Weaving a Richer Tapestry of Alzheimer’s Disease

In recognition of National Alzheimer’s Disease Awareness Month, I’m focusing on eliminating the stigma of Alzheimer’s and changing the stereotypes associated with the disease. This week, I want to encourage anyone else who has been diagnosed with Alzheimer’s to join me in going public.

At the time I got my diagnosis, I was the head of a major university in Denver. I was a public figure. But though I resigned from my position a few months later, I didn’t “go public” about the diagnosis until eight months after the diagnosis became official.

Later that year, I went to a dinner sponsored by the Alzheimer’s Association where a man with Alzheimer’s spoke. He inspired me to realize that I could do the same thing: I could be helpful to others in my condition, and I could continue to be engaged in justice work, even if that work was just to fight against the stigma that Alzheimer’s carries.

Shortly after that dinner, I was to be awarded the first-ever “Knoebel Prize” awarded by the University of Denver’s Knoebel Institute for Health Aging. (I had championed it’s establishment when I was DU’s chancellor). As my husband and I drove to the event, I told him I might disclose that I had Alzheimer’s. My husband said simply, “Make sure you are ready.”

The banquet took place in the beautiful open auditorium on the top floor of the Daniel F. Ritchie School of Engineering and Computer Science at DU. The ceiling looks somewhat like a mosque, with beautiful architectural lines leading the eye upward and magnificent light pouring into the space. The room was packed with friends from the Institute. The program began with the awards, and I received the first of the two awards. The center’s director said kind words about me as one of the founders of the Institute, gave me the award, and invited me to say a few words.

I stood up that night, looked at a group of people I knew would be supportive, looked up to the heavens, and put away the remarks I had prepared. I explained why DU had created the Institute and how very proud I was of its work. I explained that when the Institute started, I didn’t realize I would so soon be a possible direct beneficiary of its educational and research mission. I explained that I had been diagnosed with Alzheimer’s and while it had taken me a while to share the news publicly, that night and that crowd made the right moment to do so. Everyone stood. Many were crying. I asked them to sit. I went on to talk about the need for research, for policy change, and, equally important, the fight against the stigma of Alzheimer’s. I pledged myself to this cause.

I knew that in however many years I had left, I had to work against the stigma, to do all I could to make sure doctors were testing and diagnosing this disease, to support the research and to actively work for policy change. That commitment is one reason I’ve written a book (due out next year) and am posting blogs like this about what it means to live with Alzheimer’s.

What I came to realize—and what I hold on to very tightly—is that when I vowed to work for the cause of research, fair treatment, and education, I was being true to myself. I was engaging in social and intellectual involvement just as I had done my entire life.

And that’s the most important message I want to convey during this National Alzheimer’s Disease Awareness Month. The diagnosis does not change who we are. Being labeled as someone with Alzheimer’s does not sentence us to living on the sidelines, ignored by society, until we fade away.

My hope is that someday there won’t be a stereotype of what it means to live with Alzheimer’s. Yes, as of now there is no cure, so most of us expect to end up losing our memories and become dependent on others for our care. But that’s only the end of the journey. Along the way, our lives are going to be as varied as the rest of society. I hope others will share their stories so we can start weaving a richer tapestry of what it means to live with Alzheimer’s disease.