Completing Death Certificates For Patients With Alzheimer Disease

According to the latest available mortality data from the Centers for Disease Control and Prevention (CDC), in 2014 there were 93,541 deaths in the United States due to Alzheimers disease (AD), making AD the 6^th leading cause of death in this country. However, the CDC also acknowledges that this number of reported deaths due to AD is actually much larger.  “Dementia, including Alzheimer’s disease, has been shown to be underreported in death certificates and therefore the proportion of older people who die from Alzheimer’s may be considerably higher.”

Indeed, a study of 2566 people aged 65 and older, funded by the National Institute on Aging (NIA) in 2014, concluded that deaths attributable to AD far exceed the annual numbers reported by the CDC, “notably 5 to 6 times higher. Our figure suggests that AD may be the third leading cause of death after heart disease and cancer.” Citing more than 20 years of previously reported research, authors of this study also found that, whereas death certificates may correctly list the immediate causes of death on death certificates, “dementia is often omitted as an underlying cause. It is well documented that AD and other forms of dementia are underreported on death certificates.”

Omitting AD as a significant factor contributing to the death of their AD patients, even if unable to ascertain that AD was directly related to the immediate cause of death, is a tremendous disservice for two extremely important reasons.  

First, at the risk of stating the obvious, according to the CDC, “Quality of mortality data is largely dependent on proper and thorough completion of death certificates by certifiers.” So if AD is not mentioned anywhere on death certificates, AD will not be considered as a cause of death in the CDC mortality data. Doctors and nurses should understand that if AD was more often reported as a “significant condition” on death certificates, perhaps our National Institutes of Health (NIH) would make AD a higher research funding priority. 

Actual NIH funding for AD was under $600 million for fiscal years (FYs) 2012-2015, and estimated funding for FY 2016 and 2017 was $910 million. Contrast that with NIH funding for the CDC’s top two leading causes of death: heart disease and cancer. Research funding for heart disease/cardiovascular disease/coronary heart disease topped $3 billion in each of those same 6 years, and cancer received more than $5 billion for FY 2012-2015, with estimated spending for 2016 and 2017 at $5.6 billion and $6.3 billion, respectively. And those totals are in addition to separate NIH categorical funding of $600-$800 million for research just in breast cancer, and additional hundreds of millions of dollars in funding for other identified cancers (pancreatic, lung, etc) in each of those same years.

Imagine how much further along we might be in our understanding of the causes of AD and how we might treat it effectively, or possibly even prevent or cure AD, if annual NIH research funding for AD were at the same levels as annual NIH research funding for heart disease and cancer. Just over the last 6 years alone, that would have meant an additional $15-$22 billion more for AD research.

A second reason for why I feel more doctors and nurses should write AD on death certificates is more personal. After a 10-year struggle with early onset AD, my wife passed away in a nursing home (NH) last year, 1 month before her 70th birthday. When I received a copy of her death certificate, “Alzheimer disease” did not appear anywhere on that form. “Cardiopulmonary arrest” was listed as the immediate cause of death in Section 30, Part I. Section 30, Part II it reads: “Other significant conditions leading to death but not related to cause listed in part I” ... was left blank. That stunned me…and angered me. 

CDC issues “Instructions for Completing the Cause-of-Death Section of the Death Certificate.” Those instructions indicate that “Part II is for reporting all other significant diseases, conditions, or injuries that contributed to death but which did not result in the underlying cause of death given in Part I.”

When I called my wife’s NH doctor to ask why AD was not listed in Part II of her death certificate, he explained that he could not be sure that AD played any role in her death due to her heart history. While I could certainly respect his position, I noted that even with her 15 years of dealing with heart issues before her AD diagnosis, if my wife didn’t have AD, she would have lived a much healthier life style during her last 10 years. For example, she would have continued to exercise daily, eat nutritiously, sleep well, and enjoy a relatively anxiety-free life style—a lifestyle she was no longer able to maintain as her AD worsened.

I also reminded the doctor that 4 months earlier, my wife’s increased anxiety and aggressive behavior caused her to be placed in a psychiatric hospital for 21 days. Since then, she had been taking powerful antipsychotic medication. Heavy-duty atypical antipsychotics come with warnings of complications when taken by people with AD because, as one study reported, “atypical psychotics doubled the risk of sudden death from heart-related causes, most likely by causing disturbances in heart rhythms.” But, after listening to all I had to say, the doctor still did not see any valid reason for adding AD to Part II of the death certificate as a significant factor contributing to her death. We simply agreed to disagree.

When my wife was initially diagnosed with AD, she agreed to donate her brain for research so her death might, in some small way, contribute to an eventual discovery of a cause, or effective treatment, or means of prevention or cure for AD. (Her brain autopsy, in fact, revealed that “the level of amyloid plaque and the tau neurofibrillary tangle pathology can be classified as moderate to severe for the relatively young age of Mrs. Vann.”)  Again, indicating AD as a significant condition would have added to mortality statistics that may possibly lead to increased NIH funding for AD research in the future. This would have been another way in which my wife’s death may have contributed to a better future for others.

The medical profession has years of research supporting the conclusion that AD “contributes to death insidiously over the course of years through a cascade of events.” So the question to ask, it seems to me, is how can doctors and nurses not list AD as a significant condition on death certificates for AD patients?

I think that the 2014 NIA study had it right: “Multiple factors may contribute to death in the elderly, some proximate and some distal. The elimination of any one of them may allow the individual to live longer.”

Until I read convincing research to the contrary, I will continue to support the conclusion of that NIA study that the elimination of AD may have allowed an individual to live longer. In my opinion, this is reason enough for AD to be listed in Part II of death certificates as a significant condition contributing to death, even if not related to the immediate cause of death.

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 Dr Vann writes a monthly Commentary blog column for the Annals of Long-Term Care journal, which is one of the brands housed on the Managed Health Care Connect website. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read more than 90 of his other articles about Alzheimer's at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net.

Published in Annals of Long-Term Care, online only, on November 29, 2017.  Access commentary at: https://www.managedhealthcareconnect.com/blog/completing-death-certificates-patients-alzheimer-disease

Personal Blog #5 ... Tips for Caregivers: Presentation at L.I. Alzheimer’s Association Conference, November 17, 2017

Good afternoon!  Regardless of where you are in the caregiving process, I hope that something I’ll say today will be helpful to you.

I was asked to address a two-part question: What was it like to be in my shoes as an Alzheimer’s caregiver, and given that experience, what recommendations do I have for other Alzheimer’s caregivers. 

First, a little background:  I’ll be 71 years old next month.  My late wife, Clare, and I had what we often described as a fairy tale marriage.  Clare died 19 months ago, one month shy of her 70^th birthday, and 2 months shy of our 49^th anniversary.  She battled Alzheimer’s disease for nearly 10 years.  I was her 24/7 caregiver at home and then served as her part-time caregiver when she was in assisted living, a psychiatric hospital, a regular hospital, and finally in a nursing home.  I started writing for publication out of frustration while watching Clare being misdiagnosed, in my opinion, for nearly 3 years.  She was treated first for stress, then anxiety, and then for depression when I was already convinced that, even though only 60 years old, she was already in the early stages of young onset Alzheimer’s. 

So, what was my experience like as an Alzheimer’s caregiver?  It was probably very similar to many of your experiences.  My life was one of non-stop daily stress, with much sadness and anxiety, often accompanied by periods of mild and/or serious depression, along with intense feelings of doubt, guilt, frustration, and many other emotions.  Similar strong emotions often result in many caregivers taking anti-anxiety or anti-depressant medication, sleeping pills, meeting regularly with therapists, or experiencing dramatic weight gain or loss.  In my case, stress drove me to my comfort foods.  I gained nearly 100 pounds during those 10 years, and it’s only been in the last year that I’ve been able to start taking off some of that weight.  I also developed eczema on my face.

As many of you already know, helping a loved one with Alzheimer’s just with the activities of daily living ... basic hygiene, dressing, eating, 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.  When Clare was placed in an assisted living facility, or admitted to hospitals after various falls, or had to spend 3 weeks in a psychiatric hospital when the assisted living facility could no longer handle her ... and then, finally, when she was placed in a nursing home ... I still served as her sole caregiver for several hours each day.

But caregiving was then no longer my primary role ... my role had morphed from primary caregiver to primary care advocate, making sure that she was being treated properly each day.  But that new role was also incredibly stressful.  Even though Clare was in excellent facilities, many staff members were not sufficiently motivated, educated, or trained to consistently provide proper care, and that led to many meetings with administrative staff.

There is also 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.  Again, as I’m sure many of you already know, for someone with Alzheimer’s here on Long Island, assisted living facilities can easily run between $7-$10,000 per month ... or more ... and nursing homes will charge about $15-$18,000 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 you’ll need as the surviving caregiver. 

Once Clare entered assisted living, I suddenly had to deal with daily loneliness and enormous life style changes.  Going to sleep all alone in bed those first few nights after placement was painful and lonely beyond words, and living alone for the first time after so many years of marriage brought incredible sadness.  I felt that I needed to be with Clare 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 Clare 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 Clare 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 I loved her, and she’d say to me, “I love you too ... but can you please help me find my husband?”  It is no surprise to me that studies consistently find that caregiver stress is a significant factor contributing to caregiver mortality. 

One person in my 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 Clare’s death to hit me as hard as it did.  But I was very wrong.  Her death hit me very hard.  But, fortunately, last month I was able to post a personal blog on my website titled, “Finally Moving On With the Rest of My Life.”  I still miss Clare every single day, but that persistent daily depression and horrible gut-wrenching pain and anguish is now gone.  I know that there will still be times of immense sadness, along with many tears, but at least I have finally climbed out of my black hole.

That’s an overview of how life was for me as a caregiver.  With respect to tips for fellow caregivers, I’d like to offer some revised excerpts of another one of my articles, “5 Steps for Alzheimer’s Caregivers.”

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Once a loved one receives an AD diagnosis, there are five actions that caregivers and their loved ones should take as soon as possible.  

1. 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.  Discuss long-term health care options.  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 to be moved solely to your name.

2. 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, and discuss plans for how you will pay for long-term care.  

3. Discuss long-term care options.   What will you do if no longer able to care for your loved one at home?  Does your loved one prefer to stay at home for as long as possible, or prefer to be in an assisted living facility or nursing home?  What do you prefer?  If not discussed previously, now is the time to have these discussions to insure your loved one's input and allow some lead time to visit facilities if your loved one will not be remaining at home.

4. Educate yourself at responsible websites.  Major hospitals such as Mayo Clinic and Johns Hopkins, and organizations such as the Alzheimer's Association, have websites with 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.

5. Join a support group.  Try to find a support group that meets solely for caregivers in your position ... for example, just for spouses, or just for children.  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 weekly, but a group meeting bi-weekly or monthly is better than no group at all.  Good support groups can provide many helpful suggestions and emotional support from fellow caregivers who "get it.”  

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If I wrote that same article today, however, I would add 2 more actions that caregivers should take: 

Number 6.  Check out websites maintained by other caregivers.  One or more may provide you with helpful support and guidance.  I don’t promote my personal website with advertising, but caregivers still find me because but my site gets more than 1000 visitors every month.  Many caregivers read my articles there, not in the journals, magazines, or newspapers I write for, and email me with comments and questions. 

Number 7.  If you have planned to take any trips with your loved one a year from now, don’t wait that long.  Take those trips now or in the next few months because your loved one may not be able to travel a year or even 6 months from now.

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Caregivers who act quickly on the recommendations I’ve offered today will be in better shape to cope with what lies ahead.  So wherever you are on that caregiving continuum, if you haven’t already done so, please meet with an eldercare attorney and financial advisor, discuss long-term care options with your loved one, educate yourself about the stages of AD, join a good support group, check out some websites maintained by other AD caregivers, and take whatever trips you had planned to take with your loved one sooner rather than later.

This concludes my prepared remarks, but I am happy to answer any questions you may have. Hang in there, please.  Thank you.

Treating an Alzheimer’s patient? 6 tips from a patient’s spouse

This article is based on a presentation the author made
to medical students at the Donald and Barbara Zucker
School of Medicine at Hofstra Northwell, Hempstead, NY, on
February 14, 2017.

The author’s wife struggled with Alzheimer’s disease for 10 years. The insights he provides here are drawn from his experience—and the literature.

What’s it like to be the caregiver for an Alzheimer’s patient? In my case, it was like being both married and widowed at the same time. Or as a person in my support group once put it: It’s
a life filled with grief on the installment plan. My wife, Clare, struggled for nearly 10 years with Alzheimer’s disease before
passing away in April 2016—just one month shy of her 70th birthday and 2 months shy of our 49th wedding anniversary.
Our experience was gut-wrenching,but not unique for families coping with Alzheimer’s disease. Life as a caregiver is one of non-stop daily stress, with much sadness and anxiety, often accompanied by periods of mild or serious depression. Doubt, guilt, frustration, and many other emotions lead many caregivers to take anti-anxiety or anti-depressant medication, meet regularly with therapists, take sleeping pills, or experience
significant weight gain or loss. Stress drove me to my comfort foods, and I gained nearly 100 pounds while caring for Clare. Only in the last few months have I been able to start taking off that weight.

Helping a loved one who has Alzheimer’s with even the basic activities of daily living— hygiene, dressing, eating—becomes progressively difficult. Caring for a loved one who is confused, no longer remembers your name or who you are, or can occasionally become aggressive, is emotionally painful.

After being Clare’s 24/7 caregiver for 6 years, I agreed that placement in an assisted living facility was in her best interest. My role morphed from primary caregiver to primary care advocate, but the stress did not lessen.  I met regularly with facility staff to ensure proper care because many staff members
were not sufficiently motivated, educated, or trained to consistently provide proper care for individuals with Alzheimer’s disease.

Financial stress weighs heavily on 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 Alzheimer’s in a community such as Long Island, NY, assisted living facilities charge between $7000 and $10,000 per month, and nursing homes between $15,000 and $18,000 per month. Home health aides working 24/7 also cost around $15,000 per month. Caregiving costs can drain not just the patient’s bank account, but can wipe out the retirement life savings of the surviving caregiver.

Once Clare went into assisted living, I dealt with the daily loneliness and the enormous lifestyle changes. Being alone in my bed those first few nights after placement was painful beyond words, and learning to live alone for the first time after many years of marriage brought incredible sadness. It is no
surprise to me that research points to caregiver stress as an independent risk factor for elderly caregiver mortality. 1.

My experience navigating the health care system with my wife included numerous challenges and instances of unnecessary
frustration. My hope in providing the following suggestions is that they will help you help other families like mine.

1. Listen carefully to caregivers
When Clare first exhibited symptoms suggestive of Alzheimer’s, I started logging them and presented written summaries to doctors at each visit. But unless Clare exhibited those same symptoms in the presence of her doctors, my observations were routinely ignored. I’d try to discuss concerns—eg, Clare getting
lost while driving to familiar locations, experiencing increased aphasia—but the doctors didn’t read my logs or listen carefully to what I was trying to tell them. The January/February 2017 AARP Bulletin 2. noted studies showing that doctors listen for about 23 seconds before interrupting patients, but it also
cited a 2001 South Carolina study 3. that found patients spoke, uninterrupted, for an average of 12 seconds before being interrupted by a resident.

I eventually did learn that early Alzheimer’s symptoms can be easily misinterpreted as signs of stress, anxiety, or depression. But that underscores the need for doctors to listen carefully to caregivers, especially spouse caregivers who observe behaviors 24/7 that may not be present in a quick office visit or revealed on a brief cognitive screening test.

2. Stay up to date on screening tools that detect Alzheimer’s
The Mini-Mental State Examination, or MMSE, is the most frequently used cognitive screening tool, in part because it can be administered in less than 10 minutes. Although unquestionably valuable, a Cochrane review “did not find evidence supporting a substantial role of MMSE as a stand-alone single administration test in the identification of MCI [mild-cognitive impairment] patients who could develop dementia.” 4.

Time-pressured doctors might consider using the AD8 screening interview, an informant questionnaire that takes only 2 to
3 minutes to administer, but has demonstrated superior sensitivity in detecting early dementia compared with the MMSE. 5. In addition, a study in the December 2016 issue of
the Journal of Alzheimer’s Disease 6. confirmed the usefulness of the Sniffin’ Sticks Odor IdentificationTest whereby patients try to identify 16 different odors. I can attest to Clare’s rapidly
deteriorating senses of taste and smell as her disease progressed.

“Results suggest that a simple odor identification
test can be a useful supplementary tool for clinically categorizing MCI and Alzheimer’s, and even for identifying people who are at the highest risk of worsening,” according to principal investigator, David R. Roalf, PhD. 7.

Prompted by prior studies that have linked a weakening sense of smell to Alzheimer’s, doctors in a few larger dementia clinics have already begun using smell tests in their assessments. One possible reason the practice has not yet become common, however, is that the tests take about 5 to 8 minutes to administer. Roalf and his colleagues are hoping to develop a shorter test that will work as well as the longer ones. “We’re hoping to shorten the Sniffin’ Sticks test … down to 3 minutes or so … We think that will encourage more neurology clinics to do this type of screening.” 7.

Is 5 minutes too much time to take to administer
a valuable screening test?

3. Be candid when speaking with patients and their caregivers
A survey reported in Time magazine on March 24, 2015, found that as many as 64% of doctors do not share a diagnosis of Alzheimer’s with their patients because of “fear of causing
emotional distress in their patients” due to a lack of effective treatment or cure, and because of a “lack of time and resources to fully explain what the diagnosis means.” 8.

But Alzheimer’s patients and their caregivers need as much time as possible to plan accordingly, especially if they have not already discussed and finalized end-of-life planning (will, living will, health care proxy, durable power of attorney), preferences for staying at home with aides or being placed in a facility, or wishes to take final trips or enjoy final activities together before cognitive impairment worsens. Withholding a diagnosis
can rob patients and caregivers of that valuable planning time.

4. Connect caregivers to resources and support groups
Information on the stages of the disease, available local support groups, and online resources are extremely helpful. Of the 15 people in my spouse support group, only one or 2 were referred
there by a doctor. Become familiar with local support groups because that is where caregivers discuss common needs, learn and share helpful caregiving strategies and techniques, and find emotional support from others walking in similar shoes.

5. Help caregivers take away the car keys
When to take away the car keys is an extremely difficult emotional decision that often leads to heated arguments. People with Alzheimer’s rightfully fear losing their independence and only reluctantly accept they can no longer drive safely. But their caregivers worry about them getting lost or causing an accident or, worse, a death. Even though some people with Alzheimer’s can continue to drive safely for a while, the ever-worsening cognitive decline with the disease sooner or later leads to impaired judgment and the inability to drive safely. If caregivers have already observed issues with their loved one’s driving ability and ask you to intervene, please help remove a major
cause of caregiver stress while also making our roads safer. And please do not routinely refer people with Alzheimer’s to driving test facilities. A person with Alzheimer’s may do very well at the particular moment of the test, yet might fail that same test if it was given an hour earlier or later.

6. Manage expectations of what medications can do
None of the current FDA-approved medications have proven to have any long-term positive effects on Alzheimer’s. Clinical trial data show that these meds may be able to slow the rate of disease progression for some people who take them, but even then the benefit is short-lived. Yet many doctors, year after year, renew these “expensive bottles of hope,” as I call them, when the thousands of dollars needed to buy them could be much better spent on day-care programs or personal aides. A candid disclosure to patients and caregivers would enable better decision-making.

References
1. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999;282:2215-2219.

2. Patural A. How to talk so your doctor will listen. AARP Bulletin. January/February 2017. Available at: http://www.aarp.org/health/healthy-living/info-2016/talk-to-doctor-patient-relationship.html. Accessed September 25, 2017.

3. Rhoades DR, McFarland KF, Finch WH, et al. Speaking and interruptions during primary care office visits. Fam Med. 2001;33:528-532.

4. Arevalo-Rodriguez I, Smailagic N, Roque I Figuls M, et al.
Mini-Mental State Examination (MMSE) for the detection of
Alzheimer’s disease and other dementias in people with mild
cognitive impairment (MCI). Cochrane Database Syst Rev.
2015;(3):CD010783.

5. Galvin JE, Fagan AM, Holtzman DM, et al. Relationship of dementia screening tests with biomarkers of Alzheimer's disease. Brain. 2010;133:3290-3300.

6. Quarmley M, Moberg PJ, Mechanic-Hamilton D, et al. Odor identification screening improves diagnostic classification in incipient Alzheimer’s disease. J Alzheimers Dis. 2017;55:1497-1507.

7. Penn study confirms that “sniff test” may be useful in diagnosing early Alzheimer’s disease. December 21, 2016. Available at: http:// www.j-alz.com/content/penn-study-confirms-%E2%80%9Csnifftest% E2%80%9D-may-be-useful-diagnosing-earlyalzheimer% E2%80%99s-disease. Accessed October 12, 2017.

8. Park A. Many doctors don’t tell patients they have Alzheimer’s. Time. March 24, 2015. Available at: http://time.com/3755176/doctors-diagnose-alzheimers-dont-tell/. Accessed September 25, 2017.

The Journal of Family Practice, November, 2017, Vol. 66, No. 11, pp. 676.678.

Personal Blog #4 ... Finally Moving On With the Rest of My Life ... 10-19-17

After nearly eighteen months of grieving over the death of my beloved wife, Clare, I am finally able to move on to enjoy the remaining years of my life. Psychologists usually describe grieving the loss of a loved one as a process with five stages ... denial, anger, bargaining, depression, and acceptance.  Some psychologists describe seven stages, differentiating pain/guilt from anger and differentiating “turning the corner” from acceptance.  All psychologists agree, however, that some individuals move back and forth between stages, and some individuals linger longer in one or more stages.  

I spent most of the past eighteen months going back and forth between pain/guilt and depression.  Even after reaching the “final” stage of acceptance, I continued to suffer from some lingering mild depression.  Perhaps that is because I had been anxious and mildly depressed for many years while Clare was still alive.  Many Alzheimer’s disease (AD) spouses experience “anticipatory grief” because there are no AD survivors.  An AD diagnosis is quite literally a death sentence.

Until recently, I would often burst into tears and cry out with gut-wrenching pain whenever something triggered memories of activities Clare and I had enjoyed together.  I’d also often loop back into that pain/guilt phase, second-guessing decisions made years ago.  Although I was enjoying time with family and friends, along with participating in some activities, I just could not see a future filled with much happiness.  But conversations with other widows, focused personal reflection, and a very special writing project ended my pain/guilt and depression about six weeks ago, enabling me to finally move forward, mentally and emotionally. 

I had brief discussions with several AD widows who had lost their spouses several years ago and asked how long it took them to get past their grief.  They all said that whereas time helps, they still feel sad and occasionally depressed.  One widow tearfully expressed how difficult the holidays, birthdays, and anniversaries are for her, even though it’s been eight years since she lost her husband.

Hearing this actually made me feel a little better and more “normal,” just knowing that I wasn’t the only one who still felt sad and depressed after “only” sixteen months.  Many well-meaning people had been telling me that I needed to “get on with my life,” but they didn’t understand that I was still “stuck” in those difficult pain/guilt/depression phases of grief.  I spent a lot of time reflecting upon what those widows told me, focusing on how I could improve my own situation.

 

At around this same time, I was given a challenge by my son.  He does not read my AD articles, finding them too painful, but he suggested a writing project that he would eagerly look forward to reading ... my memoir.  He suggested that I write about my earliest childhood recollections ... games and toys I played with, my house and neighborhood, what my life was like growing up, etc.  Not only did my son say he’d enjoy reading this, but he also thought my grandchildren would want to read it.

I thought he was crazy, but as I started recalling and then writing about memories dating back to my pre-school years, I started having so much fun that I literally was losing sleep.  I’d wake up thinking about how I forgot to write about this or that in my latest chapter!  Sharing some of my early memories with my sister and friends led to more recollections, which I then wrote about in my growing memoir. 

Those conversations with widows, my focused self-reflection, and writing my memoir became a proverbial “perfect storm” that brought me out of that black hole I could not climb out of for so long.  I am now able to look at pictures of Clare, or think about things we did together, and smile instead of cry.  And, for the first time since Clare died, I am hopeful for the future.  I’m even ready to meet “a special someone.”  I’m not looking for “another Clare” ... that would be an impossible task.  But it would be wonderful to find a special woman who could bring additional happiness into my life. 

However, even if I never find that special woman, that’s okay.  My gym workouts and my bowling leagues are already more enjoyable, and I’m experiencing happiness again with the simple daily routines of life.  For the first time in more years than I care to admit, I am also now looking forward to enjoying new experiences.  After eighteen months of grieving, I am now looking forward to a happier future.  I plan to continue “talking” to Clare every day, and know that I will miss her for as long as I live.  But I am also now able to think and talk about Clare without feeling mental anguish.  That deep pain in my gut, present for so long, is now gone. 

Clare had written a letter to me dated four years before she died when she obviously realized that she was losing her cognitive abilities.  But I only discovered this letter after her death.  She wrote about how happy her life had been with me ... and her strong wish for me to do everything I could to find happiness in my life after she was gone.  It took me much longer than I had expected, but I am now trying to fulfill Clare’s final wish for me.  I am looking to find that happiness.

I expect some sadness will always remain within me, and I also expect some tears at times.  But I will no longer experience life with gut-wrenching feelings of pain/guilt and lingering depression due to losing Clare to AD.  No more.  I am now finally moving on with the rest of my life. 

Personal Blog #3 ... "Living With Alzheimer's" Conference

“What is it like to be in an Alzheimer’s caregiver’s shoes and, given that experience, what advice do I have for students about to enter the medical profession.”

I was invited to make a presentation to 2^nd year medical students at the "Living With Alzheimer's Conference" Northwell School of Medicine at Hofstra University on 2/14/17.  Since I didn’t post Personal Blogs on my website at that time, I never posted a copy of that address anywhere.  So, below is a slightly edited copy of my remarks made at that conference:

Good morning ... it’s a pleasure to be here today.  Let me begin with some brief background.  My wife, Clare, died 10 months ago, one month shy of her 70^th birthday, and 2 months shy of our 49^th anniversary.  She battled Alzheimer’s disease for nearly 10 years.  I was her 24/7 caregiver at home for 6 years and then was Clare’s part-time caregiver when she was in assisted living, a psychiatric hospital, regular hospital, and nursing home.  I started writing for publication out of frustration while watching Clare being treated first for stress, then anxiety, and then depression when I was pretty sure that she was already in early stage Alzheimer’s.  I wrote to try to effect change in how doctors diagnose and treat people with Alzheimer’s, and their caregivers, and also to help other caregivers.  To date I’ve had 46 articles about Alzheimer’s published in medical journals, caregiver magazines, and major newspapers, and 35 Alzheimer’s columns published in The Huffington Post. 

I was asked to address two questions with you today:  What is it like to be in an Alzheimer’s caregiver’s shoes and, given that experience, what advice do I have for students about to enter the medical profession.  Here goes: 

What is it like to be in an Alzheimer’s caregiver’s shoes?  The answer is both simple and complex.  The simple answer is that life as a caregiver is one of non-stop daily stress, with much sadness and anxiety, often accompanied by periods of mild and/or serious depression.  Feelings of doubt, guilt, frustration, and many other emotions result in many caregivers taking anti-anxiety or anti-depressant medication, meeting regularly with therapists, taking sleeping pills, or experiencing weight gain or loss.  Stress drove me to my comfort foods and I gained nearly 100 pounds during the past 10 years and it’s only in the last 6 months that I’ve been able to start taking off that weight.

Helping a loved one with Alzheimer’s just with activities of daily living ... basic hygiene, dressing, eating, etc. ... becomes progressively difficult.  Caring for a loved one who is confused, no longer remembers your name or who you are, or can occasionally become aggressive, is emotionally painful.  When Clare was in a facility my role morphed from primary caregiver to primary care advocate.  But meeting regularly with staff to insure proper care was also very stressful because many staff members were not sufficiently motivated, educated, or trained to consistently provide proper care for those with Alzheimer’s.  

And then there is the financial stress faced by most caregivers.  Unless one qualifies for Medicaid, is very wealthy, or lucky enough to have goldenlong term health care insurance and prescription drug coverage, caregiving costs can be astronomical.  For someone with Alzheimer’s here on Long Island, assisted living facilities run around $7-$10,000 per month and nursing homes about $15-$18000 per month.  24/7 home health aides ... about $15,000 per month.  Caregiving costs can drain not just the patient’s bank account, but can also wipe out the entire retirement life savings of the surviving caregiver. 

And once Clare went into assisted living I had to deal with the daily loneliness, and the enormous life style changes.  Going to sleep all alone in bed those first few nights after placement was painful beyond words, and learning to live alone for the first time after many years of marriage brought incredible sadness.  I often referred to myself as being both married and widowed at the same time.  One person in my support group referred to those last 3 or 4 years as grief on the installment plan.  It is no surprise to me that research reports caregiver stress as a significant factor contributing to caregiver mortality. 

So ... that’s an overview of how it felt to be in my shoes.  As for the second question, advice for students about to enter the medical profession, I would suggest the following:

1.  Listen very carefully to caregivers.

When Clare first demonstrated possible Alzheimer’s symptoms, I started logging them and presented written summaries to doctors at each visit.  But unless Clare exhibited those same symptoms in the presence of her doctors, my observations were routinely ignored.  I’d try to discuss concerns ... e.g., Clare getting lost while driving to familiar locations, experiencing aphasia or agnosia, whatever ... but for 2 years neither her primary care physician, neurologist, nor cognitive psychologist took the time to listen to what I wanted to tell them or to read my logs.  Page 28 of last month’s AARP Bulletin noted studies showing that doctors only listen for 23 seconds before interrupting patients, but then cited a recent South Carolina study that doctors listened to patients for only 12 seconds before cutting them off.  12 seconds ... how sad is that??

I eventually did learn that early Alzheimer’s symptoms can be easily misinterpreted as signs of stress, anxiety, and/or depression.  But that just makes it even more important for doctors to listen to caregivers who observe behaviors 24/7 that may not be present in a quick office visit or demonstrated on a brief cognitive screening test.  So ... please listen very carefully to caregivers!

2. Use effective screening tools to try to diagnose possible Alzheimer’s.

The Mini-Mental State Examination, or MMSE, continues to be the most frequently used cognitive screening test, even though it was never designed to screen for Alzheimer’s.  But doctors use this test because it can be administered in 3 minutes.  Please, when you start your practice, learn about other more modern brief screening tests that are more effective.  A study just published in the December issue of Journal of Alzheimer's Disease confirmed the effectiveness of the “Sniffin' Sticks Odor Identification Test” where subjects try to identify 16 different odors.... and I can attest to Clare’s rapidly changing sense of taste and smell.  Anyway, to quote from their study: "Results suggest that a simple odor identification test can be a useful supplementary tool for clinically categorizing MCI and Alzheimer's.  Prompted by prior studies that have linked a weakening sense of smell to Alzheimer's, doctors in a few larger dementia clinics have already begun using smell tests in their assessments.  Part of the reason the practice has not yet become common, however, is that the tests take too long to administer.  We're hoping to shorten the Sniffin' Sticks test, which normally takes 5 to 8 minutes, down to 3 minutes or so -- we think that will encourage more neurology clinics to do this type of screening.”  Is this not another sad commentary?

There’s also another very valuable screening test that definitely takes only 2- 3 minutes to administer and is also more effective than the MMSE ... the “AD-8 Screening Interview,” which was developed by researchers at Washington University in St. Louis. The AD-8 consists of 8 questions given to family/friends of individuals being screened.  When compared to results of the MMSE, the AD-8 "was superior to conventional testing in its ability to detect early signs of dementia.  It (AD-8) can't tell us whether the dementia is caused by Alzheimer's or other disorders, but it lets us know when there's a need for more extensive evaluation to answer that question."   Please ... do not use the MMSE to screen your patients for possible AD!

3. Please be honest when speaking with Alzheimer’s patients and their caregivers.

A survey reported in Time Magazine on March 24, 2015 found that as many as 66% of doctors do not share an AD diagnosis with their patients because of "fear of causing emotional distress in their patients" due to lack of effective treatment or cure, and "lack of time and resources to fully explain the diagnosis."  But Alzheimer’s patients and their caregivers need as much time as possible to plan accordingly ... to possibly enjoy some final trips or activities, and to discuss end-of-life planning decisions and documents ... will, living will, health care proxy, durable power of attorney ... and time to discuss future plans for care before cognitive impairment prevents such discussions.  So, please, don’t withhold a diagnosis!

4. Provide a brief handout to Alzheimer’s caregivers at or shortly after diagnosis.

Information on the stages of the disease, local support groups, and some informative online sources would be extremely helpful.  Of the 15 people in my LIAF support group, only one was referred there by a doctor.  How sad is that?  Doctors need to be more aware of local support groups because that is where

caregivers can discuss common needs, learn and share helpful caregiving strategies and techniques, and find emotional support from others walking in similar shoes. 

5.  Please tell Alzheimer’s patients not to drive.

When to take away the car keys is an extremely difficult emotional decision that often leads to very strong heated arguments.  People with Alzheimer’s rightfully fear losing their independence and accepting that they no longer can drive safely.  But their caregivers worry about them getting lost, causing an accident or, worse, causing a death.  Even if some people with Alzheimer’s can continue to drive safely for a while, an Alzheimer’s diagnosis, by definition, means cognitive impairment that will worsen over time and, sooner or later, impaired judgment and inability to process information can easily lead to an accident.  So if caregivers have observed their loved one having driving issues and ask you to tell their loved ones not to drive anymore, please help remove a major cause of caregiver stress while also making our roads safer.  And please don’t refer people with Alzheimer’s to driving test facilities because a person with Alzheimer’s may do very well at the particular moment of the test but not an hour before or after that test.

6. Educate yourselves about Alzheimer’s meds before prescribing them.

You will eventually learn that none of the currently FDA-approved meds have proven to have any long term positive effects.  Clinical trial data show that they MAY be able to delay disease progression ... BUT only for up to 6 months to a year ... AND only for about half the people who take them.  Yet many doctors keep renewing these expensive prescriptions year after year to give their patients hope.  I’ve written about these meds as “expensive bottles of hope” because these thousands of dollars spent on totally ineffective meds could be much better spent on day care programs, personal aides, etc.  Before initially prescribing or renewing Alzheimer’s medication, please read the clinical trial data research!

7.  If you plan to work in a hospital, especially in the Emergency Department.

If the caregiver is present, please direct your questions to the caregiver and not to the patient.  Examine and treat Alzheimer’s patients as if they were non-verbal.  If not given information on why the patient was admitted and where the pain is, place your hands gently on the patient’s chest, back, stomach, etc. and press lightly.  Trust me, when touching a sore spot the patient will let you know where it hurts.  But asking them for reliable information is almost always fruitless.

More importantly, doctors must understand how upsetting it is for an Alzheimer’s patient to be in the ER ... an unfamiliar setting, forced to be undressed and have their Depends removed to put on hospital diapers and paper gown, placed on a hard surface gurney, seeing all those bright overhead lights, hearing all those strange machine sounds, having strangers poking them here and there while painful needles are placed in their arms. Also, many Alzheimer’s patients “sundown” as the day goes on, becoming increasingly confused, much more anxious, and some even very aggressive.  Withholding a patient’s medication and food until testing is completed may be sound medical practice, but withholding anxiety medication and food for up to 9 hours, as happened twice with Clare, is almost akin to medical malpractice.  Clare was screaming louder and louder, ripping IVs out of her arm, constantly trying to get up, refusing to use a bed pan and soiling her clothing as we waited and waited for her to either be admitted or discharged so she could be given meds and food!  Doctors must consider Alzheimer’s patients as high triage priorities in the ER!

In my opinion, there is a lot that doctors can do to improve the ways they diagnose people who may have with Alzheimer’s, and how they treat Alzheimer’s patients and caregivers.  I appreciate this opportunity to share my personal views with you this morning and look forward to answering any questions you may have. 

Thank you ... and good luck with your future careers!

Discussing Brain Donation With Dementia Residents

Although the topic of organ donation, brain donation specifically, is not the most appealing topic to bring up to patients or families of patients with Alzheimer disease (AD) and dementia, having this conversation is important nonetheless, especially as the number of older adults living longer with AD grows.  

The Harvard Brain Tissue Resource Center at McLean Hospital near Boston, MA, is one of the largest brain banks in the world. Their focus is on research to learn more about diseases using brain tissue. CNN interviewed researchers at that facility and reported the following: “According to Dr Kerry Ressler, the chief scientific officer at McLean Hospital, new treatments for many mental and neurological diseases are within the grasp of the research community. However, he says, it is the lack of brain tissue that is holding back their development. Scientists at McLean Hospital and at brain banks across the world do not have enough specimens for the research community.”

Perhaps due to the sensitivity of the topic, many long-term care facilities (LTCFs) may not have protocols in place for how to educate residents and families on donation. Thankfully, I had a positive experience in relation to this topic, but others have had less helpful experiences.  

My late wife, Clare, was diagnosed with AD at a major New York City hospital, the Mount Sinai School of Medicine (MSSM). MSSM is an Alzheimer’s Disease Research Center (ADRC), one of 33 ADRCs in the United States receiving special funding from the National Institutes of Health in order to “translate research advances into improved diagnosis and care for people with Alzheimer’s disease while focusing on the program’s long-term goal—finding a way to cure and possibly prevent Alzheimer’s.”

Over the course of Clare’s many visits to MSSM for periodic testing and evaluation, and to monitor her participation in a clinical trial, doctors periodically discussed MSSM’s brain tissue donation program with us. MSSM’s website describes its brain tissue donation program as follows: “The Alzheimer’s Disease Research Center (ADRC) is committed to fighting Alzheimer’s disease and other neurodegenerative diseases by understanding causes, identifying genetic components, developing new treatments, and seeking a cure. One critical part of this fight is what we learn from brain tissue donation research.”

During our discussions, doctors reviewed additional information about brain donation; we were told: “Examining the brain after death is the only way to obtain a definitive diagnosis of AD or other dementias. The more often we can confirm (or refute) the diagnosis, the better able physicians will be to accurately identify the disease in living patients. Results from brain donation research have led to important advances in current treatments for AD. And the only way to obtain the brain tissue necessary for both diagnostic and research purposes is through donations.”

We were also given papers to review about Clare’s possible participation in a national AD brain donor program. After several discussions, Clare and I agreed upon the importance of contributing to future research that may help others dealing with AD, so she signed (and I co-signed) a form giving permission for her brain to be donated post-mortem for scientific research. And, upon my wife’s death, that was done.

Because of the coordination and support that MSSM had in place regarding brain tissue donation education, Clare and I were able to make an informed decision that will hopefully lead to new advances in AD research. Although Clare had to go through the experience of living with AD, at least we could take this practical step in perhaps helping others in the future.

Unfortunately, many AD family caregivers report that their doctors never discussed the possibility or importance of brain tissue donation with them or their loved ones. And if the matter is ever brought up, it may not always be discussed properly. One member of my former AD spouse support group recently told me what happened when she brought up brain donation with her husband’s neurologist:

“The doctor’s reaction was tepid, and the recommendations and instructions were vague, unsupportive, and complicated. At that time, I didn’t need complicated. I just needed the information. I was made to feel like I was offering to donate an old sofa, instead of a brain that might have something valuable to offer to those doing research on neurological diseases.”

This woman had wanted to do her part to further AD research, yet she was met with indifference and a lack of compassion, despite the need for brain tissue donations.

It may be helpful to make information on brain donation part of the intake procedure for all AD residents and/or patients in LTCFs. Caregivers could be asked if they have made brain tissue donation provisions for their loved ones. If yes, then that information should be recorded for the future, and the caregiver should be told to bring in a copy of the signed brain tissue donation form for their records. If not, LTC personnel could provide brain tissue donation information and facilitate the donation process for caregivers if asked to do so.

Brain tissue donation is one practical way to allow researchers to learn more about AD that may one day result in new knowledge leading to an effective means of prevention, treatment, or cure.

It would not take much time or effort for a LTC administrator, social worker, physician, or nurse to be responsible for coordinating such an effort in every LTC setting.

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Dr Vann writes a monthly Commentary blog column for the Annals of Long-Term Care journal, which is one of the brands housed on the Managed Health Care Connect website. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read more than 90 of his other articles about Alzheimer's at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net.

Published in Annals of Long-Term Care, September 12, 2017.  Access online only at 
http://www.managedhealthcareconnect.com/blog/discussing-brain-donation-dementia-residents

Coordinating Private Aides For LTC residents With Dementia

Assisted-living facilities (ALFs) in New York (NY) can hold one or a combination of different types of licensure and certification: basic, enhanced, and/or special needs. According to NY Health Department regulations, ALFs with enhanced certification can provide “aging in place by admitting and retaining residents who desire to continue to age in place…able to provide skilled nursing services and to accommodate residents who exceed the retention standards” that are found in ALFs with only basic certification.

ALFs with a “special needs” certification are authorized “to provide services to residents with special needs, most commonly Alzheimer’s disease [AD], dementia, or cognitive impairment. In addition, the assisted living operator may choose to be dually certified to provide enhanced and special needs services, thereby further allowing residents to age in place.”But there will be times when residents with AD may require additional care, even in ALFs with both enhanced and special needs certification.

My late wife, Clare, was a resident with AD in a dually certified ALF in NY. However, at a certain point, the ALF required me to hire personal “home health” aides to be with her in order to remain there to age in place. (Even if care is given in ALFs and not in private homes, these aides are still referred to as home health aides.) According to NY regulations, “Personal care tasks that exceed the approved scope of tasks in which an assisted living resident aide is trained must be performed by trained home health aides.

Regulations governing enhanced ALFs also state: “A resident shall be permitted to…continue to reside and age in place…provided the operator, the resident’s physician, and, if applicable, the resident’s licensed or certified home care agency agree that the additional needs of the resident can be safely and appropriately met at the residence.”

According to the National Center for Assisted Living, ALFs are responsible for providing “coordination of services by outside health care providers.” But what exactly does this responsibility imply? What is meant by “coordination,” and what procedures should ALFs implement to provide this coordination?

Below are some experiences I had when my wife was a resident in an ALF, demonstrating the many instances where care coordination in long-term care facilities needs improvement.

• When my wife needed services provided by an outside health care provider, the ALF chose the agency. As the caregiver, I had no input. After observing and reporting negligent care and/or shoddy work habits of outside aides assigned to care for Clare, the AD unit supervisor told me I should contact the care provider. To their credit, new aides were assigned each time I complained to the care provider. But why didn’t the facility complain to the outside care agency to ensure that Clare was receiving proper care?
• My daughter and I spent time with each new agency aide to provide specific instructions for my wife’s care regarding food, clothing, personal hygiene, etc. But too often a different aide would be assigned the following day, an aide who had no knowledge of the specific instructions for my wife. When I would find out, my daughter and I would meet with the new aide, but why didn’t the AD unit supervisor communicate those specific instructions to new aides initially?
• I visited my wife on a daily basis, and several times I noticed aides arriving late or leaving early.  But no one at the facility ever informed me of when an aide arrived late or left early. Shouldn’t outside aide arrival and departure time be monitored by facilities? 
• When I received statements from the outside care provider detailing charges already billed to my credit card, I sometimes noticed billing for hours when the aide was not there, or overtime charges without advance notice that overtime rates would apply. But I could never be sure that aides worked for all hours billed when I was not personally there to verify such hours, and again, no one from the facility had recorded their presence. Shouldn’t outside care agencies submit their statements first to facilities for verification?
• It would be very helpful for already stressed caregivers if care facilities took more responsibility for supervising and coordinating personal aides hired by caregivers to allow their loved ones to age in place.

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Dr Vann is a frequent writer in caregiver magazines, medical journals, and in major newspapers. After his wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read his other pieces at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net. 

© Copyright 20

Published in Annals of Long-Term Care, August 7, 2017.  Access online only at:

www.managedhealthcareconnect.com/blog/coordinating-private-aides-ltc-residents-dementia

Personal Blog #2 ... The Truth About Alzheimer’s Disease Through the Eyes of a Home Caregiver

Although I had no editorial control over what was printed, Angels Homecare, a Chicago based organization, invited me to share some thoughts about caregiving for a forthcoming online article. That organization published its online piece today, 8/3/17, giving the perspectives of four Alzheimer's caregivers that readers may find interesting.  I am one of the four caregivers cited.

There is no way I can reproduce the pictures and graphics accompanying the online article to do it justice, but readers may go to their website page if interested in reading the complete article.  Cut/copy and paste this address into your browser:
myangelshomecare.com/the-truth-about-alzheimers/