Thank you, Allan, for your well crafted article that so many can relate to. As many of you note, we have an inadequate system of diagnosing, treating and supporting persons with Alzheimer's, and their families.
With the looming epidemic of Alzheimer's, drastic changes are needed and new approaches to early diagnosis and support must be implemented. There are, and will be, challenges. To all of you, thanks for the constructive conversation. Keep it going.
My colleague, Michelle Barclay, vice president of programs for the Minnesota-North Dakota Alzheimer's Association, offered the following response:
"There is tragically little funding for these interventions (support groups for early stage), and they are costly to administer. It's my belief that people need special training to lead such a group if the results are to be meaningful or therapeutic ... The Alzheimer's Association has in its strategic plan to develop more early stage support groups across the country ... over the next few years, more and more places will be creating early support groups.
"Like adult day, which was created over many years, it will take time. Adult day really did not take off in California until there was a reimbursement source. We need to figure out a way to get non-pharmacological interventions reimbursed or at least partially reimbursed for families."
A doctor I know and respect said recently, "If we accept that Alzheimer's presents only a terrible toll, providers naturally will avoid the diagnosis. If, however, we believe that it is only unrecognized and untreated Alzheimer's that causes the terrible toll, there is a reason to diagnose.
"(Without early diagnosis) you miss the opportunity to 'see' things while you still can. And you also miss the chance to design a future that accommodates your blindness. The difference is that with most other progressive diseases, you know what the problem is, where it is headed, and what you can do to maximize the time you have and minimize the adverse consequences ahead."
We need to believe that short of a cure, the benefits of early identification and intervention are substantial to those with the disease and their families, as well as to communities as a whole. We must look for ways to provide immediate access to affordable insurance options for people with younger onset dementia to ensure that they receive early diagnosis and ongoing treatment and support. We need to ensure the availability of interventions aimed at improving disease knowledge and management, promoting overall physical and mental health, delaying progression of disease symptoms, and enhancing quality of life. And we must implement a systemic education strategy for physicians/medical providers that increases awareness and reinforces the benefits and incentives for early identification.
The unfortunate part in all of this is that it will take time, yet it's important for folks like you to know that you're being heard and the problem is being recognized. For now, I support and encourage people to be assertive in getting a diagnosis and advocating for programs and funding that can change the way we think about a diagnosis of Alzheimer's.