Symbolizing the way we are
all woven together
in our fight against Alzheimer's Disease
5, Issue 1
January 7, 2001
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.
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
firstname.lastname@example.org, 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
Click here: Brain.com
Channels Clinical Trials
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.
Selfhood and Dignity in Individuals with Alzheimer's Disease
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
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
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
- 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
- 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.
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)
© 2000 Prism Innovations, Inc. (http://www.ec-online.net/). All Rights Reserved.
Maintaining Selfhood and Dignity in Individuals with Alzheimer's
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!
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.
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
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
Thank you again for your gift to all of us through The Ribbon.
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
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
Happy New Year
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 email@example.com. Thank you very much for
Until next time we send you
Hugs and Peace,
Jamie and Karen
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