The connection between Down syndrome and Alzheimer’s isn’t new, but the reality of what this looks like hit home for me loud and clear three years ago. “Kens Place” is the result of how this experience has shaped me. This web site along with the “Ken’s Place Foundation” will offer resources and support for those aging with Down syndrome. Not all will develop this dreadful disease, but unfortunately the statistics for the population of Down syndrome adults with AD is about 50%. Far greater then any other segment of our population, and certainly the unique segment that develops the disease at such a young age. Ken was my brother. He started showing signs of AD around age 48. He passed away due to complications of AD at 51. The story of who he was to me, the incredible way he showed up in his world and ours, how he impacted my life and the lives of so many who knew him, is depicted in a book I wrote about him.
Hello, My Name is Ken is available online, and hopefully soon in bookstores across the country. All proceeds from the book will go to the Foundation which will fund everything else related to raising awareness not only for people with Down syndrome and the incredible lives they live, but also to bridge the gap between what’s needed for care and what’s actually available to people aging with Downs. My hope is that this web site and the foundation will highlight the amazing lives of those living with Down syndrome, how much they contribute to a society starving for love, compassion and unconditional acceptance, and why we need to help them at the most vulnerable time in their lives. I appreciate funding for many organizations is dependent on the hand that funds them and that rules, policy and procedures must be adhered to for the funding to continue. However, Alzheimer’s is Alzheimer’s, and I witnessed a time when Ken was finally accepted into an adult day-care program with others who, in their 80’s had dementia and AD, and saw first hand what that did not only for him but everyone else in the program as well. More on this in a later blog.
Like the pieces of a puzzle what we need is already right in front of us. I believe we just need to find a way to piece things together so organizations can see Downs people as people first, the old belief system about people with Downs, a very distant second.