Voices of people with early stage Alzheimer's

I was struck by a blog entry from Natasha recently. She said something like this: "There is very little advice, information or understanding, related to the emotional needs of the person who is in the early stages of Alzheimer's."

I'd like to believe I have some small insight into the emotional needs of people with Alzheimer's, but I'm certain I can't fully understand. Only people with dementia can speak to their emotional needs. But I can share the voices of a few individuals I've met (or read) through the years who courageously share their journey.

Mike Donohue is one such gentleman who openly speaks about his experience. Mike writes (in "Taking Action"): "Nearly three years ago I was diagnosed with Alzheimer's disease. I was shocked and very upset. Why me? This can't be true! After giving it some time to set in, I told myself: OK, I have it. I am not going to change it, so what am I going to do about it? ... What works for me is (choosing) my attitude ... and I find I can by remaining in contact with folks, finding new friendships among those with the same disease and getting active about sharing my experience with living with this disease."

Lisa Snyder, MSW, LCSW, director, Quality of Life Programs at the University of California-San Diego, writes a newsletter called "Perspectives." This publication is one of a growing number of resources that attempts to address the needs and experiences of persons living with dementia.

In a recent newsletter, Phil shared his thoughts on living with Alzheimer's: "I do not live beyond today; I do not live in yesterday, or expect anything from tomorrow except what it brings, and I will deal with it then."

At an Alzheimer's Association Early Stage Town Hall meeting several years ago, individuals with early stage dementia gathered to candidly share their views, experiences and feelings about living with the disease. Here is a small sample of what they wanted others to know:

"Give us an opportunity to grieve ... and the right to be angry."

"I encountered family and friends who were reluctant at first to accept my diagnosis, and it meant dealing with their denial. It would be helpful for them to accept it rather than pretend it doesn't exist."

"I am scared. I don't know how long I will be able to work, care for myself, stay at home, and the like. My husband and sons tell me not to worry; they will take care of me — but what a burden will I be?"

"I am Sylvia. I was Sylvia before I was diagnosed, and I am still Sylvia after being diagnosed. I'm still the same person — treat me the same way. Talk to me the same way. Include me in the conversation as you would before."

Here are 2 comments from persons with Alzheimer's, from the booklet "What Happens Next?"

"This disease is a major attack on your confidence."

"I'm still me, with kinks."

If you have Alzheimer's or a related dementia, I welcome your words, thoughts, and feelings.

Please use these additional resources.

Taking Action: A personal and Practical Guide for Persons with Mild cognitive Impairment and Early Alzheimer's disease
(To order call the Alzheimer's Association Helpline at (800) 272-3900 or go to their website at http://www.alz.org/mnnd/?or to http://www.alz.org/mnnd/documents/2010_Taking_Action_e-book.pdf for a PDF.)

Perspectives
(Quarterly newsletter that addresses the concerns, reflections, and coping skills of individuals with Alzheimer's or a related memory disorder. Published by the University of California-San Diego Shiley-Marcos Alzheimer's Disease Research Center. Free by e-mail subscription or $20 for hard copy. Contact Lisa Snyder, LCSW at lsnyder@ucsd.edu or 858-622-5800 to subscribe.)

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