Orien Reid Nix is a baby boomer with a family history of dementia. She is also Chair of Alzheimer’s Disease International.
Last week, she gave a keynote address at the Wisconsin State Conference on Alzheimer’s Disease and Related Disorders in Milwaukee. In her talk, she focused on the devastating effects of Alzheimer’s on baby boomers, both as they care for their elders and as they develop their own memory problems.
Ms. Reid Nix was accompanied by her aunt, Corinne Reid Owens, a civil rights activist in Wisconsin. Ms. Owens is 95, and does not have Alzheimer’s. But several of Ms. Reid Nix’s family members, including her mother, had the disease. In her speech, she talked about the challenges of caring for her mother while still caring for her children – a common situation these days. Estimates of the number of Americans in the “sandwich generation” run as high as 20 million. There’s even a new term, “club sandwich generation,” to describe people who are caring for three generations.
Ms. Reid Nix talked about some of the joys of caregiving, but also about the personal pain and societal costs of caring for people with Alzheimer’s:
* stress, fatigue, and health problems
* family tensions
* economic hardship
* $148 billion (direct and indirect cost of care in the U.S.).
These costs are increasing as the baby boomers age and the number of people with memory loss, Alzheimer’s and other dementias grows. The Alzheimer’s Association now estimates that 10 million baby boomers will develop Alzheimer’s, with an additional 4 million developing other dementias.
There’s growing recognition of this looming problem, but not a lot of solutions. Efforts to delay the onset and progression of Alzheimer’s could help ease the overall burden by reducing the number of people needing care, particularly in the late stages of Alzheimer’s when the most care is needed.
The ballooning number of people with Alzheimer’s and related dementias is not just an American problem. Alzheimer’s Disease International (ADI), the federation of 77 Alzheimer’s Associations from around the globe chaired by Orien Reid Nix, predicts there will be 81 million people with dementia by 2040.
In her speech and in a separate email discussion, Ms. Reid Nix talked about how ADI and member organizations are working to serve baby boomers, particularly those with memory loss. Although she acknowledged that ADI doesn’t always move as fast as people with dementia might like, the organization is taking steps to involve more people with dementia in its work.
“We firmly believe in and are committed to giving a voice to people with dementia,” she says, “and we attempt to integrate them in every aspect of our work. We are proud to have had two people with dementia serve on the ADI Elected Board. Their voice has been central to our deliberations. At each of our annual international conferences, people with dementia have participated as plenary speakers and workshop leaders.”
She notes that in consultation with people with dementia, ADI member organizations in New Zealand, Australia, the United Kingdom, Scotland, Canada and other countries have developed specific programs for people with dementia.
We baby boomers like to think we’re different than previous generations. We want to deal with memory loss in a new and better way. Baby boomers with caregiving experience, like Orien Reid Nix, along with those who are experiencing their own memory loss, can help us shape a new approach.