Volume 17, Number 3

How Alzheimer’s Has Changed My Life

By Robin Leckie

his morning, I awoke with relief. I had only crashed from my bed to the floor, not been catapulted over a

cliff toward my certain death, as my nightmare had promised. My medicated mind was playing tricks again.

It seems like just a few days, not three years, since I called to my wife asking her to sit beside me while I shared some news. The win-ter sun was filling the room with warmth, and rainbow colours streamed through the stained-glass window. I had just returned from a doctor's appointment and now, what I had expected for some time, was diagnosed – I had Alzheimer's.

Earlier, as I returned home that morning, I remember feeling somehow relieved, even though this was what I had antici-pated. All those isolated moments of memory loss, confusion, and indecision now had a reason – in the same way as when we have a complaint and make a doctor's appointment and part of us hopes the complaint will still be there when we arrive. I was the same person before the

Spring, 2012

appointment as after; I still looked the same. But now I knew I was faced with an uncertain future.

I had had a successful and very enjoyable career as an actuary. I chose early retire-ment more than 20 years ago, prompted by my concern even then, over my occa-

sional lapses of memory. I knew I had not been performing at the high level I had set for myself. I gave up playing bridge because of my inability to remember the cards be-ing played. Increasingly, I was forgetting familiar names.

I recalled an appointment some years ago when I had actually passed the verbal Alzheimer's test given to me at my

request. Later, I again passed, but because of my history and concerns, the doctor in her wisdom recommended an MRI brain scan. Alzheimer's was then confirmed.

The good part was that now I could do something to slow the process. Instead of phoning my four children with the news of my diagnosis, I decided to write to each of them to let it sink in when they were alone. Alzheimer's can be hereditary, and I hoped they wouldn't worry for them-selves, as well as for me. I thought of (continued on page 2)

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How Alzheimer’s Has Changed My Life (continued from page 1) President Reagan and his letter to the nation, and his eventual downfall into oblivion. But for whatever reason, I was not worried.

We have also told our friends from the be-ginning. Most people who meet me are surprised to learn of my dementia. For some, Alzheimer's progresses very rapidly. For others, like my-self, the progress has been slow moving – possibly because of early detection and thus, early treatment, for which I am appre-ciative.

I celebrated my 80th birthday last year and still have plans for the future. Alzheimer's is not a death sentence. I never would have chosen it, but now that

Perspectives is published by

Shiley-Marcos Alzheimer's Disease Research Center University of California, San Diego 9500 Gilman Drive- 0948 La Jolla, California 92093 Phone: 858-622-5800 Fax: 858-622-1012 Email: lsnyder@ucsd.edu

Editor:

Lisa Snyder, MSW, LCSW, Clinical Social Worker

Editorial Advisors: Robyn Yale, MSW, LCSW Staff of the Shiley-Marcos Alzheimer's Research Center

Perspectives is published quarterly and is supported by the National Institute on Aging grant P50 AG05131. Copyright 2012. Electronic formats may be printed for personal or professional use, but please do not reprint newsletter articles for other publications without per-mission. Electronic subscription is free of charge. Sur-face mail subscription is a requested $20.00 donation.

All articles, unless otherwise cited, are written by Lisa Snyder, LCSW. For citation purposes, refer to the article author, title, and the newsletter’s complete name.

it has chosen me, I am concerned, but not fearful. We all live finite lives – I am now on a different kind of journey.

I no longer socialize much, preferring quiet times on my own, and since I now prefer familiar sights, I am thankful my work took me to many distant parts of our world. I begin my day with the Ken-Ken and Sudoku from my daily paper. I read every page of The Economist. I walk for an hour most days alongside the lake and through our country-like parks. I am able to contribute in our book club although I

must write down a list of the characters as I read. I can still occasionally beat my wife at Scrabble.

Even the healthiest amongst us, every day, dies a little with some loss or pain, but every day we can grow a little too. I read a recent obituary of someone who died

at 95 and he wanted his tombstone to read “Still curious.”

Sometimes when we are going through hard times, we say, “there's a light at the end of the tunnel.” With dementia I know there is no light. But in many ways my life is growing richer. I notice the colours and textures around me as I walk. I am no longer in a hurry to accomplish things. I have time to delight in my family.

I see my life as a movie, in slow motion where the camera lingers on what is im-portant and often a bright light illumi-nates a scene. In the amazing mystery of how our brains work, I may not remember what I had for lunch yesterday, but all my early adventures are still within me. I have written many little stories from my life

(continued on page 3)

“I see my life as a movie, in slow motion where the camera lingers on what is important

and often a bright light illuminates a scene. In the

amazing mystery of how our brains work, I may not

remember what I had for lunch yesterday, but all my early

adventures are still within me.”

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How Alzheimer’s Has Changed My Life (continued from page 2)

for my grandchildren.

When my wife took over the driving two years ago, I was at first a constant back- seat driver. I have to admit she probably thinks I still am, but I can't believe how pleasant it is to be a passenger, gazing at the people and sights as we travel on out-ings and to our endless appointments.

Alzheimer's is a process, a constant com-panion, a conjoined twin. While medica-tion has helped, I know of no diet or drugs or surgery that will suddenly cure me. I tire easily but I accept this; I am growing physically old, too. I become easily con-fused, am often dizzy, and increasingly have nightmares, but feel lucky to be in no pain. I know I am just one of many who carry some burden. One of my sons has juvenile diabetes, with no known cure as yet. And you just have to watch the even-ing news, and the ads for health products between the news, to realize there are many suffering in our midst.

I sometimes think this is my sunset time. The bright light of day is passing and darkness lies ahead. I do not know what the dawn will bring. But right now, in this moment, I am thankful my life is full.

Robin Leckie lives in Toronto, Ontario. We are grateful for his permission to reprint his article which originally appeared in The Globe and Mail, April 4th, 2012.

BRAINSTORMING

We asked people with Alzheimer’s:

What do you do to manage the frustrations of having memory loss?

Here are some of the replies:

“I try to think of something positive so I don’t descend into negativity.”

“I go to the refrigerator!”

“I take my mind to something I can do to take my focus off of what I can’t do.”

“I step away from whatever is bringing up the frustration and go back to it later.”

“I just recognize that I can’t do some of the things I used to do. I have to hire some help now. I don’t want to give up these things, but you have to allow someone else to do it. Then you don’t get frustrated.”

“I slow down – everything just takes longer and I have to concentrate more.”

“When I get frustrated, sometimes I swear (but quietly).”

“I do small steps. Instead of doing the complete list I may have done before, I just pick up a few of the most important things to do and focus on them.”

“I’ve learned to let the frustration go. I take a long walk and that relieves the ten-sion. I’m not thinking about anything ex-cept finding my way home!”

“I beat myself up too much and that makes the frustration worse.”

“Memory loss is not our fault. It’s Alzheimer’s fault. Take some deep breaths so you don’t blame yourself.”

“In many ways my life is growing richer. I notice the colours and

textures around me as I walk. I am no longer in a hurry to accomplish

things. I have time to delight in my family.”

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Question

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Answer

“When my doctor diagnosed me with Alzheimer’s, he prescribed

Aricept. What does Aricept do?”

The medications currently approved for Alzheimer’s disease (AD) - includ-

ing Aricept, Exelon, Razadyne, and Namenda - are symptom modifying drugs. That is, they reduce the symptoms associated with AD, such as forgetfulness, confusion, and difficulty performing activities. These medications do not, how-ever, affect the course, rate of progression of AD, or the underlying cause. Examples of symptomatic treatments include cold remedies. If a person suffers from the common cold, and its associated symp-toms such as sneezing, coughing, runny nose, and sore throat, physicians will of-ten prescribe medications to reduce these symptoms. The patient still has the cold, and the cold will run its course. The body’s immune system usually clears the virus, and the patient recovers.

In contrast to a symptom-modifying drug, a disease-modifying drug affects the course of the disease and makes its dura-tion less, or even stops its progression. Antibiotics are a good example of disease modifying medications. They stop an infection in its tracks. In the field of Mild Cognitive Impairment (MCI), Alzheimer’s, and related disorders, we are actively test-ing drugs that are thought to be disease modifying, through clinical trials in the hopes that they will slow down or arrest the progression of the disease. We will certainly keep readers informed of any ad-vances in these clinical trials.

Our thanks to Michael Rafii, MD, PhD for providing the response to this question.

RESEARCH UPDATE Detecting Amyloid in the Brain

The presence of beta-amyloid plaque in the brain is a hallmark of Alzheimer’s dis-ease (AD). Until recently, however, amy-loid protein could only be seen and stud-ied through autopsy of the brain after death. Being able to confirm the presence of amyloid in the brain during life could allow for a more accurate diagnosis of AD.

In April, 2012, the FDA approved Amyvid, also known as florbetapir. Amyvid is a chemical tracer that allows visualization of beta-amyloid plaques in the brain during life by using a PET scan (positron emis-sion tomography). A positive PET scan using Amyvid indicates that moderate amounts of amyloid plaque are present in the brain and suggests a diagnosis of AD, but is not definitive. It is important to note that a person can have some amount of amyloid plaque in the brain but not have any symptoms of Alzheimer’s and may never develop the disease. However, a positive Amyvid scan in conjunction with a neurological examination, medical history and physical exam, and some degree of neuropsychological testing may help confirm the diagnosis.

A negative Amyvid scan would indicate that there are no or very few amyloid plaques present and reduces the likeli-hood of an Alzheimer’s diagnosis. Any existing symptoms could therefore be due to another cause of dementia.

Although PET scan using Amyvid is now FDA approved, Medicare and other health insurance do not yet cover the procedure. Nonetheless, the Amyvid tracer for PET scan is eventually expected to be used in the evaluation and diagnosis of AD. It may also be used in clinical trials to measure efficacy of medications aimed at removing amyloid plaque from the brain.

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HELPFUL RESOURCES

Simple Solutions: Practical Ideas and Products to Enhance

Independent Living

any people hope that as they age or develop dementia, they will be able

to stay in their own home as long as possi-ble. With the advent of more technology and some innovative planning, there are many ways in which homes or day-to-day activities can be modified to support greater safety and independence.

The Hartford is a comprehensive financial services group that offers a variety of excellent publications free of charge. Simple Solutions – Practical Ideas and Products to Enhance Independent Living includes descriptions of over 200 prod-ucts and ideas that can enhance indepen-dence, safety, and comfort for seniors in their homes, including those living with dementia. Contents include:

• Vision Solutions • Hearing Solutions • Mobility and Balance Solutions • Strength, Dexterity, and Reach • Memory Solutions • Fire and Burn Safety Solutions

The 52-page booklet also includes a sup-plier guide that references where each suggested item can be purchased, as well

as a home checklist to enable the reader to assess the safety and convenience of his or her own home.

Modern Ideas, Modern Living: Taking the Next Step in Home Design

and Planning for the Lifestyle You Want

ome individuals or couples living with dementia face decisions about whether

to move to be closer to family or services; whether to downsize or settle into a retire-ment community; or whether design modifications to an existing home can make it more livable and accommodating to both physical and cognitive aging. Modern Ideas, Modern Living is a 32-page guide that provides helpful steps and questions, as well as priorities to consider when making these important decisions. It includes a number of “universal design” principles and checklists for homes that make them safer and more livable.

These Hartford publications are available to download in PDF format free of charge. Those residing in North America can also order print copies delivered by mail. To access or order these booklets and other publications from The Hartford, see:

http://www.thehartford.com/lifetime

Click onto resources to find these publica-tions and other resources, as well.

Home for a L i fet ime

SIMPLE SOLUTIONS:Practical Ideas and Products to Enhance Independent Living

MODERN IDEAS,MODERN LIVING:Taking the Next Step in Home Design and Planning for the Lifestyle You Want

H om e fo r a L i fe t im e

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A Different Kind of Business Card

any people with Mild Cognitive Impairment, Alzheimer’s, or a related disorder discuss the chal-

lenges of deciding how and when to tell others about their diagnosis. Memory loss or other symptoms may make some interactions or communication with oth-ers a bit more challenging at times, and it can be tiresome or awkward to have to ex-plain oneself. Although some people are very open about their diagnosis, others are less comfortable verbally sharing this information.

Recently, in a support group for people with early-stage memory loss, a partici-pant shared with her peers a laminated business card with a message on it (as noted below) that she carries to hand to others, as needed. Although she is not of-ten out alone, she states, “I use it when I travel sometimes because I’m slow to re-spond or I may do something weird and the card really helps people be more understanding. It’s amazing how many times I hand the card to people!”

Others in her support group took interest in the card and a generous care partner of one of the participants had a quantity of the cards printed for other group mem-bers to use. “I use it as an introduction,” says one man. “The card gives my condi-tion a reality and I don’t have to keep tell-ing people or explaining myself.” An-other support group peer finds a very per-sonal use for the card and says, “I use it to remind myself that I’m not stupid – that I have a medical condition that affects my memory.”

The use of such a card can also help to raise awareness. One man tells the fol-lowing story: “I walk the neighborhood a lot and sometimes someone will say ‘hi’ and then say, ‘you forgot my name didn’t you!’ Then I show them the card and they treat me differently and have better understanding. Now my neighbor says ‘hi’ to me and includes her name with her greeting, so that’s a big help.”

Not everyone will be comfortable carrying or using such a card. Some prefer to keep their memory loss private, while others would rather just tell someone they have memory loss rather than hand out a card. The card can, however, provide a more discreet way to share this information.

Some care partners have reported that a variation on this kind of card can be help-ful in settings such as restaurants with waiters, or in airport security lines. Varia-tions for caregivers may read something like: “Please be patient. My companion has a memory impairment and may re-quire a few extra moments. We appreciate your understanding.”

If you are interested in obtaining this kind of card, contact your local Alzheimer’s or-ganization to see if they have cards and if they do not, perhaps they will be inspired to create them! Another option is to have cards created, printed, and laminated (for improved durability) at a local office sup-ply or printing store.

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Thank you for your patience.

I have a memory impairment and

may require a few extra moments.

Your understanding is appreciated.

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The Unforgettables A Chorus for People with Dementia

and Their Family Members

By Mary Mittelman, DrPH

he results of the few research stud-ies done to date suggest that shar-ing a pleasurable arts-based experi-

ence can enhance the relationship be-tween people with dementia and their family members, while also contributing to their quality of life. We recently started a chorus for people with dementia living at home and their family members, and are exploring the effects of shared participation in an enjoyable social and creative activity.

Beginning in June, 2011, we conducted our first small study to develop specific strategies to maxim-ize the enjoyment of participants and de-termine essential de-tails, such as the most appropriate choral ar-rangements, duration of rehearsals and amount of time for socializing. We identified a venue in New York City and two choral conductors. We enrolled 11 people in the early-to-middle stages of dementia, each of whom partici-pated with a family member or close friend (a total of 22 participants). In a tribute to the enduring value of a sense of humor, the chorus named themselves “The Unforgettables.” They rehearsed weekly for three months for a concert on September 1, 2011 that was attended by family members, friends, and members of the community.

Program evaluations were conducted by social workers at the New York University Comprehensive Center on Brain Aging. The results were very encouraging. The improvements in mood were evident to

the onlooker, but results of focus groups made it clear that participants valued the experience, both because of the singing and the social support. Even with the small number of participants in this initial study, the evaluations revealed improve-ment in quality of life for both the people with dementia and their family members. No one dropped out and the original cho-rus is continuing to rehearse weekly. They gave a second concert in December of 2011 and a third concert on May 3, 2012. Each practice and recital has provided a sense of community and renewed strength in the face of illness. The pleasure this process has given participants was clear from the start. The chorus has proven to be a wonderful place to be, where no one

feels stigmatized.

The community cho-rus is designed to en-sure a high quality as well as a rewarding experience for the singers, while also enriching and educat-ing the wider commu-nity through the con-cert. The chorus pro-

vides much needed visibility to the enor-mous potential of the arts to enhance the well-being of people with dementia and their family caregivers.

Patterned after The Unforgettables, the Alzheimer’s Association of Northeastern New York has recently established The Joytones in the 17-county region it serves. The program has enrolled 15 participants thus far who rehearse weekly. There are no auditions. The Joytones is open to indi-viduals at any level of singing ability. For more information about The Unforgettables, contact Mary Mittelman at mary.mittelman@nyumc.org or 212-263-7560. For information about The Joytones, contact Bill Hinrichs at 518-867-4999 or william.hinrichs@alz.org

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Members of The Unforgettables chorus

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9500 Gilman Drive – 0948 La Jolla, CA 92093