How to Live a Joyful Life after a Dementia Diagnosis

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Show Notes

Learn about Dr. Powell's new book, Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End, at her publisher's website.

Read more from Dr. Tia Powell at her "Dementia Reimagined" blog on the Psychology Today website.

Transcript

Nathaniel Chin: I'm Dr. Nathaniel Chin, and you're listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Nathaniel Chin: Welcome back to Dementia Matters. I'm here with Dr. Tia Powell. Dr. Powell is a professor of psychiatry and epidemiology and the director of the Montefiore Einstein Center for Bioethics. Her bioethics expertise spans public policy, dementia, end-of-life care, and decision making capacity. Her new book is Dementia Reimagined, Building a Life of Joy and Dignity from Beginning to End. In it, Dr. Powell details the cultural and medical history of dementia and Alzheimer's disease. Thank you, Dr. Powell, for joining us on Dementia Matters.

Tia Powell: It's a pleasure to be here.

Nathaniel Chin: Well, to begin, what brought you to study dementia?

Tia Powell: Really my mother brought me to study dementia. Today would be her 93rd birthday. Just coincidence that we happened to be speaking today. She really was the one who brought me toward the study of dementia. My mother had dementia. Her mother had dementia. And so I watched my mother care for my grandmother. And then later my siblings and I also cared for my mother. It's also true that as a psychiatrist and bioethicist, at a certain point, and really as my mother became ill, and after she died I started … you know, you lose your parents, you realize you're the adult now. And I began to think about what haven't I done in my work? And I really felt that at least as far as I knew in psychiatry and in bioethics, my two fields of specialty, I didn't think the questions I wanted answered were being asked. And so that really made me want to think more about dementia and what else we need to know and do to provide better care.

Nathaniel Chin: In your book you mentioned that it should not be exclusive care and cure, that we would actually need both of them. And if we're not going to have a cure or at least for the Baby Boomers, what should people developing dementia or currently living with it really hope for and expect.

Tia Powell: So that's a really good question. And I think this is where medicine has not really succeeded. I've had a number of people who have called up looking for advice -- they have a relative or they themselves have recently been diagnosed with dementia, including at really advanced academic centers; and the only help that is offered, or the main help that is offered is, Well, I could enroll you in a study, or I could start you on these pills that might help with symptoms a bit for a while. But the questions that people are asking -- Is my home okay? Should I be driving? Can I still work? How should I manage my money so I don't make mistakes and be victim to a scammer? All of those questions are not specifically medical. And I think it's there that people are really desperate for better information and better advice. So I think those are all questions I would ask people if you've had a diagnosis of dementia or someone you love has had that, to really think about, what do you think will make you both safe and happy over the next 10 and 20 years? So think about where you're living. Is it accessible? Is it safe? Is there a way that you can be outside and still be protected? How about the stairs? How about bathing? All of that kind of stuff. So I think there are a lot of non-medical questions that are helpful to ask.

Nathaniel Chin: And some of those fit into what we would call advanced care planning, or at least be proactive preparation for frankly any of us as we get older. And so I'm wondering, if you're worried that you or someone you might love has dementia or brain changes, what are some practical steps that you would recommend for people to help prepare?

Tia Powell: I would do a couple of things right away. Actually one of the things that I've come to be particularly worried about his money. Dementia takes a long time to develop, and a lot of people, including actually doctors, often think of the very end phase when they think about dementia. They think about somebody who is really bedbound and frankly quite close to the end of their life. But dementia takes a long time to develop, a decade or more, and most of that time you're out and about, you're in your life, you're often in your home. A lot of people who are older, including people with dementia, are subjected to financial scams. So actually I think some financial planning is one of the best things you can offer somebody in the beginning stages. If you have savings for retirement, how can you protect those so that if somebody calls you up and in involves you in a scam where they say, oh, you're having trouble on your computer -- which by the way is true of 100% of older Americans -- and I can fix that right away, all you have to do is give me your bank account number. You want to be able to set up retirement funds so that you can't make a mistake and release them to people who are quite actively trying to get them across the country. Talk to your bank. If you have a really trustworthy relative, can you have alerts put on your banking so that nobody can steal your bank card or steal your identity and get access to it? That would be one thing. I'd think about how are you going to get around. Are you in a place where you really need to drive, how are you going to deal with that? That's really much less safe once we have dementia. People with dementia are between two and five times more likely than someone else who is the same age to get into a car accident. So how are you going to do the things you love to do? How do you get around? How do you make sure what money you have is protected? A number of practical tips like that I would start with.

Nathaniel Chin: And where do you recommend the people that contact you or the people in your clinic? Where do you recommend they go for resources? There's so much on the Internet nowadays. And what do you consider to be trustworthy and helpful?

Tia Powell: This is a really important question. There is a lot of unreliable information on the Internet. So I would start with large organizations. You probably have a local Alzheimer's chapter number one, no matter where you are. In New York and California, that's complicated because there's been a split between the Alzheimer's Association and local groups. But if you do any of those large groups, they should be able to connect you with local resources who are reliable. So you may want to talk to area group on aging. You may also want to go through your faith community; they may have some activities that are appropriate for somebody who's older. I would stay away from advice about supplements. There are a lot of scams out there about cures for dementia – “This is great.” “The doctors won't tell you this.” “I have this magical thing.” I really can't say strongly enough that you don't want to get into that kind of stuff. If somebody says the government is unaware of it -- I know there are a lot of people who don't trust the government -- but I think on this issue, you're better off with them.

Nathaniel Chin: In your book, Dementia Reimagined, you talk about being happy while living with dementia. What does that mean?

Tia Powell: Well, when I say that, a lot of people really look at me as if I've lost my mind, so I have to really say, you know, bear with me, hang in there with me. I do know that dementia is hard. I do know it's a fatal illness. I'm a physician. My mother had dementia; my grandmother had dimension. I do know what it really is. At the same time, I really reject the notion that it's all horrible all the time. As I said earlier, dementia takes a long time to develop. There's a whole decade there where we could really focus on living and not just dying. If we were more accepting of people in our communities with dementia, I think there could be a lot more joy for people with dementia. And I think if we started thinking about that in dementia, you might be able to think of more ways to be happy. What are some activities you can do that will still work for you and still bring you joy even if you have less cognitive capacity? If you like reading, can you adapt that? Can you read easier books? Could you have somebody read to you? Could you read children's books to somebody else? Like little kids in your community and an afterschool programs? Can you get a dog? A dog gets you out, gets you walking, and other people in your community talk to you when you have a dog, they stop and they pat you cute dog and then you had a conversation with someone that day. So I'm not looking to deny dementia; it's really tough. But that's the easy part, saying that dementia is tough. Saying, How could I figure out some way to still live and still flourish and still have joy be a part of my life -- as it should be a part of every life -- how can I do that? So that's the conversation I'd like to start.

Nathaniel Chin: And in essence, what you're suggesting though, is that in addition to doing this advanced care planning, thinking about safety, thinking about finances, thinking about your home, also doing a reassessment of what matters to me. What does living a good life look like, and how do I do that now?

Tia Powell: Yeah, exactly. How do I do it now and what are some things I can think of that I could keep doing? I think we sometimes focus too much on the losses of dementia. And even in health, you know, we doctors are sometimes guilty of spending too much time saying what you can't do -- stop smoking, stop eating fried foods. It's not really in our portfolio, but you know, we hope you live longer. But what I really hope for is to live better. I'd like to be happy. And really making room for that to be part of the conversation of dementia I think is really important. So that's what I hope to do.

Nathaniel Chin: And you said something that I think is important, which is not to minimize the experience and the difficulties of dementia. And what I find in my clinic is that there's a lot of grief. Dementia is a different type of condition because you're grieving from the time you're diagnosed, or even the time you start worrying that there's something wrong. And so in this model that you're suggesting, where does grief fit?

Tia Powell: Grief is always with us. I'm a psychiatrist. Grief is part of living. Grief is part of every minute and you can face life that way. You as a parent, you know, as a mother, I can say I'm farther away from my child every day since the moment she was born. Okay. That's a true statement. That's not really where I want to go. That's not really the message that I want to give my children. So I think the same is true of life in general. Life is full of sorrows, that we know. The game is, and the way to sort of win life, is not about money, it's not about being a Kardashian for me. It's about how you find happiness. How do you, knowing that, you know really seriously, our two choices are you get older or you die. Probably for all of us both, you know? Okay, that's true. This is not a really helpful, you know, approach to things. So what can we do? What can we think to make today a good day, and what can we do so that as we go forward, we'll have more good days. And it's not about being a hedonist or a narcissist. Actually you're better company for other people if you're having a good day. So part of it can be about making it a good day for you, for your community, for the people you love. And there's nothing selfish about that. Quite the opposite actually. So that's really the core of my message.

Nathaniel Chin: And knowing what you know about the disease and with your history of seeing it with your mother and your grandmother, what are you doing in your own life, either to, I don't want to say prevent dementia because I know what you've said in your book, but how about just prepare for getting older and the possibility of dementia?

Tia Powell: Right. So I think as you said, there are some practical things you can do. You can't do anything about your genetics, so that's as it is. I do think there are modifiable factors that make you more or less likely to get dementia. And although this is controversial and the science keeps changing, there are few things that really stand out that looked pretty good. So it looks like diet makes a difference. And I would say if you can kind of not change everything but move your diet in the direction of the Mediterranean diet, there's really pretty good data that supports that. So that means more fresh vegetables, more fruits, less meat, certainly less preserved meats, and a lot of things that you know, probably your grandma could have told you it would be more healthy for you, less fried foods. I don't, when I say healthy diet, I specifically don't mean supplements. I was very cheered up when the FDA just recently set out a dozen or more letters to supplement companies who were claiming, oh this can prevent dementia. Don't you believe it. Spend your money on a pair of sneakers, because the other thing that you could do that's really good is fitness. That's also really tricky. I think particularly when you tell an older person they have to be more fit, it's very intimidating. So we're not saying you have to be an Olympian; you have to find something that actually feels pretty good that you can do that is sustainable for you. So it might just mean walking around your block. It might mean that there's a little park in your neighborhood -- if you could get there most days in a pair of comfortable shoes and even just get there and sit on the bench for a little while and then come home, that might be the right start for you, and that might begin to make a difference. That also gets you outside where you can talk to your neighbors, and then if you don't show up one day and maybe people will notice and they'll come and look for you. So I think small changes like that are good for you. But again, I also think it's really important to be happier. So the things I do are try and think about what will help me as I get older. I know that isolation is a huge problem for older people with or without dementia, so I'm trying to really work on maintaining my social connections on not being so lazy, so send an email or call an old friend just to see how they're doing. The other thing I did that was really hard for me, really embarrassing, is my family started teasing me about my hearing. So my kids would say, you know, you are answering a question that is completely different than the one I just asked you. So it turned out, without realizing it, I was reading lips. So I actually went and got hearing aids. I was really annoyed, I thought this is just humiliating, this is terrible. And still I'm like a cat, you know, who you are trying to put a ball gown on. However, hearing loss is a huge impediment to social interaction, and because a lot of people feel bad about it, they don't correct hearing loss and then they stop going to their weekly poker game or they stop hanging out with people or they get embarrassed, they can't participate in the conversation. So I'm trying to do that now and make sure that that doesn't get in the way for me.

Nathaniel Chin: You also mentioned in your book having a dementia music playlist, because music is so integral in our culture and in our life. Are there certain songs that you think of that bring you joy that would be on that playlist?

Tia Powell: Oh, absolutely. I have a whole playlist and actually the one in the book I sometimes add to it, you know, but there are definitely songs that I really love. One that's actually not on the playlist in the book, but that I just really love. I had, I'm kind of a tough day at work one day last week and I got in my car and I plugged in my phone and whenever I do that, I don't know why it does this. It immediately goes to, I'm playing music, you know, it sort of takes the music off my phone and it came up with Domino by Van Morrison. And so, and it just like blasted out. The music was incredibly loud with Domino, and it totally cheered me up. So I think for you it might not be Van Morrison, it might be somebody else, but music sticks with us. Music actually long after language interestingly is a cognitive function that is maintained even in people with pretty advanced dementia. So stay with music. Really, some people are fabulously musical, but almost everybody can be affected by music. It's just a wonderful avenue into emotion and to connection with other people and into joy. So I'm really into music. I think that's a great way for people to sort of find a way to put some happiness into your own life and to that of older people.

Nathaniel Chin: Well that's wonderful. And with that I'd like to thank you for being on our podcast, Dementia Matters, and we hope to hear from you again.

Tia Powell: Thank you. It was really a pleasure. Have a great day.

Nathaniel Chin: Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health, and the Geriatric Research, Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's disease centers. This episode was produced by Rebecca Wasieleski and edited by Bashir Aden. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. Check out our website at adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.