Beyond Discouragement, Towards Hope

May 9, 2016

There was a sense of relief that I was able to name what was going on, but there was also shock at my entire life changing within a few moments.”

If someone you love has faced an Alzheimer’s diagnosis, no doubt you’ve heard them express something similar to what that writer posted online not long ago. A dementia diagnosis can trigger a flood of conflicting emotions; the feeling of isolation in particular can feel overwhelming and even paralyzing, making it more important than ever for mom or dad to feel connected, supported, and encouraged. The truth is that a diagnosis of dementia doesn’t have to mean an abrupt end to a fulfilling and purposeful life. John Zeisel, author of I’m Still Here: A New Philosophy of Alzheimer’s Care and diagnosed with the disease himself, writes that what’s “most important [is to] not accept the common view that Alzheimer’s is always and only bad news. It’s [about] embracing life, rather than fearing loss.”

There’s lots of support out there to help guide people past the initial discouragement towards hope for a happy and meaningful life post-diagnosis. Here are some resources we like:

  • The Alzheimer’s Association offers a packet of information and contacts for the newly-diagnosed, including educational materials, 24/7 helplines to call, and info on joining early-stage support groups. Many local chapters also offer early-stage social engagement programs  that bring members together to stay active and connected.
  • The Dementia Action Alliance is a vibrant online community dedicated to living a full life with dementia that’s meaningful and without stigma. Their National Resource Center pulls together the latest blog posts, books, videos, and online support centers with lots of helpful information and ideas.
  • Based in Woburn MA, the I’m Still Here Foundation offers operates on a mission to offers group activities to engage, stimulate, and enrich people diagnosed with cognitive impairment. Participants attend lectures, symphonies, movement classes, and visit museums, and can get connected to partner organizations like Dementia Adventure that lead group excursions for people with early-stage dementia.
  • The United Kingdom Alzheimer’s Association has a fantastic online publication Living with Dementia that’s free and full of lots of helpful ideas for a vibrant life post-diagnosis.
  • The National Center for Creative Aging is a fantastic resource for family members hoping to help their loved one with dementia live fully. Their activities and exercises are accessible on any computer, tablet, or smart phone, and are super engaging and interactive.
  • It’s often through helping others that we help ourselves: that’s the premise behind the Alzheimer’s Association Early Stage Advisory Group, an organization entirely made up of people with early-stage dementia asked to advise on advocacy, programming, and other initiatives. These advisory groups are a wonderful way for people to give special purpose to their diagnosis. Potential members can submit their applications here.

Want more information? An early-stage support group at Northwestern University’s Alzheimer’s Disease Center has put together a wonderful booklet for the newly-diagnosed; you can access it here.