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.
I was reading some posts from the Message Boards and saw one of your entries and your blog info. I decided to read it and what I saw was truly amazing. My husband Michael was diagnosed with EOAD at the age of 36. The problem we had in finding a place for him to go during the day inspired Connie and her wonderful staff to create the "Let's Do Lunch" program. My husband is in the later stages of the disease now (it's been 7 years). My heart soars when I read about people like you joining the crusade to raise awareness. My family appeared on The Oprah Show back in 2004, I was also on Paula Zahn Now on CNN and various other venues. I do EVERYTHING I can to raise awareness and I encourage other families to do the same. It was uplifting to "hear" someone else describe Connie Wasserman in the way you did. I tell everyone I meet what a devoted and caring person she is. I KNOW what she has done to make this program successful. Good Luck to you in all that you do and Thank You!!! My direct e-mail address is Kamicobr@aol.com if you would like to write back.
ReplyDeleteThank you for your kind words. On April 11th, the Alzheimer's Foundation of America and Sid Jacobson JCC will host a professional conference: Preparing for the Crisis: Diagnosing & Caring for People in Their 30's, 40's & 50's with young Onset Alzheimer's disease. If you go to sjjcc.org website, click on the Young Onset Symposium on the right side of the site for more details. We will continue to work hard to raise awareness and push for early and better diagnosis as well as age appropriate services. Thanks again for all you do.
ReplyDeleteHi,
ReplyDeleteI am The editor/writer with physician.com. I really liked your site and i am interested in building a relationship with your site. We want to spread public awareness. I hope you can help me out. Your site is a very useful resource.
Please email me back with your URl in subject line to take a step ahead and also to avoid spam.
Thank you,
Anna Huges
editorial.physician@gmail.com
www.physician.com