Early Onset Project: Share Your Alzheimer's Stories

The Early Onset Book Project seeks submissions for a book devoted to young onset dementia. Many books have been written about Alzheimer’s, but Alzheimer’s Anthology of Unconditional Love: Early Onset Dementia will provide a rare opportunity to demonstrate how the disease affects families from different points of view. This book will bring to life the challenges of living with dementia and show the courage of persons with dementia and their families.

Writers do not need to be professionals. Stories written by the primary caregiver or the person with dementia are often the most compelling. I will edit stories, if necessary, before submitting them to the judges who will select approximately thirty stories for the collection.

The Early Onset Project is an exciting opportunity to educate our legislators that Alzheimer’s is a neurological brain disease and not a normal part of aging. The book will be formatted much like Alzheimer’s Anthology of Unconditional Love: The 110,000 Missourians, with slice-of-life stories, pictures of the person with dementia (if submitted), and informational articles. Missouri advocates distributed copies of Alzheimer’s Anthology of Unconditional Love: The 110,000 Missourians with Alzheimer’s to all Missouri legislators in Jefferson City and Washington, D.C.

During our legislative visits at the Alzheimer's Association Public Policy Forum, Sarah Wilson of the Mid-Missouri Chapter compared Alzheimer's to another disease that affects so many people. "When a family member has cancer, that person takes chemotherapy, and the rest of the family provides support for them. With Alzheimer's, it's like the whole family is taking chemotherapy."

Those of us who have lived with dementia understand that analogy. When my husband developed dementia at age 49, advocacy and writing helped me cope. He had aphasia and could not express his feelings, so I became his voice.

Writing our experiences has a cathartic effect and helps promote spiritual healing. Once we record the events and emotion, we realize we did our best and love makes us stronger than we ever thought we could be. I have a presentation on this subject and will publish a book, Writing as Therapy: Rocks and Pebbles, in 2008 or 2009.

Your personal stories give a voice to the 500,000 people with early onset dementia and their loved ones. No one can tell your story but you. Please share a slice-of-life moment with The Early Onset Project and let your voice be heard.

For more information about submissions for the Early Onset Project, visit http://www.lsfisher.com/, or www.alz.org/mid-missouri/


To download complete submissions guidelines: http://www.lsfisher.com/projectearly.html
The submissions deadline has been extended to October 31, 2008. If you have any questions, please email me at earlyonset@hotmail.com.

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Young/Early Onset Dementia

My head is still spinning from my conversation last Friday with Connie Wasserman, Program Director of Senior Services, Sid Jacobson Jewish Community Center, East Hills, NY. Connie is a dynamic lady dedicated to improving quality of life for young onset individuals. Yes, she refers to those with dementia that began before age 65 as young onset.

Connie told me that the first time she attended a roundtable discussion about early onset dementia, half of the people attending mistakenly thought “early onset” was synonymous with “early stage.” The terms are confusing!

Early stage has nothing to do with age; it refers to the stage of the disease. In the early stages of Alzheimer’s, a person may exhibit personality changes or memory loss that affects job performance, show lapses in judgment, demonstrate difficulty remembering words or names, and could have problems handling money or paying bills.

Early onset means the disease has been recognized in a person who is younger than 65 years old. The Alzheimer’s Association estimates that 500,000 people in the United States have early onset dementia.

People with young onset dementia require stimulation to improve the quality of their lives. Connie described Sid Jacobson’s “Let’s Do Lunch” program. In addition to lunch, participants enjoy music therapy, step aerobics, art therapy, and a creative writing program. This adult day program for young people in the moderate stage of a neurodegenerative disease is innovative and carefully developed.

Connie and I share a mission to advocate for better lives for those with dementia. I have begun to collect stories for the Early Onset Project, which will provide an opportunity for those with early, or young, onset to share their stories. In addition to compelling slice-of-life stories, the book will contain informational articles. Connie plans to write an article for the Early Onset Project about their programs for young onset individuals.

If you or someone you love has early onset dementia, you will agree with Connie Wasserman that “this population is more than underserved—it is non-served.” Let’s hope the ripple in New York turns into a tidal wave of recognition and ACTION toward improving quality of life for those with early onset dementia.

To watch a video and for information about the young onset programs visit http://www.sjcc.org/
For complete submissions guidelines for the Early Onset Book Project visit my website at http://www.lsfisher.com/ and click on the Early Onset Project link.

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