Q. My 52-year-old brother has been diagnosed with Pick's Disease. As a result, he is now living with my elderly parents. They do quite well with him, with the help of myself and his other siblings. Can you suggest any activities he can do?

All he does is watch videos and plays games on the computer. He seems very emotionally flat. He was an extremely intelligent man who has 2 degrees and was a high officer in the Air Force. The only programs I can find in our area are for mental illness and he doesn't qualify for their services. I have found a lot of information about what the physical illness of this disease is, but no clues on how caregivers can take the best care of these people. Do you have more information on this?

A. I can imagine how difficult this has been for you, your brother, and your parents. For readers who may not know, Pick's Disease is a degenerative disease of the brain that causes a syndrome called dementia. It has some similarities to the much more common Alzheimer's Disease, but also several differences; e.g., Pick's Disease affects a more localized region of the brain, and is often associated with more behavioral disinhibition than seen with Alzheimer's.

For example, patients may become more aggressive or impulsive. On the other hand, apathy is also common with Pick's, as seems to be the case with your brother. Unfortunately, there are still no effective treatments for the underlying disease process. However, there are many things that caregivers can do, both to help the afflicted loved one, and to help themselves cope with the considerable stress of care-giving.

One Japanese study made use of what is termed procedural memory in order to match the Pick's patient with the appropriate type of activity. Procedural memory refers to knowing how rather than knowing what--for example, knowing how to tie your shoes is an example of procedural memory. The researchers involved (Ikeda et al, 1995) describe several patients for whom the return to an old interest or hobby led to improvement in behavior.

For example, one severely disturbed woman calmed down considerably when she was encouraged to do knitting, which had been a favorite hobby of hers. I wonder if there might be some activities your brother could enjoy that call upon some of his procedural memory--for example, since he was in the Air Force, might he enjoy building model airplanes? This is just an example--you would know your brother's interests far better than I.

Perhaps equally important, I would encourage you and your parents to get involved with a support group in your area that helps families dealing with cognitively impaired loved ones. Contacting the Alzheimer's Association chapter in your area (www.alz.org) or the National Council on Aging (www.ncoa.org) would be a good start. They may also be able to direct you to available services for demented patients, such as home nursing assistance.

For more specific information on caregiving for Pick's Disease patients, try logging on to the Pick's Disease Support Group website (http://www.pdsg.org.uk/articles/caregiver.htm). This has dozens of caregiver stories that may help you see this illness from the perspective of those who have been there. There are no magic answers provided--but a good deal of support.

June 2002

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