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/.

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 … www.health.ny.gov   

 

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 https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/symptoms-causes/syc-20350447

 

Johns Hopkins also has excellent information.  Access at https://www.hopkinsmedicine.org/health/conditions-and-diseases/alzheimers-disease

 

Major organizations such as the Alzheimer’s Association … access at www.alz.org …  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 https://www.nia.nih.gov/health/alzheimers

 

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 https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

 

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 https://www.lidementia.org/

 

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 www.allansvann.blogspot.com.  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 (http://www.roadscholar.org) is the nation's largest not-for-profit educational travel organization. In 2015, Road Scholar created The Caregiver Grant (access information at: https://www.roadscholar.org/about/financial-assistance/caregiver-grants) 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.

 

 

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.¹   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.” ³   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.⁵ 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.⁶ 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 10^th 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. 

References:

 

1.     New York State Department of Health. Data Indicates COVID-19 Was Introduced into Nursing Homes by Infected Staff. July 6, 2020. https://www.health.ny.gov/press/releases/2020/2020-07-06_covid19_nursing_home_report.htm.

2.     The New York Times. More than 40% of U.S. Coronavirus Deaths Are Linked to Nursing Homes. Updated on August 13, 2020.  https://www.nytimes.com/interactive/2020/us/coronavirus-nursing-homes.html.

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). https://www.health.ny.gov/facilities/nursing/all_services.htm.  

4.     Elder Law Answers. How Low Nursing Home Wages Are Contributing to the Spread of Covid-19.  April 12, 2020.  https://www.elderlawanswers.com/how-low-nursing-home-wages-are-contributing-to-the-spread-of-covid-19-17702.  

5.     Salary. How Much Does a Residential Supervisor Make in the United States? May 28, 2020. https://www.salary.com/research/salary/benchmark/residential-living-supervisor-salary. 

6.     Reuters. Special Report: Pandemic Exposes Systemic Staffing Problems at U.S. Nursing Homes. June 10, 2020. https://www.reuters.com/article/us-health-coronavirus-nursinghomes-speci/special-report-pandemic-exposes-systemic-staffing-problems-at-u-s-nursing-homes-idUSKBN23H1L9.  

7.     Annals of Long-Term Care. Is Your NH Visitation Policy in Compliance with Federal Law? [blog].  May 9, 2017. https://www.managedhealthcareconnect.com/blog/your-nh-visitation-policy-compliance-federal-law.

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

https://www.managedhealthcareconnect.com/content/reducing-covid-deaths-assisted-living-residences-and-nursing-homes

Personal Blog #18 … Federal Grant Funded to Improve Care for AD/Dementia Patients in Hospital Emergency Departments! ... 9/17/2020

Readers who visit this site may recall reading Personal Blog #13, “Dementia Patients in Hospital Emergency Departments,” posted on 1/18/20.  In that blog I wrote about how patients diagnosed with Alzheimer’s disease (AD) or some other form of dementia are often treated poorly in hospital emergency departments (EDs).

Quoting from that blog, I discussed how I had read about “the American Geriatrics Society’s formation of the Geriatrics Emergency Department Collaborative (GEDC), a consortium of some of our country’s leading health systems and medical societies, to help improve emergency care for our nation’s older adults.”  The GEDC consortium submitted a grant proposal to NIA/NIH in late January of this year.  Their Geriatric Emergency care Applied Research (GEAR 2.0) grant called for establishing a Task Force to suggest ways to improve care for AD/dementia patients in hospital EDs

I was honored when the GERD consortium asked me to serve as their only non-medical Task Force member … as their “expert in patient-centered dementia care in times of emergency.”  If this grant were funded, as a former AD spouse caregiver I would be able to provide a voice for AD/dementia caregivers and their loved ones, able to describe firsthand what it is like for AD/dementia patients and caregivers in hospital EDs.  

In that same blog, I also requested readers to email me and share their own hospital emergency department experiences with their loved ones.  I said that I would like to include their comments and suggestions in my recommendations to the Task Force should the grant be funded.  Several caregivers did email me, and I am thankful for all of comments received.

Now I can update readers on this GEDC grant proposal.  Quoting from an email received earlier this week from one of the project coordinators … “The Geriatric Emergency care Applied Research network 2.0 – Advancing Dementia Care (GEAR 2.0 – ADC) is funded!!!  We received the notice of award from the National Institute on Aging today.”  Continuing to quote from that email, “During the first phase of the grant period (R61), we will establish a stakeholder engagement approach to determine research priorities for ED patients with dementia (PwD) and caregivers using a consensus process in four domains: 1. ED practices 2. ED care transitions 3. Detection, and 4. Communication and decision making.  We will also establish infrastructure and collaborations that include the GEDC, ADRCs, and GEAR 2.0 Cores: 1. Administrative; 2. Research; 3. Data/Informatics; and 4. Dissemination & Implementation.

The second phase of the grant period (R33) will solicit, review, select and fund research that will lead to future full-scale proposals addressing research gaps in emergency care for PwD and their caregivers identified during the first phase. This will create a platform from which GEAR 2.0 ADC and future investigators will generate preliminary data for large-scale funding opportunities, including multicenter project proposals. This “priming” of the research pipeline will promote further transdisciplinary studies and science and lay the groundwork for a sustainable research network infrastructure to support development of an evidence base to optimize the emergency care of persons with dementia.”

This is a very important first step in a new national effort to improve care for people with Alzheimer’s and other forms of dementia in hospital Emergency Departments.  Improved care for people with AD/dementia will also greatly relieve some of the stress and anxiety faced by caregivers, who often have to watch their loved ones receiving suboptimal care by many ED medical professionals who lack either the understanding and/or training to be able to communicate, diagnose and treat AD/dementia patients effectively.  Hopefully, research emerging from this grant proposal will lead to improved practices to enable more doctors to provide optimal care going forward.

I had another article about this same topic, care for those with AD/dementia in hospital EDs, published and posted on this site just a few months ago ... “When to Choose the Infant Approach,” which appeared in Emergency Physicians Monthly in June.  With increasing numbers of people being diagnosed with AD and other forms of dementia, hospital ED visits will continue to increase.  Medical personnel working in hospital Emergency Departments simply must learn how to communicate with, diagnose, and treat patients with AD/dementia more effectively.  As this Task Force’s lone AD/dementia patient advocate, I will now be able to provide a caregiver’s perspective on these important issues.  But I am again asking for your help.

If any current or former AD/dementia caregivers want to offer their recommendations, or simply want to share their hospital experiences with their loved ones, please email me at acvann@optonline.net.  Thank you.

 

When to Choose the Infant Approach

Alzheimer’s and dementia patients might respond better to simpler strategies.

The Geriatric Emergency Department Collaborative (GEDC) (https://gedcollaborative.com/about/) and the Geriatric Emergency Department Accreditation Program (GEDA) (https://www.acep.org/geda/) are two major national efforts to help Emergency Departments provide better care for all geriatric patients, including those with Alzheimer’s disease (AD) and other forms of dementia.

While these initiatives are very positive steps, it will take many years before most hospitals implement GEDC and/or GEDA protocols.

There are two changes in medical practice that can be implemented immediately in most if not all hospital EDs that would greatly improve care for patients with Alzheimer’s or other forms of dementia.  I have given a lot of thought to this recommendation, which is based upon my own years of experience as an AD spouse caregiver, and years of interaction with many other AD caregivers.

My first recommendation is to train all ED clinicians to approach patients in late stages of AD/other forms of dementia as they already approach infant patients.  I probably should have realized that years ago, but it didn’t occur to me until I recently watched a TV program in which a mother brought her infant into a hospital ED.

Physicians appropriately peppered the mother with questions seeking helpful information, knowing that parents can often provide an accurate health history, medications and events around the reason for presentation.  Asking parents for such information is standard medical practice, not just in a TV show, but also in the real world.

Yet this TV scene contrasted sharply with my experiences whenever my wife, in late stages of AD, presented to an ED.  Even though her level of cognition and verbal communication was comparable to that of the child in the aforementioned TV episode, Emergency medicine physicians routinely acted dismissively towards me, even asking me on more than one occasion to “please wait outside” while they examined my wife.

After watching that TV program I am now firmly convinced that we need to train emergency physicians to approach AD/dementia patients as they do infant patients.  A physician would never ask an infant to describe the type of pain he/she is feeling, or to describe exactly where it hurts, or for how long that pain has persisted, or to describe the pain intensity on a scale of 1 to 10.

Yet EM physicians asked my wife these questions when she was in late stages of AD.  They asked questions that my wife could not possibly understand, let alone answer, and were unwilling to let me provide them with helpful information.

EM physicians should know better, especially after my wife couldn’t respond coherently to questions about her name, or date of birth, or where she lives or her location.  Physicians should have realized that asking additional questions about her pain or why she was brought to the ED would be fruitless.  They should have wanted to listen to what I could say to possibly help them diagnose and treat my wife effectively.  But this never happened when my wife was brought into the ED … not even once.

I am not just speaking of my own personal experiences.  As a former member of an AD spouse support group, a former facilitator of two AD spouse support groups for the Alzheimer’s Association, and as the recipient of many emails in response to articles I’ve written about AD, caregivers repeatedly tell me that they felt that EM physicians did not want input from them even while these physicians seemed lost about how to communicate with their loved ones.

Attempts to communicate with late stage AD/dementia patients will be no more successful than attempts to communicate with infants.  EM physicians should seek helpful information from caregivers of their AD/dementia patients in the same way they seek helpful information from parents of infants.

A second step to immediately improve medical care for AD/dementia patients is to require all EDs to have at least one physician and nurse on each shift that has received specific training in techniques to communicate effectively with AD/dementia patients.  This step is especially important for those times when caregivers of these AD/dementia patients are not present.

Granted, implementation of this step would be very costly, and possibly even impossible in some settings, such as in small rural hospitals.  If so, then this staffing recommendation can be viewed as an aspirational goal by those hospital EDs where it just can’t happen.

However, those hospitals can still seek new ways to communicate more effectively with AD/dementia patients.  Just as COVID-19 is now changing the ways some doctors treat patients at home, perhaps ED doctors can use technology to communicate with knowledgeable doctors in other hospital EDs who can advise them how to more effectively communicate with their AD/dementia patients.

Our country’s aging population, with its growing number of people diagnosed with AD and other forms of dementia, suggest increasing numbers of hospital ED visits by AD/dementia patients in coming years.  EDs are scary enough for late stage AD/dementia patients … strange faces, unfamiliar surroundings, bright lights, loud sounds, hard gurneys, painful needles and IV infusions, and all the rest.

We can at least consider new proposals to allow EM physicians and nurses to communicate more effectively with their AD/dementia patients and caregivers.

If these two steps were eventually implemented, care for late stage AD/dementia patients in EDs would improve dramatically.

Even if implementation of that second step will take more time, let’s at least immediately start training doctors to view AD/dementia patients and their caregivers as they already view infants and their parents, while continuing trying to incorporate the broader elements of the GEDC and GEDA initiatives.

ALLAN S. VANN

Dr. Vann is a retired public school principal and a former Alzheimer’s spouse caregiver for 10 years. Dr. Vann writes frequently for publication to try to improve the diagnosis and treatment of people with Alzheimer’s.

Published on June 1, 2020 in Emergency Physician's Monthly.  Access at: https://epmonthly.com/article/when-to-choose-the-infant-approach/