Volume 5, Issue 1 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease
Volume 5, Issue 1
January 7, 2001

www.TheRibbon.com

Welcome to the year 2001. I have a wonderful feeling in my heart that this is a year to bring good news in the world of Alzheimer's Disease. Last year there were quite a few developments and hopefully this year will bring even more. Lets all keep our fingers crossed and continue to send up our prayers.

Links

I hope everyone has joined The Caregivers Advisory Panel.This group lets us express our needs, opinions, insights in order to help manufacturers develop future programs and products targeted to fit the needs of caregivers. You will receive a newsletter by mail letting you know what is happening along with other news.

You can enroll by calling toll free at 1-877-595-6227, emailing alperadm1@aol.com, or join online at www.caregiversadvisorypanel.com

Are you interested in finding a clinical trial near you? Here are a couple of links to help you find what's available.

Click here: New Trials
www.alzheimers.org/trialwwws/newtrials.html

Click here: Brain.com Channels Clinical Trials
www.brain.com/channels/clinical_trials/

Some of you may be familiar with The Merck Manual of Medical Information - Home Edition. The manual is now available free on the internet!!!! You can check it out in both text-only and interactive versions. For those who are on Mac computers there will be a version for you soon. Check it out at MerckHomeEdition.com

The Merck Manual of Medical Information - Home Edition

For a FREE Caregivers Survivor Kit check out:

NFCA: National Family Caregivers Association: Caregiving Resources.
http://www.nfcacares.org/

Maintaining Selfhood and Dignity in Individuals with Alzheimer's Disease
by Nancy Bryce, Contributing Editor, Eldercare Online

Many professionals and family caregivers are concerned that we are "labeling" people with Alzheimer's Disease instead of seeing each one as a person. Dorothy Seman, RN at the Alzheimer's Family Care Center in Chicago, says, "It is important to know what disease a person has, but more important to know the person the disease has." Seman also says, "People with dementia are much more than plaques and tangles." By speaking with people in the early stages of Alzheimer's Disease, we get insights into their needs and how to support their independence and dignity.

Every person afflicted with Alzheimer's Disease will react and deal with the disease differently. Some will show improvement with different drug therapies while others will not. Support groups may be beneficial to some while others may find them unnecessary. At the recent World Alzheimer's Congress in Washington, DC, several people with Alzheimer's Disease spoke about their different needs and outlooks on the future.

There was Tom who said, "Alzheimer's has been the best thing that ever happened to me. It freed me to do things I wanted to do all my life." Then there was Gloria who wanted everyone to know that she has a memory problem but does not feel that makes her "demented". "Demented", she said, "means without a mind" and she does have a mind. And there was Dale who found out he had Alzheimer's Disease at age 57. He and his wife have benefited greatly from the support groups they attend. Both caregivers and patients were full of hope for the future and expressed the need to maintain selfhood as the disease progresses.

Common Themes Among People
Diagnosed With Alzheimer's Disease

Lisa Snyder, LCSW at the University of California, San Diego, identifies six common themes that arise when a person is diagnosed with Alzheimer's Disease. Understanding and anticipating these themes will help both the caregiver and person with the disease to maintain dignity and independence, while laying the foundation to a mutually supportive relationship as the disease progresses.

Denial. Too many people believe that people with Alzheimer's Disease are not capable of understanding the disease. However, Snyder has found that some may go through periods of denial because of the difficulty in accepting the disease. Bill, a person diagnosed with Alzheimer's Disease said, "I'm interested in this idea of denial. I think denial is helpful sometimes. You don't want to carry this all the time. Denial can be very adaptive. It's a psychological defense; we all use it and it can give us time to accommodate to a circumstance that may be very challenging." It is understandable that there is denial in some cases because of the unpleasant stigmas associated with the disease. James, another patient said, "A degree of denial is essential; like somebody drinking hot coffee, we sip the truth of our condition gently."

There may also be denial due to the fear that the person with the disease may become prematurely dependent. Or they may simply forget that they have the disease. Persons with Alzheimer's Disease need understanding if they fluctuate between acceptance and denial.
Ambivalence in Disclosing Diagnosis. Because there is not widespread understanding of Alzheimer's Disease, there are often misconceptions about the disease. Some with the disease fear that others will think the disease is contagious. Those diagnosed may also fear the stigma associated with the disease; therefore, they may not disclose it to their friends or family. Betty, a person with Alzheimer's Disease, said, "when it comes to Alzheimer's, you're not sure how people will respond to you, people may brush you away because they're afraid of the disease." Snyder believes the ambivalence begins in the doctor's office. She contends that when doctors do not appropriately disclose the Alzheimer's Disease diagnosis to family members, that they are beginning the cycle of ambivalence.
Wanting Things to Stay the Same. There are often times when the feeling of: "If things could just stay as they are at one point in time," that those with Alzheimer's Disease could learn to adjust to the disease. Harry said, "If only it could stay just as it is now; it would be great." Unfortunately, with this disease, it is always changing. Each day is different. One day the person with Alzheimer's Disease may be able to do something and the next day they may not.
Fear of the Future. Among Alzheimer's Disease patients, there is a fear of losing a sense of self. "What is going to happen to me?" is often the question that arises among those with the disease. One woman said, "I'm almost 71 and I'm not amazed that people die, so it isn't the death; it's the loss of oneself while you're still alive." There are so many tragic images that can lead to fear of losing oneself to the disease. One wife very aptly said, "I'm very much aware that it's a true medical disease. I realize now, at least in our case, that it appears to be a gradual process so it's something we have to work our way into and through. So I'm finding it doesn't mean an immediate personality change or becoming violent like I've heard. All this stuff you hear may happen among some people at some level but it's gradual and you can adjust to it."
Day to Day Experiences of Memory Loss. Everyday is a new experience with Alzheimer's Disease. One person adjusting to the disease said, "I take a step before doing something and ask, 'Am I the same person? Can I do this?'"There may be daily changes in language and abilities to do certain tasks such as driving or paying bills. One man, who was an editor, said, "I'll search for a word and I can see it walking away from me; it gets littler and littler, it comes back to me but at the wrong time; I can't be spontaneous." Bob described his feelings about no longer being able to drive. He said, "losing my driver's license was like someone cutting off my arm. I lost something that was a part of myself."
Changes in Self-Esteem/Self-Concept. Everyone defines themselves by their roles in life or by their characteristics. Those with Alzheimer's Disease may be in a state of flux about how to define themselves. For example, before Alzheimer's Disease, a mother may have defined herself by the role she played as the matriarch in the family. A man, who defined himself by his role as a doctor, may now find that that persona is lost. One woman demonstrated her ambivalence about her identity when she said, "sometimes I'm me and sometimes I don't know who I am, I don't know. It comes and it goes. You're not really you, you've got someone kind of in back of you." Those with Alzheimer's Disease need to be reminded that they are still people who will continue to be remembered for the roles and traits that defined them as well as their new roles. In later stages of the disease, providing the person with activities that reflect their previous expertise and interests enhances their peace of mind and autonomy.

An Alzheimer's Disease Bill of Rights

Virginia Bell, MSW and David Troxel, MPH, authors of The Best Friends Approach to Alzheimer's Care, have created "An Alzheimer's Disease Bill of Rights" in which they define the needs of people with Alzheimer's Disease to maintain their selfhood and hopefulness. They write:

Every person diagnosed with Alzheimer's Disease or a related disorder deserves:

To be informed of one's diagnosis.
To have appropriate, ongoing medical care.
To be productive in work and play as long as possible.
To be treated like an adult, not a child.
To have expressed feelings taken seriously.
To be free from psychotropic medications if at all possible.
To live in a safe, structured and predictable environment.
To enjoy meaningful activities to fill each day.
To be out-of-doors on a regular basis.
To have physical contact including hugging, caressing, and hand-holding.
To be with people who know one's life story, including cultural and religious traditions.
To be cared for by individuals well-trained in dementia care.

Insights on Helping Their
Loved One Maintain Selfhood

Daniel Kuhn, MSW at the Mather Institute on Aging, stresses the need to reach people with Alzheimer's Disease in the early stages of the disease. He said, "Much more can and should be done to prevent the distress of patients and families through early intervention; not only with drugs but in terms of education, training, counseling and other supportive services. By intervening at the earliest stages, those with Alzheimer's Disease can be included in the treatment of their disease and can be supported by family and friends to help them maintain a strong sense of self and hopefulness." Both caregiver and patient should attend support groups.

Insights for families coping with Alzheimer's Disease:

Allow your loved one with Alzheimer's Disease to express herself verbally and creatively.
Advocate for autonomy, choice and independence. Don't always jump in and try help your loved one. Let them do it themselves.
Create a healthy habitat, environment and atmosphere.
Encourage discussion of present and future. Don't only reminisce.
Your loved one may have greater fear and concern with "looking stupid" or being embarrassed in public than in forgetting things.
You will likely have to rearrange your lifestyle, perhaps retiring early or moving.
Explore and implement legal and financial planning changes as soon after diagnosis as possible after consulting skilled professionals.

Especially for the caregiver:

Find time for yourself.
Learn to be patient.
Come to terms with your loved one's dependence and decline.
Learn how to really listen.
Caregiving can be lonely. Maintain your friendships and attend support groups.
Live one day at a time.

These insights are easy to write out, but hard to live with day-by-day. Caregivers can find camaraderie and empathy in support groups through their local Alzheimer's Association, hospital or nursing home. Internet support and discussion groups provide an opportunity to interact any time of the day or night.

Resources

Books

Alzheimer's Early Stages: First Steps in Caring and Treatment by Daniel Kuhn
Speaking Our Minds: Personal Reflections From People With Alzheimer's by Lisa Snyder
The Best Friends Approach to Alzheimer's Care by Virginia Bell, MSW and David Troxel, MPH

Early Alzheimer's, An International Newsletter on Dementia, 2024 De la Vina Street, Santa Barbara, CA 93105, phone number: (805) 563-0020.

HealingWell.com - Maintaining Selfhood and Dignity in Individuals with Alzheimer's Disease

Thanks!

A big Thank You goes out to Jon Stewart of The Daily Show on Comedy Central. He played Who Wants To Be A Millionaire and donated his $125,000 winnings to The Alzheimer's Association. Way to Go Jon!

Book Nook

We need your help. If you know of a book on Caregiving, Eldercare, or Alzheimer's that you think others would be interested in please let us know. We are setting up to have a link with Amazon.com with books you would be interested in reading. Thanks in advance.

E-Mail Bag

From JESwingLA

Dear Karen, etal: What a wonderful informative issue. I can't end the year without thanking you all for your hard work for those of us who are watching our family members suffer and endure the indignities of this dreadful disease. Your work is a great help. Thanks again, JoEllen

From CAREVOICE

Dear Grandma,

What a beautiful poem you wrote in The Ribbon to remind us of what is really important in life...taking time for our loved ones and even others ... after all someday, we will find ourselves whiling away the endless hours wishing someone would lend us their ear, touch our arm, or even take a moment to look at us because we exist.

You have reaffirmed my effort to spend time not only with my father, but to be there for the others--at my father's home, there's also Edna, Reva, Sonny, Elizabeth, Don, and all the others I take time to share a smile, help feed, rub a shoulder, hold a hand, tuck into bed...to just be there if only for a few minutes...because someday, I will be reaching out my hand hoping someone will take it in theirs and giving me a smile and their ear.

Thank you again for your gift to all of us through The Ribbon.

Genuinely Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Speaker and Author, "Where's my shoes?" My Father's Walk Through Alzheimer's (NOW AVAILABLE in Audiobook!) and soon-to-be-released, CAREGIVING 101 and Finding the JOY in Alzheimer's: Caregivers share the JOYFUL times

From me.allen@juno.com
I thought you'd like to know, I've received so much mail as a result of my Christmas story about the little boy and his grandmother in The Ribbon. Those who have, or have had, a family member with Alzheimer's or some form of dememtia, derive comfort when we share with them. I'm pleased I can do this through The Ribbon.
Happy New Year

From agsente@pipeline.com

Hello,

I am in the process of starting an online forum for caregivers at www.delphi.com/careshare. My hope is that it will become a community where anyone caring for someone with a serious illness can find information and support. Using the internet for this purpose is an ideal way for caregivers around the world to connect with one another.

Please feel free to mention this forum to any caregivers involved with your agency. If you would like to contact me, I can be reached at agsente@pipeline.com. Thank you very much for your time.

Sincerely,
Audrey

Until next time we send you

Hugs and Peace,
Jamie and Karen