scholar ( is the nation's largest not-for-profit educational travel organization. In 2015, Road Scholar created The Caregiver Grant (access information at: to provide respite time for family caregivers by providing grants of up to $1500 to help offset costs of an educational travel experience.  Individuals 50 and older living in the United States and currently serving as caregivers ... or caregivers who have lost loved ones within the past two years ... are eligible to apply for a grant, regardless of whether the loved one is receiving or had received home care, adult day care, hospice care, memory care, nursing home care, visiting nurses, or comparable or related services. 

Caregiver Grant recipients are responsible for their own transportation to and from their travel destination, but Road Scholar will cover all other costs ... accommodations, meals, taxes, gratuities, a travel protection plan, and any fees for lectures and activities up to that $1500 amount.  Specific information about Road Scholar caregiver grants, including application forms, may be found on their website.



Friday, October 2, 2020

Reducing COVID Deaths in Assisted Living Residences and Nursing Homes

The high death rates in Assisted Living Residences (ALRs) and Nursing Homes (NHs), especially in New York, have been attributed by some to positive COVID test results among staff who then infect residents.  To whatever degree that may be true, the advanced age and underlying conditions of so many people in ALRs and NHs make such facilities high risk for negative COVID outcomes.2   Even with such high risks, however, some families have little choice but to place or keep their loved ones in ALRs and NHs. 

As a former Alzheimer disease spouse caregiver who visited my late wife for nearly 3 years in dementia units of an ALR and NH, I believe that there are actions that can be taken now to possibly reduce COVID deaths in such facilities.  I would recommend that these 4 factors be looked at more closely:

Availability of Medical Staff

In NY, there is a minimal requirement for the presence of physicians in NHs. According to the New York State Department of Health, Nursing Homes in New York State, “The frequency of (attending physician) visits shall be no less often than once every 30 days for the first 90 days after admission, and at least once every 60 days thereafter.”   This is simply not acceptable!  My wife’s ALR had 2 “visiting” doctors who each came onsite for about 3-4 hours every week, but often did not see my wife during their visits unless I specifically requested that she be seen. My wife’s NH had one doctor “on call” for its 300 residents and was so busy that numerous requests to meet with him were unsuccessful.   

To provide better medical care to residents, especially during this pandemic, ALRs and NHs must have well trained doctors available onsite, and more often.  As soon as possible COVID symptoms are detected, decisions should be made on either immediate treatment in that facility, or hospitalization.  Delays due to time are unacceptable, but only if a doctor is onsite will time delays be avoided.

Quality, Training, and Supervision of Non-Medical Staff

Whereas there are many highly dedicated and caring people working in these facilities, too many staff members are simply not given proper training, and too many are simply not dedicated or caring.  Aides are often paid at, or barely above, minimum wage.  According to the Paraprofessional Healthcare Institute, its latest available data from 2016 indicated that “nurse aides, who provide most of the direct care in nursing facilities, earn near-poverty wages.” 4  To attract more highly qualified people, salaries must be increased immediately—especially given the risks that aides are taking each day during this pandemic by being in such close contact with residents. 

Supervisors must provide, or arrange for others to provide, adequate orientation and training for every aide.  Supervisors, often underpaid—between $29,000 -$38,000—also need more training.Based upon my observations on an almost daily basis, too many supervisors remain closeted in their offices instead of being out on the floor directly observing and supervising aides interacting with residents.

Well-trained aides and supervisors who recognize the earliest signs of possible COVID can alert doctors onsite and may help prevent some deaths.

Testing and Personal Protective Equipment (PPE)

There must be better testing capabilities, PPE, and frequent COVID testing with results available within hours so personnel testing positive can be sent home immediately before infecting others. That is a recognized “given,” but ALRs and NHs need better plans in place to immediately replace absent staff.  Residents already often lack proper attention due to shorthanded staffing on many days.With higher salaries, more people might be willing to become “substitute emergency aides.”  However, before being placed on any substitute list, aides must also receive proper orientation and training.  Shorthanded staffing increases the chances of staff not recognizing the earliest signs of COVID in residents. 

State Supervision Responsibilities

When my wife was admitted to her NH, I was told the regular visiting hours.  However, I should have been told that state and federal law allow a spouse to visit anytime.  When I learned about this legal right, I contacted the NYS Department of Health and was told that all NHs in NY are in full compliance with this law.  But that was not true.  I went to the DOH website listing of about 630 NHs throughout the state, and I called every 10th NH on that list to ask about their visitation policies.  Of the 63 NHs I contacted, only 24 indicated that spouses can visit anytime.  Sadly, 39 of the 63 NHs indicated that spouses can only come during regular posted visiting hours, which was not in compliance with state and federal law.7

Admittedly, I did this survey in 2016, 4 years before Covid played havoc with all NH visitation policies.  However, my point remains valid … whatever new state laws or mandates arise to make ALRs and NHs safer for residents, unless the state DOH exercises better supervision with frequent (and, I would suggest, unannounced) onsite inspections, meaningful change may not happen.

One Last Point

For as long as this pandemic is with us, facilities must find ways to designate safe areas where visitors can briefly meet with residents.  One way to make this happen is to construct a temporary “safe corridor,” either within the facility or in a “tent-like” open or enclosed attachment to the facility.  A safe corridor would enable visitors to enter, meet with residents, and leave without being in contact with others. 

I cannot even imagine the pain of ALR and NH residents, and their families, who have been unable to visit with each other during these past many months.  The pain of residents dying such lonely deaths is not something that should be allowed to continue.  ALR and NH visitor restriction policies must be changed immediately.

Dr Vann has written frequently for caregiver magazines, other medical journals, and major newspapers. After his late wife, Clare, was diagnosed with early onset Alzheimer disease, Dr Vann made it a point to increase public awareness of Alzheimer and to help fellow caregivers. 



1.     New York State Department of Health. Data Indicates COVID-19 Was Introduced into Nursing Homes by Infected Staff. July 6, 2020.

2.     The New York Times. More than 40% of U.S. Coronavirus Deaths Are Linked to Nursing Homes. Updated on August 13, 2020.

3.     New York State Department of Health, Nursing Homes in New York State.  Role of the Attending Physician in the Nursing Home. 2011;(pages 4-5).  

4.     Elder Law Answers. How Low Nursing Home Wages Are Contributing to the Spread of Covid-19.  April 12, 2020.  

5.     Salary. How Much Does a Residential Supervisor Make in the United States? May 28, 2020.

6.     Reuters. Special Report: Pandemic Exposes Systemic Staffing Problems at U.S. Nursing Homes. June 10, 2020.  

7.     Annals of Long-Term Care. Is Your NH Visitation Policy in Compliance with Federal Law? [blog].  May 9, 2017.

Published in Annals of Long-Term Care, October 1, 2020.  Access online only at: