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!