Saturday, March 1, 2008

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
For complete submissions guidelines for the Early Onset Book Project visit my website at and click on the Early Onset Project link.