Support For People At Genetic Risk For Alzheimer's - Alzheimer's Association Offers Call-in Support Group

Main Category: Alzheimer's / Dementia
Article Date: 16 Oct 2008 - 7:00 PDT

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Time, travel and other life issues often keep people from seeking information and support, according to the Alzheimer's Association. For those reasons, they are starting a call-in support group for siblings of people with early onset Alzheimer's disease. Sometimes called "young onset," this type of Alzheimer's occurs in people under age 65 - sometimes as young as 35. As awareness increases and diagnosis improves, increasingly more people are realizing that they are at risk for what is a fatal disease.

A person with early onset Alzheimer's may actually be in any stage of the disease - early, middle or late. Each stage is characterized by different symptoms. Symptoms range from mild confusion in the beginning of the disease to the inability to swallow, talk, and move on one's own in the late stage. While more than 5 million people in the US have Alzheimer's, an estimated 500,000 people in their 30s, 40s and 50s have it or a related dementia.

This first effort by the Alzheimer's Association to provide a telephone-based support is open to anyone with a sibling who has early onset Alzheimer's. Since the early onset disease has been shown to have genetic links, siblings are not only directly affected by the illness within their family; they are also at risk themselves. The continuing support group will run for eight sessions, by phone. Attendance will be limited in order to allow discussion.

"It's a kind of double jeopardy that is especially difficult emotionally," said Betsy Percoski, Vice President of Communications and Public Affairs at the Association's MA/NH Chapter. "And when multiple siblings develop Alzheimer's the toll is enormous. We are reaching out to them in a way that we hope will make information and resources more accessible."

To kick off the call-in support group, the Alzheimer's Association is hosting a free tele-education event on Wednesday, October 22nd at 7 p.m. The guest speaker will be Dr. Richard Mayeux, MD, Professor of Neurology and Epidemiology at Columbia University, Director of the Sergievsky Center, which is devoted to the epidemiological investigation of neurological diseases, and the Co-Director of the Taub Institute for Research on Alzheimer's and the Aging Brain at Columbia University Medical Center. Dr. Mayeux will talk about genetics and risk of Alzheimer's disease and his work with siblings of people with young onset Alzheimer's. He will also take questions.

The phone event is free, but space is limited and a pass code is required to participate, so preregistration is required. For those interested, call the Alzheimer's Association at 800-272-3900 to reserve a space and receive the toll-free number and a pass code to call in to the talk.

Information about Alzheimer's is available at www.alz.org/MA.