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.