When Tia Powell’s mother was diagnosed with dementia, she was at a loss for how to help her. As a psychiatrist and bioethicist, she thought she could manage caring for someone with cognitive impairment. But she learned how much she did not know during the seven-year course of her mom’s disease. In that time, she came to better understand what it means to be a caregiver.
Her book “Dementia Reimagined,” published this month, also explores some of the ethical issues about care she encountered, such as whether honoring someone’s wish to remain at home should outweigh safety concerns or a caregiver’s capabilities.
The following is transcribed from an interview with Powell, who is the director of Yeshiva University’s Montefiore-Einstein Center for Bioethics. It has been edited for clarity and length.
MemoryWell: Your mother and grandmother had dementia, and you’re a physician. You’ve experienced the disease from a medical viewpoint and a personal one. How has that shaped your perspective?
Powell: For me, in terms of dementia, I had absolutely no clue how to find out about what kind of care would be good, what would be helpful, what’s not helpful, where do you find out about resources. It really pushed me to say, “Why don’t more physicians know more about this?” I’m an academic psychiatrist at a big medical center. Why didn’t I know more about normal cognitive aging, what dementia is from a medical point of view?
MemoryWell: Through your research, what did you learn about the medical history of this disease?
Powell: Obviously, dementia is not new. It’s been around forever, but until about 100 years or so ago it wasn’t carved out as an illness. Everybody who had cognitive issues was sort of lumped together. It didn’t really matter if you had depression or epilepsy or dementia or schizophrenia. We’re still differentiating. We know who has dementia and who doesn’t have dementia, but we don’t know clinically that well who has what type of dementia. That makes it much harder to figure out how can we help you.
MemoryWell: Why do potential breakthroughs in dementia prevention and treatment often turn out to be false hope?
Powell: It’s been unusually difficult to do research on dementia. The failure rate for new dementia drugs has been 99.6 percent over the last couple of decades. There’s always a high failure rate with experimental drugs, but that’s way higher than for cancer drugs or anything else.
The brain is so complicated. It’s basically a network, so it’s not that easy to say, “It’s in this location.” “Because every location in the brain is a hub and has pipelines leading to a zillion other locations. It’s very tricky to put your finger on something in a metaphorical sense and say, “Here’s where the trouble is.”
MemoryWell: You write, “This book is about how hard it is to get things right – to plan, to get the right care at the right time, to pay for that care, and to work together to find better treatments and support.” Why is it so hard?
Powell: Dementia is so scary. If you look at poll data, it’s the disease that most frightens Americans—more than AIDS, more than cancer. Why should that be? I think people feel that the way dementia unfolds it really attacks who you are as a person, taking your memory, changing your personality. But if you talk to a regular person in the street and ask them to describe dementia, they mostly talk about the final phase – somebody in bed who can’t speak or recognize their own children or husband. Although that picture describes some people at the very last phase, dementia takes 10 years or 15 to get there. The vast majority of people with dementia can have much more of a life than that. Maybe if we thought about how most people with dementia could have joy in their lives and deserve to have it, what could we do as a community and as a society to focus on that more?
MemoryWell: When your mother developed a condition called heart block, you and your five siblings declined a pacemaker that would have prolonged her life but would not necessarily have improved it. Now you’re a proponent of making treatment decisions based on a patient’s whole picture, not just a single medical problem. You say that’s a better approach to medicine. How so?
Powell: Here’s the thing: Everybody dies. And when you’re talking about a person who is going to die – and pretty soon – of a disease that offers a pretty miserable death, something like heart block – which often leads to people dying in their sleep at night – sounds actually kind of OK. The notion that anything you can stop you should stop is not helpful. It’s thinking about what you can do, not about why you should do it.
Most people with dementia, because they’re older, have more than one disease: heart disease, cancer, arthritis. They’ve got every kind of way to feel uncomfortable and very few of those things are curable or treatable, so what are we doing? I’m not saying don’t offer good care to older people or people with dementia. I’m saying we need to redefine what good care looks like.
MemoryWell: Chapter 10 of your book is dedicated to caregivers, which you call “laborers of love.” You cite studies showing that caregivers have increased rates of depression and heart disease, and shorter life spans. What can alleviate caregiver burnout?
Powell: Caregivers need to feel less guilty about getting respite if they’re the primary caregiver. I also think there can be a lot of guilt and pressure on people for deciding that it’s best for their loved one to be in assisted living or in a nursing home, and I think that’s really unhelpful. People should feel like it’s ok to say, “I may not be the best person to do this anymore.”
MemoryWell: How did you deal with being a caregiver?
Powell: It was great for us that we’re big a family [of six siblings] and we could joke and confer. We tried to divvy up tasks: Who can do the finances? Who can look into whether she needs a different facility? Who can talk to the doctors? We were lucky that way.
Stephanie Kanowitz is a Fairfax, Va.-based freelance writer, fitness instructor, mother and caregiver to her mother, who was diagnosed with dementia in 2012. Stephanie earned journalism degrees from the University of Florida (bachelor’s) and American University (master’s), and her work has appeared in The Washington Post, Washington Post Express, Red Tricycle, the Washington Diplomat and the Kveller blog.