Oscar Night in Dementialand

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.

7 thoughts on “Oscar Night in Dementialand

  1. I know just how you feel, Elaine, about “finding a cure”. Yes, it’s important, but as the number of people living with dementia increases exponentially, we need to pay attention to their needs, and those of their carers, NOW.

    What if we’d never passed the ADA, and just focused on finding a cure for blindness, hearing loss, and spinal cord injury? We wouldn’t have curb cuts, we wouldn’t have beeping crosswalk signs, we wouldn’t have closed-captioned TVs! All of these technologies have improved the lives of people living with serious physical deficits,enriching their lives and giving them dignity and more independence. We didn’t just raise money for cures; we advocated for structural and societal changes that made a difference for them, for US, in the present.

    That’s what needs to happen with regard to dementia. In the Netherlands, there are “dementia-friendly” communities, planned so that people with Alzheimer’s and other memory disorders can live in safety and relative freedom. The Memory Cafe movement is gaining momentum in the US, having begun in Europe decades ago. Memory Cafes are places where people with memory loss, and their care partners, come together to socialize, to be entertained, to participate in activities, in an informal, non-judgmental atmosphere. We need more of these types of opportunities and solutions, as well as awareness of what dementia actually looks like, if we are going to support the millions of families that are impacted when a loved one is diagnosed with it.

    People can live a very long time after the diagnosis. We must eliminate the fallacies and the stigma around Alzheimer’s and other dementias, and make sure that those who struggle to remember today are not forgotten while they are still among us.

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  2. Dementia is such a horror, people turn away in fear.
    I see this with my parents and their friends and their church community and their pastor…as if dementia is somehow contagious or that dementia means they no longer need to socialize — which is untrue and a shameful, self-serving excuse for others to avoid those with dementia.
    Moreover, some of that money being raised should be used for the care and well-being of those with dementia and their caregivers…who are doing Herculean work 24/7 to keep the people they love safe and comfortable (while saving the government, via Medicaid, billions of dollars).
    Imagine no weekend, no prospect of a weekend for years on end. There is no after-work happy hour, not quick 3-day trip to the beach or even a Sunday-morning sleep-in.
    Caregiving is relentless.
    We need to acknowledge that and offer free respite, at least once a week for those caregivers in the trenches.

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  3. Thank you. As I’ve been stuck in the hospital now a title over a week, it’s been s living “Hell” – I’ve had some great nurses but no one understands me and my disease. I was told today to just “cooperate” this time when I attempt surgery again today to have them place a feeding tube… “Cooperate”. I have dementia, you’re throwing drugs at me, I’m in horrific pain & all that combined with the stress of the hospital, the staff and the reality of having to live with a feeding tube the rest of my life has put my “Brain” into shock. So that means I’m “uncooperative”?! I agree with your blog so much, how about more help for those of us living with it and knowledge about the disease instead of blaming us because we don’t fit into your “normal world or scope”. Just help us and listen to us. Please.

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    1. Grrrr. I am so sorry you are having to deal with hospital personnel who don’t seem to understand dementia. You are not uncooperative, obviously. Anyone who would use this term needs to be educated on dementia…ASAP. I am so sorry.

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    2. That’s ok. It’s par for the course and something I’m used to now. Unfortunate as that sounds – it’s the truth. I just wish it wasn’t the “norm” for me and for others. Thank you for your comment and for your articles. I truly look forward to them and the information in them. My daughter and I both share them on social media in hopes of spreading more awareness and hopefully in doing this “we” can be heard. Many blessings and I look forward to reading more. It’s nice to have someone advocating those that all ready live with it. 🙂

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