|Home|Newsletter|Communicate|About Us||Tuesday, September 22, 2020|
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.
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.
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
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
For a FREE Caregivers Survivor Kit check out:
NFCA: National Family Caregivers Association: Caregiving Resources.
Selfhood and Dignity in Individuals with Alzheimer's Disease
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
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.
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.
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:
Insights on Helping Their
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:
Especially for the caregiver:
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
Early Alzheimer's, An International Newsletter on Dementia, 2024 De la Vina Street, Santa Barbara, CA 93105, phone number: (805) 563-0020.
© 2000 Prism Innovations, Inc. (http://www.ec-online.net/). All Rights Reserved.
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.
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
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.
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 firstname.lastname@example.org. Thank you very much for your time.
Until next time we send you
Hugs and Peace,