Aging in Place: Addressing the Challenges of Living Alone with Dementia

Transcript

Intro: 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.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. It's estimated that 4.3 million older adults across the United States live alone with cognitive impairment, representing roughly a quarter of the total number of older adults experiencing mild cognitive impairment or dementia. With such a significant number of people living alone with limited to no support, how do these individuals navigate the challenges and concerns that arise due to these memory and thinking changes? What recommendations are there to support them as they continue living independently? Joining me to discuss this is Dr. Elena Portacolone, a professor of sociology in the Institute for Health and Aging at the University of California, San Francisco, as well as a Pepper Center scholar in the Division of Geriatric Medicine. Dr. Portacolone is the principal investigator of the Living Alone with Cognitive Impairment Project at the University of California, San Francisco, which focuses on enhancing the well-being of people living alone with cognitive impairment in the United States through research, identifying best practices for aging in place, and developing public policy recommendations. Dr. Portacolone, welcome to Dementia Matters.

Dr. Elena Portacolone: Oh, thank you. Thank you very much. 

Chin: In the start, how did you get involved with aging research, and how did this specific project focused on those aging and living alone start for you?

Portacolone: I've been just interested in aging because I just felt a strong affinity towards older adults. I don't know exactly why—maybe because I was raised a lot by my grandmothers. I focus on living alone for different reasons. One, my mentor, Sharon Kaufman, who was an anthropologist, asked me to focus on big phenomena, to look at big trends and also to look at big research questions that could make a really big difference if addressed. Also, another mentor, Margaret Lock, another anthropologist, shared with me and others that it's really important to follow our passions. Then on a personal note, I observed myself. I lived in a household with six people—me, my two brothers, my parents, my grandma–in Italy and I lived with six people until I was 26. Then I moved to the United Kingdom and I suddenly started living alone. I could feel the big difference—positive as well as negative—about living alone. I've been living alone now for 30 years, mostly, and so there's been a lot of reflection about that. Also, my father—he died alone while he was living alone in London because during the week he was working in London. He was commuting from Italy to London. He had an asthma attack in the night when he was 49. That also—unconsciously, it took me many years to realize—that also pushed me to better understand how to support older adults who live alone. A combination of many factors. Also, when I started doing some interviews as a PhD student, I noticed that some older adults started sharing with me their challenges, and they told me that they were not sharing their challenges with the social workers or with clinicians. I started to say, wow, this is really—and the challenges are really big. These are the different reasons that led me to studying living alone in old age.

Chin: There's a lot of intersection there and a lot of personal experience. Thank you for sharing that. Based on what the research has found so far, who is more likely to live alone when it comes to having cognitive impairment?

Portacolone: Yes, this research comes from the Living Alone with Cognitive Impairment Project, which is a project funded by the National Institute on Aging and the Alzheimer's Association. I involved epidemiologists in order to find these numbers and understand who are these persons. We started the process. We know that, thanks to the work of Maria Glymour and Jacqueline Torres, there is an estimated 4.3 million older adults who live alone with cognitive impairment in the United States. The majority are women—older women—and they are often renters and poor. Of course, they are often widows, divorced, or never married. Also, communities of color are often living alone with cognitive impairment. We needed to consider that one-third of older adults in the United States—of adults aged 65 and over—live alone in the United States, so about 16 million people. This proportion increases with age. For example, 42 percent%, so almost half of women over 75, live alone. This percentage increases as we get older for many reasons like increased longevity, childlessness, the fragmentation of family. Now you can see that cognitive impairment—which includes mild cognitive impairment to advanced dementia—increases with age. There is not a treatment to reverse cognitive impairment. You can see—building from Sharon Kaufman—the trend. I could see the trend in my first research where I interviewed 49 older adults living alone in San Francisco. For me, it started becoming normal that they were forgetting my visit. They were forgetting that I had already met them. It was getting normal. Then I realized, what? This is not really normal. Then I looked at the literature—and that was 15 years ago—and I realized that very little was known about living alone with cognitive impairment in old age, even though it's such a difficult enterprise. Then I said, wow, this is really something I need to focus on, so then I focused my research program on this population. And I rightly saw, because the more I started spending time with these older adults, the more I could see their incredible challenges—sometimes insurmountable challenges—to live alone in old age here in the United States.

Chin: I do want to go there because I think that's so important. It's hard to live alone in general, but of course with cognitive impairment, I would imagine it's even harder. What challenges are you seeing in individuals living alone with cognitive impairment? What are they experiencing? What are the things you're learning in your research?

Portacolone: Yeah, I think maybe before answering that question, I think it would be just good to reflect for a few minutes on what it is to live alone, because for some of us, it's something new. Living alone means that, okay, you've got a lot of independence. Nobody's checking on you often. There is this immense freedom, and it's actually quite exciting. Also, there is a lot of responsibilities because then you have to pay the taxes, pay the bills, pay rent or mortgage, and take out the garbage, the mail, deal with neighbors—good or bad—understand who you want in your home, who you do not want in your home. Whether to rent a room or not, the heating expenses, whatever. I'm just giving you a list. Oh, what to eat tonight? Nobody's cooking for me. Where do I get the food? Where do I buy the food? All these actions are quite easy to do in our adulthood or young age. When we get sick—or say even, I remember in my 30s, I couldn't use my hand because of a big cut—I said, oh my god, I can't do the dishes, I can't do anything, I can't go shopping. At the time there was no Instacart. Then, like one of my early mentors, Eric Klinenberg, said in his book Going Solo, about living alone in general, some mundane—using his words—challenges, something that is mundane when we are young, then becomes really insurmountable in old age. Then imagine with cognitive impairment. Imagine—with cognitive impairment—it is hard. The first thing that gets really hard is managing money, managing bills, managing the mail. Also understanding how to go to doctor's appointments, managing appointments, understanding who to trust, who not to trust. These are the daily—and often the challenges are so big that the older adult living alone with cognitive impairment just focuses on the daily. They say, okay, I just can focus on the day. The big one, the big challenge is, okay, is this situation sustainable? What am I going to do next? They're just too big of questions to fix often after a person develops cognitive impairment. I noticed many times the participants often told me about some plans—to rent a spare room to a nurse or to move to an apartment with an elevator. The impairment was already advanced, and they often didn’t realize how advanced it was. That impairs thinking abilities to make big decisions, as well as putting ads on Craigslist, if you live in San Francisco. That's really the main challenges. The other challenge is also not knowing that one has cognitive impairment. I have a quote of a Black woman—she was referred to my study because she had a diagnosis of mild cognitive impairment, but the doctor didn’t tell her about the diagnosis, which has been common in my participants. She said, “I have a hard time remembering now. I really hate that. That’s tearing me apart. I don’t know what to do about that.” In her case, she was going to the library to understand what was going on with her because she couldn’t understand it. This theme of “I don’t know what to do about that,” that’s really the main theme. It is very representative of the interviews with over 100 persons living alone with cognitive impairment in urban and rural U.S.—in California, New Orleans, and in Detroit. There is this constant uncertainty of not knowing. Not knowing what to do. Across different socioeconomic status also. Very affluent participants told me the same—this is a quote of an affluent participant, a former lawyer living in a really wonderful condo overlooking all of the Bay of San Francisco. We diagnosed Alzheimer's disease, so she knew about the diagnosis. She said, “I realize how difficult it is for me to manage myself, and I don’t know what to do about it.” Then she asked me, “I don’t have a good sense of where I’m going, because I don’t know where I’m going. You see, how much worse is it going to be?” Super educated woman living alone in the heart of San Francisco.

Chin: Sounds like there's a lot of uncertainty and a lot of insecurity in that. It's amazing that they shared that information with you. As I think about my own memory clinic, the definition of someone with dementia is someone who needs assistance with their activities of daily living, the things like managing medications or finances. To live alone and to not have that ability to have someone assisting you—you can see how that would be not very disconcerting and very troublesome and worrying just inherently now because they technically would need that assistance. Now they don't have that and they wouldn't know where to go and what to do about that. I guess, as some of our listeners, Elena, are clinicians. For our clinicians and health care professionals that are listening, what questions should they be asking their patients who live alone to better understand their situation and to identify these areas of need so that they can help their patients who live alone?

Portacolone: Yeah, thank you. Before I answer that question, I would also like to add that there is often the presumption that family members will help or that caregivers are available and the reality is that yes sometimes there is the super invested daughter who totally understands her mother or father and she's super organized and creates a good system but that is really the exception. For example, in the case of the affluent woman in the beautiful corner overlooking the bay, she was a recent widow and she didn't have children but she had siblings. There was not really great interaction among them. The Black woman who was going to the library to understand what's going on, she has a daughter., and I spent time with the daughter. The daughter couldn't realize that her mother had a cognitive impairment. When her mother was arriving late to meetings, she was getting angry with her mother. What I'm trying to say is that the caregivers often do not have investment, the time, or there is not emotional alignment or they are far away, different continents, states, whatever. We have to drop this notion that the caregiver will help the person living alone because living alone is the signal that the caregiver is afraid, with exceptions of course but often that's the case. It's a marker of that. Building on what professionals, clinicians, and other professionals can do, well, number one is that it's really important to establish a deep trust, to establish a therapeutic alliance with the patient who lives alone with cognitive impairment. It's–as you probably know better than me–it's a very big effort. It's a majestic effort, because it's really important to acquire the trust of the person living alone with cognitive impairment. Often a big fear of these people is that the professional may evict them, evict him or her or them. There is considerable fear around interacting with professionals so really acquiring the trust–I managed to acquire trust quite easily because I kept on visiting the person many many times, so the more I was visiting them the more they trusted me. Also I'm not a clinician so they knew that I was not going to intervene unless they were in really terrible situations. I would intervene,. I did intervene in those situations. There is this tension between being able to intervene and gaining the trust. On top of that, the professional here in the United States, we don't have many services to support this population. It's really hard for professionals to support this population once the person lives alone and they don't have reliable caregivers and they have limited resources. It's very hard. I don't have a magic wand to fix it. I noticed that the Program of All-Inclusive Care for the Elderly can make a difference for some participants and I think that the solutions really go base by base because a major problem here in the United States is that home care aides, who are an essential resource for these populations, are only available to older adults who are eligible for Medicaid. According to our epidemiological studies, only 21 percent of older adults living alone with cognitive impairment are eligible for Medicaid, which leaves the majority, 80 percent, not eligible for publicly subsidized home care aides. It's really a major crisis. I don't want to be dark but that's why I am here. I'm committed to this work because it's an unsustainable situation. I could see that it was so unethical that I started going abroad to understand what is happening in other countries. For example, in Denmark, if a person lives alone and has a diagnosis of dementia, they receive public home care aides on the spot within a week and I actually visited Denmark with a bike in Denmark. I paired a home care aide, we went, I saw how she assisted these persons., and I worked with colleagues in Japan. In Japan, if you live alone and have dementia you receive services upon diagnosis. Nothing is perfect but at least it's something. Here in the United States we're really struggling and the result for professionals in desperate cases is to call Adult Protective Services but often Adult Protective Services do not have a solution. For example, I interviewed 72 professionals of different specialties on how to support a person living alone with cognitive impairment and what is the difference of living alone when serving people with cognitive impairment. An APS manager said, the challenge for me is trying to access services for him or her if they don't have family. That's the hardest part because then we have to get the community involved and coordinating that can sometimes take an act of God. That's APS.

Chin: Yeah. I mean, what you're saying to me, Elena, is it's important for clinicians to identify it, to recognize it when possible. 20 percent of the time, get resources, Medicaid. When not, still be available, still find opportunities and resources, or at least be on the lookout and be vigilant. Find those opportunities when you can help. There's not a lot there. Maybe as a clinician, maybe we're checking in more often. Maybe we're finding those opportunities to bring people back sooner, but there's not a lot.

Portacolone: Yeah, there is actually a light in this situation, which is the Guiding an Improved Dementia Experience, which is a national model that was launched by the Center for Medicare and Medicaid Services last July. It's a demonstration program that will last for eight years and is still going, which is great. The goal of GUIDE, Guiding an Improved Dementia Experience—the goal of GUIDE is to provide additional financial resources to providers, to clinicians, and to support people with dementia and their families. It's a great program and it's mostly focused to support caregivers and people with dementia living with others. The living alone component is not that well developed but could be. It's a good avenue is to look at what is going on with the Guiding an Improved Dementia Experience. I'm not sure whether providers can still enroll in the program. I think the rules have been changing so I'm not sure. If you're enrolled then you can highlight any modifications to the program to support people living alone with dementia, so that's a really good avenue.

Chin: Then how can someone be successful living alone with cognitive impairment? What should someone be doing either now prior to having cognitive impairment or, if they do have it,? What have you learned through your research or are successful techniques to do the best you can living alone with thinking changes?

Portacolone: The ideal is to get organized sooner, very very soon, if we develop cognitive impairment. It's just important to plan, to really do really good planning with our finances and making very big decisions in our 60s or 70s. That is the time to move to a place without stairs, a place nearby shops, nearby groceries, a place maybe with a spare room or, if we are affluent, we have maybe a spare studio. Now is the time to find someone we trust to start helping us with groceries, maybe even a young couple or a family. Then we start creating a really strong support network. Maybe now is the time to make really important discussions with adult children or niece, nephews, and other younger generations within our family or our support network. Say, well, I may need help and in exchange for your help I'll give a portion of my inheritance if it is possible. It's really important to be extremely strategic and to make decisions really, really soon, much sooner than we think. Then once we get older in our 70s, 80s, then all of these big decisions are really hard to make. Unfortunately, as we get older the likelihood of developing some chronic disease increases, such as cognitive impairment but also cancer, diabetes, you name it. Our energies wane and our network, especially people in our cohort and older cohort, also wanes. For me that is the best solution. If we live alone and we develop cognitive impairment, then same as I said but within concerns, having clear discussions, which often is very difficult, and sharing vulnerabilities, which also is very difficult, and making sure that our resources—our money matters—are as much in order as possible, and finding a really good physician or geriatrician–even better a geriatrician—as an ally. Creating these therapeutic alliances with professionals, but therapeutic alliances can mean many things. To feel safe, to do our best to feel safe. Again, I don't want to be too dark but one of my participants, her plan was that she was very organized. Another affluent woman, super organized, and she organized her death by suicide and she was successful. That was her way to take care of herself. 

Chin: Do you feel like as things become more automated or we have more of these services that this might change though? I think to myself, whether it's before or after cognitive impairment, I know many of the things that we are describing as functional abilities these days can be hired out. For instance, auto pay for your bills or cleaning services or meal delivery services. A lot of our chores can be done by others or even with AI these days, there's just so many ways that a person can use technology or other services to get some of these daily things done. Are you seeing any of that in your research, people? I know it's probably more the affluent populations but are you seeing people hire out when they live alone with cognitive impairment, having other services come into their home to take care of some of those things?

Portacolone: In my research, I didn't notice it much but yes, it's a very important resource for us. Building on my answer before, now is the time, and I'm doing it personally. I start using Instacart if I don't feel well. I use Instacart or I use other systems where people shop for me or quick deliveries and I don't use it all the time. I say, well, I needed to understand how all of this works, Uber Eats or whatever. Now that you refresh my memory, yeah, one participant living alone with cognitive impairment and cancer, he automated everything. We're talking about five years ago or even six years ago, and he had a system. He started using Instacart and UberEats at the time, so he did it. For example, he had a plan to move to an apartment with an elevator but he never managed to realize that. He just became more and more impaired, especially with cancer. Cancer was really what debilitated him the most.

Chin: Elena, one of your earlier answers, you'd mentioned that sometimes you actually had to get involved when a situation felt dangerous. I'm wondering, are there some telltale signs when someone can no longer live alone? What should we as individuals be on the lookout for to know when we should call for help, when something has gone too far and we should be worried about someone living alone?

Portacolone: Yeah, and I don't know whether the right way of phrasing this question is someone that cannot live alone anymore. I think maybe it's more general about someone not being safe anymore, because maybe this person could continue living alone if it is regularly checked and some better systems are in place. The signs I think are well known, about seeing rotten food, extreme neglect, dirt, mice, a lot of clutter. These are the signs. Also then malnutrition, someone that is very skinny. I think all the signs are quite well known.

Chin: Yeah, I like the way you're phrasing that. It's more of a safety. People can live how they choose but it's more of a safety for themselves and their well-being. That's what really prompts more of a concern.

Portacolone: Yeah, because imagine you find this situation and you clean, someone, a professional, cleans the house and makes sure that the food is received on time and makes sure that all the gas stoves are removed and everything is electric, like it happens in Denmark. Then the person can still live in their home and someone checks with them daily. That is feasible.

Chin: To end today, what are the next steps going forward for your project and your work? In the next five years, what do you hope to accomplish? Where do you hope the field in dementia research and care develops?

Portacolone: I'm particularly concerned about supporting older adults who live alone with cognitive impairment who do not have a social network, that may end up being assigned to guardians and that may end up often in emergency departments and maybe be identified in emergency departments. I've started a partnership with Andrew Cohen, who is an associate professor at Yale, as well as with Janelle Taylor, who is a professor at University of Toronto, and I started designing with them projects on how to identify older adults who live alone with cognitive impairment who are, quite especially at elevated risk for guardianship or, stays in emergency department. It's called frequent flyers in hospitals, and so how to identify them sooner rather than later, and then how to support them, and then also how to leverage the GUIDE—Guiding an Improved Dementia Experience—in order to support this population. Then I also started partnerships with colleagues around the world in Sweden, in Japan, in the UK, in order to make comparative studies of living alone with cognitive impairment and understand what policies make a difference. Then what I learn abroad then can benefit the older adults who live alone with cognitive impairment in the United States.

Chin: I can see how your work directly translates into public policy and the need for change. Thank you for what you're doing and thank you for being on the show today. Dr. Elena Portacolone. Thank you for the great work you're doing. I certainly hope to have you back on in the future.

Portacolone: You're welcome.

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