Saturday, February 16, 2008

Alzheimer's Advocates

On Memory Day, hundreds of Missouri advocates will converge on our state capitol to urge our senators and representatives to support legislation to help our fellow Missourians with Alzheimer’s and their families. On March 12, Missouri advocates will distribute copies of Alzheimer's Anthology of Unconditional Love: The 110,000 Missourians with Alzheimer's to our state legislators.

As a long-time advocate, I know personal stories make a greater impact on legislators than statistics. The book contains 37 true stories, but even if legislators read only the title, they will realize that 110,000 Missourians are living with dementia.

Many books have been written about Alzheimer’s, but this type of anthology gives a rare opportunity to show how the disease affects families from different points of view. This book brings to life the challenges of living with dementia and shows the courage of persons with dementia and their families as they adjust their lives to accommodate dementia.

Now, the Early Onset Book Project seeks submissions for a book devoted to young onset dementia. This is an exciting opportunity to educate our legislators that Alzheimer’s is a neurological brain disease and not a normal part of aging. This book will be formatted much like the Missouri book with slice-of-life stories, pictures of the person with dementia (if submitted), and informational articles.

Writers do not need to be professionals! In fact, stories written by the primary caregiver or the person with dementia are the most compelling. I will edit stories, if necessary, before submitting them to the judges. The deadline is June 30, but I certainly hope most stories are submitted well in advance of the deadline so proper editing will give them the best chance of being selected for the book.

The Alzheimer’s Association estimates that approximately 500,000 Americans have dementia that began before age 65. My vision is that the Early Onset Dementia book will make a huge impact on legislators at every state level and in Washington, DC.

One definition of advocate is, “A person who pleads on behalf of another.” Your compelling slice-of-life stories help convince legislators of the need for increased National Institute of Health research funds to find a cure for Alzheimer’s.

Are you an Alzheimer’s advocate? If you aren’t, you should consider becoming one by sharing your story with this project.