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Carol Bradley Bursack, Published July 04 2010

Bursack: Education essential to dementia acceptance

Dear Readers: Education is essential for caregivers and the public. After a recent column about people staring at our loved ones who have dementia when they behave oddly in public, I received a very helpful e-mail from Linda Wurtz, who is with AARP:

“Carol … I am just reading through my clips and found your response to Pam regarding dementia in public.

In addition to the wonderful advice you gave her, the Alzheimer’s Association … is in the process of hiring and training people to educate … any community. They’ll work particularly with people who regularly come in contact with the public such as mail carriers, restaurant personnel, drug store or grocery store personnel, and give them tips on what to expect and how to react around people with dementia.

Any group can invite them out to present at a public meeting. It makes it easier for someone with dementia to get out into the public when the public is more realistic in their expectations.”

This is great news to me, Linda, and I thank you for your input. I’m hoping that the Alzheimer’s Association can get this project publicized across the nation and their speakers are asked to present to many groups. Education can only help make everyone more comfortable.

Another suggestion: I’m often asked about support for the spouses of people who have Alzheimer’s, Parkinson’s or any other illness – particularly of the degenerative type. Currently, most of the caregiving information seems, at least to these well spouses, aimed at adult children caregivers.

There is a great deal of truth to their perception. Although the bulk of caregiving information can be used by caregivers across the board, there is far less specific information and emotional support offered to well spouses. An organization called The Well Spouse Association has been working hard to make support for well spouses available across the Internet. If you are interested, go to www.wellspouse.org and browse. You’ll find a lot of company.

I have in the past addressed well spouse needs and will continue to do so in the future. However, it never hurts one to expand networking.

Well spouses should also seek support groups offered by the Alzheimer’s Association or other appropriate agencies. Books that address well spouses and the loss they suffer include “I Still Do,” by Judith Fox and “Passages in Caregiving: Turning Chaos Into Confidence,” by Gail Sheehy. Readers can check www.mindingoureldersblogs.com for more support. You’ll find people do want to help spousal caregivers along their caregiving journey.

Bursack is the author of a support book on caregiving and runs a Web site supporting caregivers at www.mindingourelders.com. She can be reached at carol@mindingourelders.com.