As proud as we are of our role as the largest private non-profit funder of Alzheimer’s research and as a nationwide chapter network working every day to make a difference in the quality of life for our families, there is probably nothing more important than our work to move public concern for our cause. Everything we care about – from increased funding for research to more geriatric physicians who can afford to care for people with Alzheimer’s – is possible if we move public concern. With 5.3 million people with the disease and 15 million by the middle of the century and fiscal impact that will absolutely bankrupt both Medicare and Medicaid if not checked, you might think raising public concern would be straight-forward. How then do we explain the more than ten-fold difference between the amount of Federal spending on Alzheimer's disease vs. heart disease, cancer or HIV? My experience suggests:

• There is a mostly unspoken cost-benefit analysis that rejects spending on aged people whose lives are “nearly over anyway.”

• There’s nothing cute about Alzheimer’s. It’s a hard thing to look at, with no uplifting stories by survivors. Immediately after President Reagan announced his diagnosis, the Great Communicator disappeared. 

• As a family member said to me once, “You know, it scares the bejezus out of me.” Denial is a comfortable approach.

• There is an often unrecognized stigma about this disease. It’s one thing if your backhand is less effective; it’s completely different if you don’t think as well as you used to. When my mother had colon cancer, she got to decide on treatment and went back to work post surgery. Cognitive compromise is fundamentally different. If you are diagnosed with Alzheimer’s, there are a host of jobs you can no longer do very early on.Even health care professionals often don’t want to call it by its name and consequently many of the 5.3 million Americans with Alzheimer’s will go to their graves with their families thinking “mom had dementia, not Alzheimer’s.” If you can’t call it by its name, we will play hell organizing people to do something about it. 

• Cultural differences often seriously complicate all of the above.

Now, I have several ideas about how we overcome these barriers, but for today let me sum it up in two words, MEMORY WALK!
Let’s do something about this! Memory Walk is fun, there are people of all ages, food, tribute flags, money for science, money for care, increased visibility and public awareness. It’s not too late to sign up (www.alz.org) and it certainly isn’t too late to invite people to join you. This is how we – you and I – will get this done.

Wm H. Fisher, william.fisher@alz.org