Category Archives: Awareness & Activism

The Alzheimer’s advocacy organization USAgainstAlzheimer’s was featured on the “Today” show this week. Among the interesting topics discussed was Alzheimer’s image problem. It was suggested that when most people think about breast cancer, they see seas of pink with all of the walks and events featuring active, impassioned women fighting the disease. AIDS walks feature an equally impassioned group of supporters, who have not been afraid to get angry and lash out at a government that they perceived asleep at the wheel when it came to research funding. But Alzheimer’s? The news clip showed an elderly person being fed by a caregiver. While accurate, it’s depressing.

So is it time for Alzheimer’s to receive a public relations makeover?

While breast cancer awareness, AIDS awareness and Alzheimer’s awareness may seem to have little in common, there are certain common themes. Women have proven effective advocates for themselves when it comes to breast cancer, and since women do make up the majority of caregivers of Alzheimer’s patients, they could bring their outspoken compassion to Alzheimer’s awareness as well. A complaint I hear often is that the elderly seem to be castoffs in our modern society. While the initial delay in AIDS funding was due in part by rampant government homophobia, I think many Alzheimer’s advocates feel a similar sense of anger that the funding for dementia research and treatment is so woefully inadequate compared to other diseases. It does seem like we have been left behind, to toil silently behind closed doors, taking care of our loved ones as they lose their minds and dignity.

Angry activists are not always successful. They always run the risk of further alienating their pet cause. I’m not very fond of the cheap tactics sometimes used just to get media attention. But I do feel that the Alzheimer’s awareness campaign needs to evolve. How do you think Alzheimer’s advocates could better spread the word about what our families are going through and how desperately we need more funding for research, treatment and caregiving costs?

Recently, my family’s story was featured on the Alzheimer’s Prevention Initiative website. The newly revamped website features a “Read Our Stories” section highlighting Alzheimer’s Prevention Registry members and why they agreed to join. I’ve written before about this cause, so I won’t go over all of the details again, except to say this organization is building a large pool of people interested in finding a cure or effective treatment for Alzheimer’s. The more people signed up for the Registry, the more available people for future studies on Alzheimer’s disease.

Dad and I at the assisted living facility, March 2011.

While The Memories Project began as a way to honor my father and raise awareness for Alzheimer’s disease, with my mom’s subsequent battle with cancer, my focus has expanded to the role of caregivers and how caregiving can take a toll on one’s mental and physical health. Each of us with our blogs is helping spread awareness of these issues in our own way, sometimes with humor, sometimes with anger, sometimes with sadness. I am proud to be part of a virtual community of fighters and preservers of dignity for their loved ones. Keep up the good fight!