CUSWF's Health and Wellness Book Club Selection

Why was it important to you to write this book?

After my mother’s diagnosis of dementia, I just was struck over and over again by how little I knew: even in the context of being a physician and a medical school professor. And I just kept thinking if we—six adult kids, everybody trying hard—if we’re having a hard time, how much harder must this be for lots of people who aren’t as medically savvy, or don’t have siblings or other family members that they can crowd-source the problem to? It made me feel like I wanted to collect the information I wish I’d known.

Given the fact that so many of us do have a personal connection, how does the stigma and misinformation surrounding dementia persist?

I’m also a psychiatrist, and this is a pervasive problem with mental health issues as well. There’s the burden of the actual disease, and then there’s the huge additional burden of the societal bias and prejudice. There are senior living facilities where the people who are living there don’t want to see anybody with dementia, they don't want that person coming to the dining room anymore, because they realize that could be them. And it’s so unempathetic. But there’s a long history of this. So many caregivers of people with dementia say, “We don’t actually get invited to dinner anymore; we’re not part of the community supper club.” But wouldn’t it be a better society if we were more inclusive of people with dementia? And people with other disabilities? Because many of us are going to cross that line. That’s going to be us! 

For a while, my mother would say: “Please be patient with me, I have Alzheimer’s disease.” 

Some people with dementia do preserve a kind of social genius and social skill and it’s very humbling. They often are able to do what we should have made much easier for them. And I’m not trying to paint a rosy picture, but I find incredible dignity in people with dementia. And we need to give them credit and work with that. 

In Dementia Reimagined, you actually talk about planning ahead for your own dementia. I applaud you for writing this section in the first person, because it immediately made me realize that I too need to begin asking myself those questions. 

I think it had to be an “I” voice. If I’m going to say, “Get over yourself, start planning for it, think about it”—I should step up. It’s very hollow to make virtuous recommendations for other people that you have no intention of following. It’s really not persuasive. 

The other thing is, as a psychiatrist, I take the view that we have some difficult conversations because it’s much less difficult to have them than to avoid them. You may think you’re doing yourself a favor by not thinking about dementia, but if you don’t do it, somebody else will be forced to make those decisions for you. And there’s no way somebody’s going to perfectly intuit what you might have wanted.

And the general rule, in the US in particular, is directly contrary to what most people say they want. You ask most people what kind of care they would want with advanced dementia, and they say, “I want to focus on comfort.” But US law says, “Unless you tell me to quit, I have to keep throwing everything at you.” Which is directly contrary to what most people say. 

In your book, you describe the history of how we have cared for people with dementia in this country not only in recent decades, but for the past few hundred years.

I wanted to understand why we are where we are and also to rid people of the notion that in some rosy earlier time, families always circled around their elders, Mom stayed home, everyone was happy, and that was a lovely, earlier time. Actually, not so much. It’s also a women’s issue. When people say the family provided care, it’s typically the women who drop everything and care for their grandma or their husband’s grandma. I’m not saying that’s wrong, it’s a beautiful choice, but that doesn’t mean it was a lovely rosy time. 

It’s a tricky, complicated question. People in Asian cultures are really grappling with this. The long-held tradition of caring for elders in family is coming up against very high rates of education and more and more women working outside the home. So how are we doing that? How are we reckoning? Is it always wrong to have a nursing home? What more can we do to help keep frail elders at home?

Let’s talk about care versus cure. Why is it easier, in this country, to talk about research toward a dementia “cure” than it is to get the conversation going about improving dementia care? 

This fits within some larger problems in the US health care system. We love to invest in acute care medicine, in advanced science and research, and that’s all to the good, there’ve been wonderful advances. But weirdly, our health care outcomes are worse than other nations with advanced economies. And why is that, when we spend so much more on acute care? There’s a book called The American Health Care Paradox (Public Affairs: 2013), by Elizabeth Bradley and Lauren Taylor, that explains why: it’s because we don’t spend nearly as much on social services. Things like meals on wheels, visiting nurses, helping people stay safely in their homes: those things have a huge impact on health outcomes. 

We’re spending so much money on finding a cure. And I am confident it’s not coming for the baby boomers. It’s certainly not coming for anybody who has dementia today. And that message does not get out.

People with cognitive impairment need a team effort to look at: how do we support your overall health? In a way to maximize your joy in life, the number of days you’re going to have living the life you want? What services are available in your community, and when you might need them? Let’s make a plan for you. And let’s have a great social worker to put that together. We could fund ten geriatric social workers for the cost of a PET scanner.

By the way, the first adult day health program in the U.S. started in Chinatown in San Francisco. It basically was about people not wanting to put their elders in nursing homes, but instead to keep them safe during the day (while they went off to work). They could still live at home and have dinner with the family. 

I do think it’s important to do research for our kids and their kids. At some point, it will be important to know exactly which type of dementia somebody has because there may be things we can do, and that will be the time for biomarkers. 

But we have a lot of people with dementia in this country who aren’t getting enough to eat. And that’s unconscionable. I want to use some money for that. Let’s start there. 

Ann Hedreen is a writer, filmmaker and teacher. Her memoir, Her Beautiful Brain, won a 2016 Next Generation Indie award. Ann’s writing can also be found in 3rdAct Magazine and other publications. She is just finishing a second memoir, The Observant Doubter.