Volume 12, Number 3

Thoughts on the Importance of Community

By Shimon Camiel

Editor’s note: Shimon has a doctorate in public health and was diagnosed with Alzheimer’s over five years ago. He was born in San Diego, California, and spent 17 years as an adult living on a kibbutz in Israel. He is the author of three books and resides with his wife in San Diego.

am a public health person and part of me is impaired now, but I’m not going to quit doing public health. What

public health looks at are communities. Just imagine yourself up in the air somewhere and you’re looking down and saying this community down there is having some trouble. So that’s the meat of public health. We see it, then we might try to help change it to make it work better.

Alzheimer’s is one commu-nity. I don’t think we’ve looked at the needs of Alzheimer’s people and their families enough. We’re getting older and we’re so separate from each other. I have a feeling of sadness for people who are isolated. You need warmth, especially initially, when you find out you have this disease. I would spend a lot of money making that time easier. Educating family and friends about the disease can bring you all closer.

February-April, 2007 When I first learned about my condition, I thought I was going to die right away. Those first couple of days or months, I thought that maybe I’d jump out of a building or something, but then it passed. The main thing is the support I have from my wife and pals. Because of my positive experience living on a kibbutz, I’ve had to create a commu-nity here. A kibbutz looks and functions like any other place except that at the end of the year everybody gets the same amount of money. Most people rotate jobs often, taking their turn in different work places. Some people do the same

kind of work all of the time, but each one of us has to help out the entire group. There is always some person who has to do the dirty jobs, but the next day it will be someone else’s turn. So we do whatever is needed to keep a decent community going. There are people who wouldn’t feel they want to work together – for them, there are other systems, but the system that is best for me is equality – working to-

gether as closely as possible.

I remember in the kibbutz – when some-body left the kibbutz for a time and re-turned, everybody knew he was back right away, and he knew everybody in the whole place. That’s a village. So we need to have more villages wherever we live. If you (continued on page 2)

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Perspectives

A Newsletter for Individuals with Alzheimer’s or a Related Disorder

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“I guess there are people hiding in a closet that never get out, but in general people need to touch

people and to surround each other and feel connected, even if

you don’t have Alzheimer’s.”

Thoughts on Community (continued from page 1)

went to any rural community in the United States, you would probably find a similar kind of thing. I feel we don’t have that kind of interest in each other in our cities as much, but I would say closeness and concern for each other are major fac-tors in quality of life.

I had so many people around me when I was diagnosed. That was my comfort and my community. I think that’s why I landed on my feet. For a half a year or so, I was feeling sorry for myself, but now I’m having a great time. After that first shock I found myself kind of beginning to get back into my mischief and my laughter. I know some people who have no humor at all and I don’t know how to fix that. I grew up in a family of people who were joking.

There are so many things to do in life. Right now I have this entourage of friends I walk with often. I’m just moving ahead. I don’t think I’m a hero, but I just became interested in moving around – in explor-ing. Many Americans don’t do enough as far as their bodies are concerned. That should be a huge priority - getting people to move around more. Without that, you’re just stuck. You need people around you. I guess there are people hiding in a closet that never get out, but in general people need to touch people and to sur-round each other and feel connected, even if you don’t have Alzheimer’s.

I love to see people forming families and connections. Our support group has that – we are family – its a little family. I would like it much larger! Not that I want to create more of this disease in order to

make that happen. Feeling safe, not para-noid, but feeling the warmth of family. We have that in our support group. Peo-ple need to touch each other and be touched. I don’t want community to be just a lucky occurrence – it’s part of what

decency is. We need that so much. We need to give some time to thinking about that and how to make that happen.

Editor’s note - In his essay, Shimon talks about the great value of community. Over the years, Perspectives newsletter has helped to build a sense of community among people with Alzheimer’s or a related disorder from all around the world. Perspectives reaches people in many different countries and strengthens our international connections. If you would like to share your thoughts with this community, please send any reflections, letters, or comments to Lisa Snyder at the mail or email address below. We look for-ward to hearing from you! 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

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 2006. Electronic formats may be printed for personal use, but please do not distribute the newsletter in any form without permission. Electronic subscription is free of charge. Surface mail is a donation of $20.00 for US subscribers, $22.00 for international subscribers.

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

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New Book Reviews

Alzheimer’s from the Inside Looking Out

By Richard Taylor

Reviewed by Daniel Kuhn, MSW Author of Alzheimer’s Early Stages – First Steps

for Family, Friends, and Caregivers

he latest firsthand account about living with Alzheimer’s disease (AD) is Richard’s Taylor’s provocative

book, Alzheimer’s from the Inside Look-ing Out. Forced to retire from his job as a psychology professor due to early onset AD, Richard found that writing was not only therapeutic, but also helpful to others interested in learning about the disease. Written with the aid of voice recognition software, more than 80 essays describe his insights and experiences since he was diagnosed more than 5 years ago.

Richard’s intelligence, sensitivity, anger, humor, and tenacity shine throughout this book. With brutal honesty, he dissects his thoughts and feelings about the disease that is slowly robbing him of his intellect. He rails against doctors and other well-meaning people who unintentionally mar-ginalize him. He wants to be recognized as a full human being in spite of his im-pairments that are not obvious to the reader. His wife’s moving tribute in the book’s introduction and his description of his symptoms reveal the dilemma of any-one living with AD: the appearance of normalcy disguises the reality of the changes occurring in the mind. Family caregivers and professionals have much to learn from such personal accounts.

Richard is clearly on a mission to change how the world thinks and acts toward him and millions of other people affected by dementia. This book moves that mission forward.

Strengthen Your Mind

By Kristin Einberger and Janelle Sellick

Reviewed by Judy Filippoff, MSW

his book is just what many people with early memory loss who are seeking mental stimulation are

asking for. While not a cure for memory loss, the book is packed with creative tools that stimulate a variety of senses. It pro-vides an enjoyable way to stimulate mem-ory and thinking while alone or to enjoy together with family and friends. One woman with Alzheimer’s said, “I’m having a good time doing these. I really didn’t know I was this good at trivia!”

In a group setting, this book will provide enjoyable activities with diverse choices that will work for people with a range of abilities and challenges. One participant of a memory loss group that uses the book states, “This would be great for a half-day class. There are so many choices in what you could do that you wouldn’t get bored. After you finish one of the exer-cises you feel like you accomplished something and had fun!” Hints for fa-cilitators and activity directors on how to incorporate tactile sensations with the worksheets are included, along with solid suggestions on how to use the worksheets to their fullest potential. This is one of the most straightforward, useful, and enjoy-able resources I have seen for those who want to take a proactive approach to en-hancing memory, and for those of us who want unique ideas on how to provide this opportunity for individuals with early memory loss.

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The Chicago Memory Bridge Initiative

By Marie Chedid

he Chicago Memory Bridge Initiative (Memory Bridge) is an after-school program created by the

Foundation for Alzheimer’s and Cultural Memory and funded by the Illinois De-partment of Human Services. The mis-sion of the program is to develop emo-tional and social sensitivity in middle and high school students while keeping indi-viduals with Alzheimer’s disease in long-term care facilities meaningfully con-nected to people in their community.

Throughout the twelve-week program, students learn how to listen attentively and supportively to people with Alz-heimer’s. Eighty-six year-old Hanna and teenage Diana met through the Chicago Memory Bridge Initiative. Hanna lives in a long-term care residence in Chicago; Diana is a high school student on the city’s north side. When Hanna and Diana get together, they can’t stop talking. “She knows a little about everything,” Diana says when speaking about Hanna. “I can talk to her about anything.”

“She is very sweet,” Hanna says about Diana.

The students’ objective is to create a trusting and creative environment so that everyone feels comfortable sharing about themselves. The students also learn about the brain, memory, and the cultural and social foundations of identity, but they ex-plore these subjects as they are experi-enced by people with memory loss. In this way, a student in the program like Diana learns that although Alzheimer’s disease may impact Hanna’s life, it does not de-fine it.

Hanna was born in Germany. Diana was born in Romania. When Hanna and Diana get together, Hanna tells stories about her family and her work; she asks Diana questions about the jewelry she has on or where she buys her make-up. Diana talks with Hanna about growing up in Romania, how she was scared to come to the United States and about her adjust-ment to life in the United States. She is always eager to fill Hanna in on what she has planned for the weekend or the latest gossip. It’s safe to say that Hanna and Diana are friends.

In the fall of 2006, Memory Bridge re-ceived two awards from the Illinois Healthcare Association, the 2006 Media Award and the Innovative Program Award. But the magic of the Chicago Memory Bridge Initiative isn’t hidden in a 12-week curriculum or in its awards. It exists in the conversations between Hanna and Diana, in the richness of the memories that Hanna shares with Diana, and in the knowledge about Alzheimer’s disease and the life lessons that Diana takes from this relationship with her into her adulthood. The magic is the relation-ship that forms a bridge between two peo-ple.

For more information on the Memory Bridge as well as the Foundation for Alzheimer’s and Cultural Memory, see http://www.memorybridge.org/.

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Research Update

esearchers continue with ongoing ef-forts to create effective treatments for

Alzheimer’s. The medications currently on the market help some people function at a higher level for a longer period of time by increasing levels of brain chemicals re-sponsible for memory. These medications do not, however, alter the course of the disease. Two medications currently under investigation may actually slow the pro-gression of Alzheimer’s by reducing brain inflammation and reducing levels of the damaging amyloid protein that deposits in the brain.

Alzhemed™ has now completed its North American phase 3 trial. Phase 3 means that the drug has passed through initial safety tests and has shown enough prom-ise to be tested in large numbers of people for its effectiveness. The data from this last study are being analyzed now and are likely to be presented in June at the Alz-heimer's Associations’ International Con-ference on Prevention of Dementia in Washington, D.C.

Flurizan™ (also called MPC-7869 or r-flurbiprofen) is also in phase 3 trials and aims to lower levels of amyloid protein in the brain. In a phase 2 clinical trial in persons with mild-to-moderate Alz-heimer’s, the medication was well-toler-ated and some of the study participants showed evidence of slower decline in some aspects of their thinking.

These potential “anti-amyloid” drugs are an exciting direction in treatment for Alz-heimer’s. We will keep you updated as further study results are made public.

BRAINSTORMING We asked a group of people with Alzheimer’s:

“What do you do when you don’t remember someone’s name?”

Here are some of the answers:

“I tell them I have a memory problem and don’t remember names any longer.”

“I hope there is another person in the group who knows the person’s name and uses it. So I just listen and wait.”

“I introduce myself (even if we might al-ready know each other) and hope that they do the same.”

“I just call everybody ‘honey’!”

“I just say ‘Hey buddy, how are you do-ing?’”

I was at a reunion and I just looked at eve-ryone’s name-tags. Thank goodness for name tags!”

“My wife covers for me by repeating the person’s name in front of me while we’re all talking together.”

“If we’re going to a large gathering or so-cial event, I rehearse the names of the people who might be there beforehand. If it’s a family gathering, we go over photo albums. We have a huge family and it’s hard to keep track of everyone!”

“I engage them in conversation long enough so that something jogs my mem-ory.”

“I’ve told everybody that I have Alz-heimer’s. It’s about as good an excuse as you can get for forgetting someone’s name!”

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Your Life Story: Easy and Fun Ways to Create

an Autobiography

any people with Alzheimer’s or a related disorder have trouble remembering recent events, ac-

tivities, or information, but retain vivid memories of the more distant past. A memory from childhood may be clearer than the show you watched on television last night. Some people fear that with a progressive memory problem, they will lose these long-term memories and their sense of personal history or identity. It is true that over time, it may become more difficult to remember specific facts or de-tails, but there are many biographical memories, stories, feelings, thoughts, and opinions that you can continue to com-municate to others if given a chance.

Although everyone’s life has its share of challenging or painful memories, there are also many pleasant ones to recall. It can be a rewarding ac-tivity to reflect on the full story of your life and to share it with others. The idea of writing an autobiography may seem over-whelming, but there are some fun and easy ways to share your stories and to re-cord them for a family keepsake. There are a number of formats available to help you and your family record your re-flections and personal history in an enjoy-able and interactive way.

There are many different books available that enable you to share your life story by writing your answers to a series of questions laid out in the book. If you are not comfortable writing, you can have a family member or friend ask you the question and write down your answer as

you reply. This provides an interactive experience that often sparks interesting conversation. Questions in these books may evoke specific memories, such as “What was one of your most memorable toys as a child?” Other questions are more philosophical and timeless such as “What kinds of qualities do you look for in a friend?” Questions cover experiences about family, friends, education, work, and spiritual or philosophical beliefs. Not all questions may appeal to you, or you may choose not to discuss some of the topics. But chances are, many of the questions will help to prompt interesting reflections or memories that may other-wise never be shared.

If your memory loss worsens, it is likely that you will need more assistance from others. Some care may be pro-vided by family or friends who know you well. But it is also pos-sible that new people may enter your life. You may meet friends or aides who are trying to

be of help, and sometimes it takes time to get acquainted. These autobiographical journals can help others learn about your personal history, values, likes, and dis-likes. Reviewing a passage in the journal together might prompt recall or provide an avenue for reminiscence. If memory fails, your journal will serve as a record of your life experiences and it can speak for you.

There are a number of resources for re-cording your life stories. One option is through the innovative company, LifeBio, Inc. The company has a number of differ-ent ways to create your life story. Their Memory Journal available for purchase contains over 250 biographical questions

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Your Life Story (continued from page 6)

where you can write your answers or have someone transcribe your answers for you. The company also has an audio recording kit that explains how a loved one can in-terview you and record your stories. You can also write your autobiography on your own web page provided by the company and then print it out to create your own book. This is a wonderful interactive project to do with a grandchild or child who is computer savvy and would enjoy working with you to share your stories. For information on the LifeBio company products, call 1-866-543-3246 or visit the web site at http://www.lifebio.com

Another option is Conversations by Susan Goldfein. This booklet provides an inter-active photo and story album designed to help the reader create his or her life story. The format of the booklet helps the user recall and record memories spanning from early childhood to the present day. The finished book becomes a personal history that can include photographs, re-cords of significant life events, and per-sonal narratives. Order through Ideas ‘R’ Popping by calling 203-221-7917, or emailing info@ideasrpopping.com

Other references that include the question and answer format can be found in book-stores, often under the journals or geneal-ogy sections. Some popular titles include The Book of Myself by Carl and David Marshall or A Family Legacy for Your Children – Reflections from a Mother’s Heart, edited by Terry Gibbs.

Give these autobiographical journals a try, and consider working on one with a family member or friend. You might be surprised by how much memory you do still have!

Question and Answer

“My doctor told me that I have ‘dementia’. Is that

the same as Alzheimer’s disease?”

Dementia is a general category for over 70 different medical conditions

that result in decline in thinking abilities. Areas of thinking that are commonly af-fected include memory, attention, lan-guage, problem-solving, and judgment. The most common cause of dementia is Alzheimer’s disease, accounting for up to 60% of all cases of dementia. Other medi-cal conditions that cause dementia include stroke (also called vascular dementia or multi-infarct dementia); Pick’s disease (also called Fronto-temporal dementia); and Lewy-body dementia. Less common causes include Huntington’s disease; Creutzfeldt-Jakob disease (also called Mad Cow disease); and head trauma, among others.

It is very important to have a thorough diagnostic evaluation of any decline in thinking abilities. Some causes of dementia are reversible, including those due to vitamin deficiency, tumor, depression, or a number of other conditions. Your doctor needs to do a thorough evaluation that includes a brain scan, blood work, and cognitive testing (a series of tests that evaluate your memory and other areas of thinking) to determine what is causing your symptoms.

If you have been diagnosed with ‘demen-tia’ it is important to ask your doctor what type of dementia you have. The symp-toms and treatment can vary between the different dementias, and with more spe-cific information, you can better learn about any available help or treatment.

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Lisa Snyder, LCSW UCSD Shiley-Marcos Alzheimer’s Research Center 9500 Gilman Drive – 0948 La Jolla, CA 92093