‘Dementia Reimagined’ Asks: Can There Be Happiness For Those With Memory Loss?

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TERRY GROSS, HOST:

This is FRESH AIR. I'm Terry Gross. There's no cure for dementia, and there's unlikely to be one in the foreseeable future, which is why my guest, Dr. Tia Powell, is focusing on questions like, how can we devise a viable strategy to pay for long-term care? How do we preserve dignity? How do we balance freedom and safety? What is a good death for someone with dementia? And how do we help people who are losing their memory find some joy?

Powell is the author of the new book "Dementia Reimagined." She is the director of the Montefiore Einstein Center for Bioethics and is a professor of psychiatry and bioethics at Albert Einstein College of Medicine. Some of her knowledge about dementia comes from having taken care of her mother when she had dementia. Powell's grandmother had dementia, too.

Dr. Tia Powell, welcome to FRESH AIR. There is a story in your book that you tell about when your mother was taking care of your grandmother, and your grandmother had dementia. And I want you to tell this story to our listeners. It's a story about how your mother takes your grandmother outside on a beautiful day, seats her in a comfortable chair with an afghan covering her. Tell us the story.

TIA POWELL: So my mother got my grandmother out onto the porch, which was pretty difficult. She was really at the end stages of dementia and couldn't move easily. But my mother got her out there and put her in an easy chair and put her feet up and tucked in, around my grandmother's legs, an afghan that my grandmother herself had crocheted many, many years before, when she'd been able to do that kind of thing.

And after all this effort, she looked at my grandmother and said, there, Mother, how is that? - incredibly proud of her work at trying to make her mother comfortable. And my grandmother had been mute for many months before that, as commonly happens at the end of dementia. But you could see that she was struggling to say something. And she struggled and struggled and with great might pulled out a single word. She looked at my mother and said, lousy.

It hurt my mother's feelings. But for me, hearing that, I thought, wow. It was really lousy for my grandmother. And it made me think about, well, that's too bad. (Laughter). I mean, does it - I mean, yes, dementia's lousy. Cancer's lousy. Serious illness is lousy. But isn't there something more we can do here? Is there a way we could think about this? Is there a way you could help that mother and that daughter find a dementia that's maybe a little bit less lousy?

GROSS: I think that story is really important too because it shows how emotionally challenging it could be when your loved one has dementia and is not appreciating what you're doing for them. And not only that, they're sometimes, like, fighting you or insulting you as you're giving all your time trying to help them.

POWELL: Yeah, it's really tough. It's tough on all sides. Figuring out how to communicate better, how to listen better to people with dementia while they can speak and even potentially afterward to figure out, what could I do? What actually would be helpful, not from my point of view but from yours? What actually would make things better? Maybe there's nothing. But if we haven't looked, we wouldn't know.

So I think - dementia's really frightening. It's a disease that most frightens America, more than cancer, more than AIDS. And I think because of that we haven't really entertained the idea of happiness within dementia. And if you don't look for a solution to a problem, you're very unlikely to find it. You might not find it if you look. But if you look, you're at least a little bit more likely to find the answer. So for me, I think we ought at least to ask, is there such a thing as happiness in the context of dementia?

GROSS: People think of memory loss as the defining and the worst symptom of dementia. And you say it's really not the worst. So what is?

POWELL: Well, you know, worst is a personal choice (laughter)...

GROSS: True.

POWELL: ...It might be the worst for somebody. But dementia is really complicated. It's certainly not only memory loss. It's a loss of executive function, the capacity to make organized decisions. You know, you have three errands to do. Should you pick up the cat at the vet and then go to the grocery store and then drop off the dry cleaning? Or if you're doing all that on foot, is there a better order of those activities? It's something most of us just take for granted all day, every day. But if you don't have that, you can't really get around the world very well anymore. So there's that...

GROSS: But I was thinking more of the - like, the depression and paranoia and anxiety...

POWELL: Well, all of that. Yeah.

GROSS: ...And wandering. And I was wondering, like, why do - depression I guess I can understand coming along with dementia, but why paranoia? Why the anxiety? Why the wandering? Do we understand, like, the roots of that?

POWELL: You know, as a psychiatrist and a medical school professor, I have to say, I don't understand (laughter) the roots of all that. And even depression - you know, we think, well, that makes sense. It's kind of a rotten spot you're in. But being in a rotten spot doesn't actually correlate all that well with depression. You know, the rates of depression after stroke are higher than after cancer. Those are both tough spots to be in.

So, you know, dementia is a brain disease. And so is depression. And so is anxiety. Those are all things that reflect the kind of unfortunate alteration in how your brain is doing. So paranoia, you know, maybe we could explain part of it by saying the world doesn't make sense to you anymore. You're sure that you put a pencil down over here, and it's not there. Has someone moved it? Is the world against you? And it may just be, well, it was three days ago you put the pencil there - or three years ago. You don't remember anymore.

So sometimes people elaborate, you know, very complex theories about where that pencil went. But it may be more chemical than that. It may be - you know what? - the wires are crossed. It's just something is firing that is folding information that you're getting into a wrong theory of what just happened. So I think that's true for depression. It's probably true of anxiety.

Although, certainly, if we do a thought experiment and imagine a world where you don't know what just happened a minute ago and you don't know what's going to happen a minute from now, that would be - you'd be pretty anxious. It's pretty frightening. Somebody comes to you and says, take off your clothes; I'm going to bathe you. And you have no idea who this person is. What's going on here? That doesn't sound like a good idea at all. It's - It is frightening.

So I think, among other things, we need to have a bit more empathy for people in the circumstance of dementia and figure out, wow, what would I want in that circumstance? How could I - what would help me have that be less frightening?

GROSS: Your mother and your father died at the same age.

POWELL: Eighty-five.

GROSS: Eighty-five, yeah. So your father died a few years before your mother. And he had kidney cancer. Your mother was already in, I think, the early stages of dementia when he died. And so when she died, she was a widow. Her children, like you, were grown, so she was living alone. And so I think she wanted to go to an assisted living facility. She wanted some kind of social connection, but there were problems that that presented as well. So I'd liked you - as just a case study here - to talk about some of the advantages and disadvantages for your mother in an assisted living facility with dementia.

POWELL: So this is one of the hard lessons for me in thinking that as a medical school professor, I should know about all of this. I should be a real ace here. And discovering the, you know - not for the first time - that I didn't know anywhere near as much about something as I thought I did. So I thought that everybody with dementia wanted to be at home and that home would always be better, you know. And for my mother, that wasn't true. She was really miserable at home. She had an attendant who was with her all the time. They didn't get along. The attendant wanted to watch TV, and my mother didn't. She had a lifelong loathing of daytime TV, so she really was better off in assisted living. For her, it was great to be around people.

My family background is Catholic, and the assisted living place where my mother started out was part of a kind of campus where there was a little parochial school, and a church and the assisted living facility. So she could look out her window and see the little kids in their Catholic school uniforms, and I think that was a really happy sight for her. She, one day, had been a little kid in a Catholic school uniform. She'd had six kids who also wore their little Catholic school uniforms. So I think it was, for her, a kind of a thread that led back to a happy past and brought back some of that happiness for her.

But it was also hard. I mean, institutions are hard. Inevitably, they really have to fight against the tendency to evolve to serve the needs of the people who work there. So no one in this case, I don't think, did this to be mean. But things become about the convenience of the staff. So I mean, it's such a small thing, but I note in the book that my mother loved taking baths. So they told her that she could do that in the assisted living facility, but it turned out not to be true because that meant, because of fear of liability and safety issues, that a staff member had to stand outside of the partially open door the whole time she was in there to make sure she didn't drown. So they didn't have the staffing. They didn't want to do that. So they told her, forget it. That's not happening. Go take a shower.

And it was such a small defeat. But if your life is at a point where there are relatively few things that actually make you happy, why would you want to give up on such a small thing? But for somebody with dementia, really, that could be pretty big. That could be the one, you know, sort of spot of sunshine during your day. Why would you want to take it away?

GROSS: Let's take a short break here, and then we'll talk some more. If you're just joining us, my guest is bioethicist Dr. Tia Powell. She's the author of the new book "Dementia Reimagined." So we're going to take a short break. We'll be right back. This is FRESH AIR.

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GROSS: This is FRESH AIR. And if you're just joining us, my guest is Dr. Tia Powell. She's the director of the Montefiore Einstein Center for Bioethics and the author of the new book "Dementia Reimagined: Building A Life Of Joy And Dignity From Beginning To End."

So one of the problems your mother faced - and I think this is typical of people who are in assisted living or in nursing homes in the latter part of their lives - is that she had to get transferred several times from assisted living to the emergency room or to the hospital, you know, back and forth. And it ends up being a downward cycle. And you talk about how stressful that is for patients in general, but maybe particularly for people with dementia. Why is that more stressful for people with dementia?

POWELL: Yeah. So when you take a frail, older person with dementia - and most people with dementia are frail elders with lots of other medical illnesses and, you know, arthritis. And you're 85. And it's really uncomfortable to lie on that gurney in the cold. You get to the emergency room, and let's say you have pneumonia. Well, there's also a guy that just came in with a gunshot so you're going to wait. You're probably going to wait for hours and hours. That's certainly true in most crowded, urban emergency rooms.

And you have no idea what's going on. It's really dangerous for you. You're probably kind of raised up in the air and lying on a gurney. Well, it's a nightmare for everybody if you fall off. So you know what? They probably have to restrain you. And people can't really necessarily be with you all the time. Maybe they've contacted your family, but maybe they're not there yet. Or you're there for 10 or 12 hours, and they got to pick the kids up at school. They can't be there the whole time.

It's an awful thing. If it's an awful thing that will really bring you benefit, OK. That's what medical treatment's like. You know, it hurts when I give you this shot, but if it keeps you from having a terrible disease, OK. That's what we're going to do. That's a good tradeoff. Lying for hours and hours before you get help and then maybe getting help that's going to be complicated, you really have to ask, what's the balance here between burdens and benefits?

I think we need to plan better. I think doctors need to be better about communicating. I think family members and people with dementia need to be better about educating themselves. It's a fatal illness. It comes to an end. And dealing with that straight up makes it more likely that you have a comfortable end.

So maybe if you're in the end stage of dementia and somebody says, she's got a fever, I think she has pneumonia, maybe the answer is to say, OK, then that must mean we're at the end. Why don't we stay here - wherever here is for you - make sure you're comfortable. Maybe they can give you antibiotics in the assisted living facility or at home with visiting nurse. Maybe they can't. But unless somebody says, if you do this, I know I can get something really good for you then I'm not sure we should do it. And right now, the standard conversation is, we have to do this. She has pneumonia. She's got to get out of here. She's got to go to the hospital.

Well, show me how that helps. You know? I think for a lot of people, we go to great effort to provide them with miserable deaths. And I don't think it's the best use of our technology. And I'm not even talking about the money part of this, although it's very expensive to provide those miserable deaths. I'm just talking about getting people what they want.

GROSS: So what is the stage of dementia in which you think maybe you shouldn't go for the hospital of pneumonia care, maybe it's best to just stay at home or in the facility that you're in and get some antibiotics, if you can, and just be comfortable? Are you talking about, like, the very, very end stage or, like, where? 'Cause that's such a difficult judgment call to make, and the patient can't really make it because they're cognitively impaired.

POWELL: Dementia, you know, like all diseases, it's been carefully studied and broken up into - by doctors into different stages. So there's an end stage of dementia where there's various criteria. So at that point, the person is likely to be completely bedbound, cannot get up out of bed by himself or herself, may not be able to swallow, probably cannot at all or not very much take in food by mouth, is unlikely to be able to speak, probably doesn't recognize the people that they love and is likely to have a general deterioration, can't walk, can't do lots of things, is incontinent. So that's the final phase. For me and for a lot of people, the important thing then is to say keep me comfortable. We can't fix dementia. There's no cure coming. And most - many people who have that final stage of dementia may also have other diseases that are also rattling along towards a final conclusion. They may have end-stage heart disease, a form of cancer. There's lots of other comorbidities. They're very common with that end stage of dementia.

So for me, personally, I think I do have a voice. I can make an advance directive saying, guys, I get it. Dementia can be fatal. When I'm at that final stage, absolutely, please give me comfort care. It's not no care. It's - don't do anything for me. It is very aggressively do everything you can to make sure that my end is comfortable.

GROSS: So you're saying it's helpful if you're in the early stages of dementia to write a good advance directive for what you want in the final stages. How do you know you're in the early stages of dementia? 'Cause I think that a lot of people who are over 50 or 60 or 65 or in their 70s think that they're in the early stages of dementia because they don't remember things as well as they used to, but not remembering things as well as you used to is a standard sign that you're getting older. It doesn't necessarily mean you have dementia. And, you know, so how do you know?

POWELL: Right. So there is absolutely normal cognitive aging. If you really want to know if you have dementia, you can go talk to a geriatrician or - if you're at the right age for that - or get cognitive testing. But, really, it has to do with function. Can I still do my job? Can I still handle my finances? And if you're unsure about that, by all means, get tested, consult somebody. Now, here's where I feel medicine has kind of fallen down on the job. Unfortunately, there are still doctors who think it's not right to make the diagnosis of dementia even though they know that's what's happening. We can't cure it. They figure, why upset people?

Listen; I'm, in my day job, a bioethicist. The information that has to do with you is your information. You have a right to know it unless you say it's too scary for me, don't tell me, tell my son. You really have some plans to make. So you can get - you should be able to get a diagnosis from a doctor. And if your doctor gives you a fishy answer, get a better doctor.

GROSS: You strongly believe that since there is no cure for dementia. And there is unlikely to be any in the near future. And even if there was, a lot of people have already started to develop it, whether they're symptomatic or not, so the cure would maybe be too late for them anyway, so we'd better find ways - like, better ways - of dealing with the long process of dementia. And you're hoping that we'll be able to find ways that can add some joy or increase the joy of people who have dementia. And we're not talking about, like, end-stage dementia. We're talking about the steps toward that end stage. What are some of the things you've been thinking about that can add some joy in life even if you're losing your memory and things that you're thinking, like, you'd like to have if you end up having dementia?

POWELL: Well, music is one of the great things. The part of your brain that deals with music - man, that thing is built to last. It really (laughter) stands up to dementia. So that's why there's a wonderful program developed by a man named Dan Cohen called Music and Memory where he goes around to nursing homes and tries to build playlists for people with dementia and in nursing homes. And when you play that music, if you get the right song, people really can kind of just perk up. They really look happy. It's such a small thing. So one of the thought experiments that I do in the book is I make a playlist for myself, you know, and I've got Aretha on there. I've got all my old favorites. And it's music that now makes me really joyful. And that's my best guess for the kind of thing that might help if I really go to the land of dementia. Here's something that I might be able to pack up and take with me.

And there are other things like that. I love the natural world. I love gardens. I'd love to figure out if there's a way that I can just be outside and kind of looking at plants and birds. That just makes me happy. It always did as long back as I can remember. So although I may change, my guess is that I'll still be like that when I have dementia. And small things like that can make a difference.

GROSS: My guest is bioethicist and psychiatrist Dr. Tia Powell, author of the new book "Dementia Reimagined." After a break, we'll talk about the dilemma she faced when her mother had dementia. Should she be given a pacemaker to prolong her life? And Justin Chang will review the new film "The Souvenir." I'm Terry Gross, and this is FRESH AIR.

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GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to my interview with Dr. Tia Powell, author of the new book "Dementia Reimagined." She writes about issues pertaining to long-term care, preserving dignity and helping the person with dementia find some joy. And she reflects on the question, what is a good death for someone with dementia? Powell is the director of the Montefiore Einstein Center for Bioethics, and she's a professor of psychiatry and bioethics at Albert Einstein College of Medicine.

So as we were discussing earlier, your mother and your grandmother had dementia. And the doctors wanted you to decide whether your mother should get a pacemaker. And this was a really big and important decision. And I'm sure a lot of our listeners have been through this or will go through this. Your grandmother had a pacemaker when she had dementia, and you had a lot of second thoughts about that. What went wrong with your grandmother having a pacemaker?

POWELL: My grandmother had six kids. My mother had six kids. (Laughter) When my grandmother had six kids, the doctor approached them and said, she has dementia and she has heart block. She has to get a pacer. And they went, OK. And they all regretted it. And I think she did, too, to the extent she was capable. She lived way into her 90s. I think she was 97 when she died. And she was really uncomfortable. Her last years were pretty miserable. And I think all six of my grandmother's children thought, we shouldn't have done that to her, and we certainly don't want that for ourselves.

GROSS: They shouldn't have kept her alive to just experience discomfort on the way toward death?

POWELL: Yeah. It was basically extending a process of dying and of misery that was hard to treat. So all of my - mother and all her five siblings basically thought, please don't do that. Don't do it to me now. Don't do it to me later. So my mother had been super clear. But, you know, she started getting these funny episodes, and a cardiologist came and said, this is so great. We have a solution. She needs a pacemaker. And I am also one of six kids. So, you know, six kids, 14 opinions. Everybody thinks they know what's best. And we had a big debate about, could you do a pacemaker now, while my mother seemed fairly comfortable, and shut it off later?

And that's not as easy to do as it should be. Cardiologists can be very picky about pacemakers. They really carve out a special status for them, saying, it's just this little thing. It's just a tiny little piece of machinery. It doesn't hurt anybody. Why don't you just leave it on? Why, why? You know, nobody needs to die of heart block. But it's - to me, this is a real problem with medicine. That is an idiotic way of looking at it, an idiotic way pursued by many really smart people (laughter).

But basically, if you're going to die and somebody says, you shouldn't die of this, who are they to say that? Maybe the this that's on offer is way better than the that that's facing you in the future. And that's really an issue with dementia. It's not, frankly, a great way to die. It's a slow death. And for most of us, a slow death is not a recommendation.

So I think the pacemaker decision was really a tricky one for us. But we decided it wrongly. My mother actually fixed it. The cardiologist came. And she said, what are you doing here? And he said, I came to take you for a pacemaker. And she basically said, get away from me, young man. You know, I mean, you guys do too much stuff to old people. Get away. I don't want a pacemaker. So she took care of it.

GROSS: So why is it so hard to turn off a pacemaker - ethically hard, (laughter), to turn off a pacemaker in a patient who is actively dying of dementia?

POWELL: I think it's a psychological issue. It is, in fact, technically unbelievably easy to turn off a pacemaker. You just sort of wave a little wand, in effect, a kind of magic wand, and it shuts down the batteries and the thing has stopped. And it doesn't impair the natural functioning of your heart. It's, you know, it's just - you know, just shut the thing down. It's easy, technically, to do. But I think doctors have this notion that they are goalies. I'm on goal, and if I'm a cardiologist, nobody gets a shot on cardiology. You know, you're not going to die a cardiac death. And that makes me a good doctor.

It's, however, an incredibly foolish notion. A person is not a heart. A person is a complex entity with lots of things going on. And if death is, you know, at the doorstep, I don't know that the doctors get to take a vote and say, you know, which is the exit door. It should be up to the person, to the extent possible, and it should include thinking about not what we can't do, but what's the benefit of that and what are the burdens of that? What should we do?

And I think this is a conversation that's going on now in medicine, but it's not as routine as it should be. Doctors are uncomfortable with it.

GROSS: They'll be afraid of being sued, also. Right?

POWELL: They're afraid of being sued. But, actually - of course, that's the reality, but I don't actually think that's the most powerful lever here. I think the most powerful lever is some kind of understanding that, I should prevent death, and here are the kinds of death that I can prevent so I'm doing my job if I stop that.

GROSS: I think the feeding tube question has become a big and profoundly difficult question for families of people who have dementia. And first of all, explain, like, why do people in final stages of dementia stop being able to eat or swallow?

POWELL: Right. So dementia is a brain disease, as we said earlier. It's not just memory. It has physiologic effects. Your brain is the control tower of the whole operation. And as it deteriorates, you're not going to be able to walk. You can't get your balance. You can't move your legs when you tell them to. You don't even remember to tell them to. You don't know how to do that. And that's true of all of your muscles, including the ones that control swallowing. So the vast majority of people who make it all the way to the end of dementia will have difficulty swallowing, something like 98 percent. So that's pretty tricky.

The interesting thing is, over decades, we have gathered really incontrovertible evidence that a feeding tube in end-stage dementia certainly does not increase your quality of life, but it actually doesn't even increase the duration of your life. So I think the GI doctors who put in feeding tubes in and the nursing homes that prefer them, frankly, because it takes less staff time to hang the nutrition from the feeding tube, you know, they're not really actually looking at this in terms, I think, of what's best for the patient.

GROSS: Well, let's take a short break here, and then we'll talk some more. If you're just joining us, my guest is Dr. Tia Powell. She is the director of the Montefiore Einstein Center for Bioethics and the author of the new book "Dementia Reimagined." We'll be right back after a break. This is FRESH AIR.

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GROSS: This is FRESH AIR. And if you're just joining us, my guest is Dr. Tia Powell, director of the Montefiore Einstein Center for Bioethics and author of the new book "Dementia Reimagined."

A lot of health care is determined by where are the profits and where are the losses. And you say some nursing homes are getting out of the long treatment business and moving instead to short-term care. What are the financial reasons behind that?

POWELL: So Medicare, which is the government health plan that takes care primarily of the elderly, pays better than Medicaid, which is a state and federal kind of partnership program that helps pay for care for the poor. So weirdly, we've decided that long-term care should not be covered by Medicare, the program for the old, but should be covered by Medicaid, the program for the poor. OK. So that's, on the surface of it, kind of an odd idea. And the long history of how that came to be - I think people were terrified that if we covered long-term care insurance for everybody who was older, everybody would need it, and it would break the bank. I mean, breaking the bank - we certainly don't want to do that but just sort of not giving people a way to pay for the help that they need does not prevent people from needing that help. So we have kind of a major blind spot in our health policy globally. And we are, as far as I can tell, not in a likely situation to fix it.

But what it means is that a lot of nursing homes are closing. A lot of nursing homes are going out of business. And the ones that are staying in business, particularly the for-profit ones, are generally shifting away from long-term care, which is compensated at the lower Medicaid rate, and just doing the shorter term care, which sort of ends at 100 days that's paid for by Medicare. So if you go into the hospital and you're older than 65 and you need a little bit of rehab, you know, sort of get back up on your feet, you were lying in bed for two weeks, now your muscles are all weak, you need some physical therapy and some other stuff, you can get Medicare to pay for that shorter term stay in the nursing home. And they can stay afloat doing that. It's a lot tougher to stay afloat if you really cover that long-term care that somebody with real advanced dementia may need. And it's a problem because we need long-term care.

You know, we have a situation now where there are a lot of older people. Maybe they're both, you know, 85. One has dementia. The other one's also 85. And they're trying to keep that person at home. And, frankly, sometimes it's dangerous. Sometimes it's really bad for both of them. It might be better if we could get that person safely into a good and comfortable nursing home. But unless they give up all their assets, unless they go on Medicaid, unless they can get a facility that accepts Medicaid, they may not be able to do that. So it's - we're in a tough spot here.

GROSS: But that's the thing. A lot of people who are middle class choose to become poor in order to qualify for Medicaid so that they could be in a nursing home that they otherwise wouldn't be able to afford.

POWELL: Yeah, but that's a dwindling option. So Medicaid budgets make up a big chunk of a lot of state budgets. And the states are trying to drive down that Medicaid budget. So even though lots of people in the middle class are trying to become poor and to qualify for Medicaid, the state is sort of chasing that cycle and saying, no, no, no, no, no, we're going to make it harder to qualify for Medicaid. We're going to have fewer beds available to pay for Medicaid. We're going to try and keep more of you at home. Some states have good programs that try to help keep people safely at home, and some do not. And in some states even with good programs, there are not enough of them to go around. So we have more and more people trying to jump into the lifeboat of Medicaid, and the state is trying to push them right back out into the waters. We've got an ugly situation, which is likely to get worse because more and more of us are getting older. Our population is aging.

GROSS: Of course, there's the option of home health care aides, but, you know, the paradox there is that it's extraordinarily expensive to have a home health care aide on a daily basis. And a lot of people really need it on a daily basis. And even if your spouse is there, if your spouse isn't strong enough to lift you out of bed and get you to, you know, a commode or a bathroom, you need help. You need somebody who's going to be able to do that. But the aides are paid as if they're totally unskilled and not respected. On the other hand, you pay a fortune to hire them. And the difference is usually, like, the agency that is hiring the aide and that you're working through to get the aide, they make - I think they make a fairly decent profit. But the people doing the work, from what I can tell, are very underpaid, and they don't get any benefits. So, like, that's the - that's a dilemma that I don't see anybody trying to fix.

POWELL: There are some people working on it, but I don't think that - no one would argue that we have fixed it. By the way, I don't find it so unskilled. I don't know if you've ever had the occasion to try and get somebody who's agitated, who's bigger than you, into a bathtub, onto a toilet. It takes some real skill. And...

GROSS: Absolutely. And you have to know how to do that to a person without, like, dislocating their shoulder. I've seen people do such a...

POWELL: Or yours.

GROSS: Or yours. I've seen people do such a kind of terrible job knowing - and I know, like, they're really hurting the person. But a really good home health care aide who's experienced and has some training can do all that without causing any harm.

POWELL: Yeah. I mean, this is a really big issue, and it's kind of a scandal actually. There are many, many people - the vast majority of them are women. Many are women of color. Many are immigrants. This is not - it is hard work. This is low paid work. This is not work, by the way, that Americans who are citizens are lining up to do, saying, yes, I absolutely want to get the agitated older person into the bathtub and have them punch me in the face while I do it. It is really tough work. And the people who do it well are geniuses. They are really just Jedi masters of kindness, of intellectual and a sort of emotional intelligence. So there are some groups that are doing that. There are a number of groups who are looking at how do we support wages? How do we either do unions or figure out how to guarantee minimum wages? You know, for a long time, home health care agencies were exempt from paying minimum wage to their workers. There are other people who offer jobs to people without an agency to make sure that whatever they're paying - the family - all of that money goes straight to the worker. A lot of that goes with cheating on taxes and Social Security, so it was very tricky.

We need more really smart people to think about how do we get good people doing this work. And how do we use them and deploy them most efficiently and most effectively to get, you know, safe and comfortable living arrangements that are great for the person with dementia and their family and the people doing this work?

GROSS: So when it comes to writing an advanced directive, a living will, what advice do you have so that it's specific enough so that people really know what you want and that they don't have to have, like, long family fights interpreting a vague directive?

POWELL: Right.

GROSS: Of course, you don't necessarily know what you're going to be dying of when you write your advanced directive.

POWELL: Yeah, the advanced directive is the best we've got. But it's actually not a great invention. (Laughter). It's - there's no informed consent. You're asked to comment on stuff that - you don't know what things we're talking - we don't know what intervention we're talking about and what the risks or benefits are. So the best plan is to record your goals and your values. Unless there's some specific treatments that you think you're likely to need, I wouldn't get into the specific interventions because as soon as you write a list of 20 things, we're going to invent something the next day that's not covered in your list, you know?

So if you know what's sort of maybe heading your direction, you know, fine, comment on that. But I wouldn't get too caught up in the specific interventions. I'd focus on what it is that you're hoping to accomplish. And that, for me - and, you know, I work with these - we work with these all the time in our hospital.

The best directive is the one that focuses on the goals. What is it that you're hoping us to use the tools of medicine to get to? And that, I think, is really important. And it's great to have that conversation. You know, it's a hard conversation. But it's actually a lot harder to not have it. You're much more likely to get the end that you would prefer than if you pretend it's not coming and let somebody else set the thing up.

GROSS: So this is a tough question to answer now. But since your mother and grandmother had dementia and you're concerned about the possibility of having it yourself in the future, you have two adult children. What role would you want them to play? What role wouldn't you want them to play in your health care if you get dementia?

POWELL: Well, the last thing I want is really to ruin the lives of my children. And it would be horrible to me to think of my two kids who are, you know, really kind of loving adulthood and, you know, working at work that's hard and interesting - I don't want them to quit their jobs and take care of me at home. That would be, for me, the worst possible outcome. I don't want that. I don't want to be alone. So I'm glad if they have to - can they help manage my care? Can they keep an eye on me? Can they make sure I'm doing OK?

But I don't believe in taking prisoners. I think we have to get away from the notion that particularly daughters need to kind of give up everything and go take care of their parents. That's honorable work. I admire the people who choose to do that. I think we should make that choice possible. I don't think that we should shun and embarrass people who think, that's not right for me. That's not the right choice for my family.

GROSS: Dr. Powell, I want to thank you so much for talking with us.

POWELL: It's been a real pleasure. Thanks so much for having me.

GROSS: Dr. Tia Powell is the author of the new book "Dementia Reimagined." After a break, Justin Chang will review the new film "The Souvenir." This is FRESH AIR.

(SOUNDBITE OF DANIEL FREEDMAN'S, "LOVE TAKES TIME") Transcript provided by NPR, Copyright NPR.

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