A little over a week ago, Julianne Moore accepted an Oscar for her role in “Still Alice,” a movie about a woman with younger-onset Alzheimer’s disease. She made the following statement in her speech:
“So many people with this disease feel isolated and marginalized and one of the wonderful things about movies is it makes us feel seen and not alone. And people with Alzheimer’s deserve to be seen, so that we can find a cure.”
I loved it. Except for the last seven words.
People with Alzheimer’s deserve to be seen. Period. Because all people deserve to be seen.
Don’t get me wrong. Finding a cure for Alzheimer’s is an important goal. We absolutely need to find a cure because the social and economic costs of not doing so are just too staggering. I continually advocate for more resources for Alzheimer’s research. I certainly don’t think we put too much emphasis on finding a cure. However, I do think we put too little emphasis on improving the lives of people who have all types of dementia today.
We’ve seen increased funding for Alzheimer’s research, and I cannot express to you how excited I am about this. Yet, we still write people off after a diagnosis. We give up on their quality of life as we renew our hope for finding a cure so future generations don’t have to deal with Alzheimer’s.
When we acknowledge people with Alzheimer’s, it’s often to put them forward and say, “Look what Alzheimer’s does to people. We don’t all wanna be like this. We need to find a cure.” It’s somewhat of a scare tactic. And maybe that’s okay, to some extent. But it’s only part of the equation.
Let’s acknowledge people with Alzheimer’s and ask what we can do to be more supportive of them and their families. What changes can we make to create a more dementia-friendly society? How can we educate people (from cops to nurses to bus drivers) to provide better services for people with dementia? What can we do to help community members learn to positively interact with people who have dementia–whether those people are friends, family members, or just individuals who need a little bit of extra time counting their cash when they’re ahead of you in line at the store?
I recently spoke with a man who is currently caring for his wife with Alzheimer’s at home. He told me that last year a large group of family and friends participated in the Walk to End Alzheimer’s in his wife’s honor. I told him I thought it was great that so many individuals were supporting him and his wife. He sighed.
He explained that he didn’t want to sound ungrateful because he was humbled by how much money they raised and how they designed and wore purple t-shirts in her honor, but that the same individuals were hesitant to come over because they were so uncomfortable around someone with Alzheimer’s. Very few of them talked to his wife like she was an actual human being if they did stop by for a few awkward minutes. They had little understanding of the disease but a lot of fear.
He tells me that everyone says they are praying for him. Long pause as he tries to find the right words. He is a nice guy and doesn’t want to seem negative. He says he appreciates prayers but what he really needs is someone to stay with his wife for an afternoon so he can run some errands.
“It was great that they all turned out in purple for the walk,” he told me. “But they don’t get it.”
He wants people to see his wife. Not because that will help us find a cure. But because all people deserve to be seen. And our society is falling short in seeing people with Alzheimer’s and other types of dementias.