A call for change in Alzheimer's diagnosis, services

I received this piece from a reader of the blog a couple of weeks ago. The author, Allan, asked if I might share it with you. It's well written and thought provoking, so I'm passing it along to you. I shortened it, and will respond next week.

"As we baby boomers start to deal more with Alzheimer's disease, doctors must be more willing to listen to anecdotal comments by well informed spouses/caregivers ... and doctors along with local/national associations must start providing more services for those with early onset Alzheimer's and those in early stages of Alzheimer's.

My wife has Alzheimer's. Only 63 when diagnosed six months ago, she's technically classified as having early-onset Alzheimer's ... a tag given to those who are diagnosed before the age of 65. There are many day-care activity programs available to those with moderate to severe stages of Alzheimer's, and that's a good thing. However, there's virtually no support available to those with early-onset Alzheimer's or in the earliest stages of Alzheimer's.

As is true for many eventually diagnosed with Alzheimer's, my wife began exhibiting symptoms several years before the official diagnosis was made. I told doctors about her worsening symptoms at each visit, but my comments were routinely ignored. I noted how she kept asking me the same question over and over without any recollection of having just asked me that same question minutes earlier. I mentioned her getting lost while driving in our community, her disorientation, her aphasia ... but these comments weren't seen as red flags by anyone but me.

Her behavior during doctor visits didn't seem to indicate any problems — her initial cognitive testing results were good, MRIs and blood work didn't show any problems, and the neurologist suggested that the symptoms I described were probably due to anxiety or stress. When cognitive testing results worsened later on, the diagnosis became severe cognitive impairment due to depression. For many months, the recommended treatment brought no improvement ... only a worsening of Alzheimer's symptoms ... and we eventually went for a second opinion at a hospital-affiliated Alzheimer's Disease Research Center. There the diagnosis was probable Alzheimer's ... not depression.

Some of the early signs of Alzheimer's are identical to signs of depression or stress. It seems that neurologists and cognitive psychologists too often base their diagnosis and treatment recommendations solely on objective testing results after relatively brief visits with patients. This needs to change! Doctors need to give more attention to the anecdotal observations supplied by spouses/caregivers.

National organizations such as The Alzheimer's Association must also change how they provide services. They do a great job of providing support groups for spouses/caregivers, as well as day care opportunities for those with more advanced Alzheimer's, but they often provide no groups for people with early-onset Alzheimer's or in the early stages Alzheimer's.

Alzheimer's takes a terrible toll on those suffering from the disease and on their spouses/caregivers. A good first step would be to begin forming groups around the country designed to meet the needs of those who are diagnosed at a young age, and for those who are in early stages of the disease!"

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You can make a difference in Alzheimer's diagnosis, services

Allan's recent guest posting — "A call for change in Alzheimer's diagnosis, services" — is generating a great deal of dialogue and it's clear that many of you share similar feelings and experiences.

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."

My view?

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.

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