Fernanda Pires:

Imagine you get a call that your parent has fallen or maybe their memory is starting to slip in ways that worry you. Almost immediately, you think, what do I need to do? Can I handle this? Who else will help? Now, imagine an entire country having that same conversation at the same time. Because we are. With an aging population, smaller families, and raising dementia rates, a quiet question is becoming a national one. Who is responsible for care?

Welcome to the Michigan Minds Podcast, where we explore the wealth of knowledge from faculty experts at the University of Michigan. I am Fernanda Pires, a lead public relations for the Michigan News Office. We are speaking with Sarah Patterson, a researcher who has been mapping the gap between our core beliefs about family duty and our shrinking capacity to meet them. Sarah is a demographer and sociologist at the University of Michigan’s Institute for Social Research.

Hey, Sarah. Welcome to the show. We started the podcast with a big picture question. Who is responsible for care? Is the belief that family takes care of family a timeless moral value or a math problem that no longer adds up?

Sarah Patterson:

Great. Thank you so much for having me to the podcast. So this is a good question. So I would say that our expectations for family is pretty universal. This is a widely held belief among many people, many nations, that families should help older adults with their care. But as you said, it’s becoming sort of a math problem because older adults’ families are changing. So we have higher rates of what’s known as gray divorce or getting divorced later in life. Family estrangement has become a big topic. For instance, Oprah has been talking about it, so it’s a big topic in the public. And there’s these sort of family changes that are happening for older adults that call into question what our expectations might be in this changing sort of demographic environment.

So my research is concerned with how do we think about these expectations for families when families are changing. And currently, in the current research that I’ve looked at, most people still believe that families are responsible. So we did a study recently where we asked 2,000 Americans about their thoughts. And most people said that the family as a unit has most of the responsibility to care for an older adult, whether or not they have sort of a more severe impairment like dementia or just physical limitations like difficulty walking. And so what we found is people still feel this way, even though families are changing. But there is a question about whether these sort of values will persist into the future as there’s more pressure on smaller families to take care of older adults in the US.

Fernanda Pires:

So it is time to officially call it a public health crisis. And how big of a problem is this and why?

Sarah Patterson:

I think we tend to think about families’ caregiving for older adults as a very private endeavor. So this is something that happens in your home. It’s not very public. But it is a public health issue because of the effect on so many different people. So you have the older adults themselves who are struggling with health issues. And then you have the family members who are taking care of the older adults who it may impact their health as well.

So it is sort of a public issue, even though we treat it very privately. And there’s lots of reasons why we treat it privately. Family matters, some people really don’t want to talk about. This came up a lot in our focus groups that we did with caregivers of older adults. It’s sort of like, I remember one person said, “My mom would be mortified if I talked to the neighbors about her health issues.” It’s seen as very private, but it does affect public systems. It affects the hospitals, the Social Security system. It affects the public in different ways through various family members who are providing that care as well as the older adults themselves.

Fernanda Pires:

Okay. So you guys have a clue how big this is nationally or no? Like this is like the whole US is facing this problem, or it is something more like local, some states?

Sarah Patterson:

I think it goes from your neighborhood up into the whole US. So we did a study where we looked at how prevalent it is to have an older adult in your family who has dementia. And we found that about one third of extended families, so that would include your cousins, your grandparents, sort of this more extended family system. About a third of families have an older adult who is 65 and older and has dementia or some sort of memory impairment. So it’s pretty pervasive, right? So here in the room, we’ve got three people. One of us has a family member who’s an older adult with dementia. So it is pretty pervasive and it’s a part of people’s everyday lives, which again ties back to that public health issue.

In my research about who should, the public again continues to see the family as really responsible. They see the family unit as a whole, especially partners or spouses of older adults, and then adult children. So there’s a huge body of literature. Actually, most of our literature and understanding of these attitudes is on adult children because it’s such an ingrained idea that people’s adult children should provide care for them later in life. This idea of reciprocity. Your parents gave to you and brought you up. So later in life, you should return that favor and take care of them. So that’s really built into a lot of people’s personal values and just their social values.

But there is sort of this tension that happens between like who can. And there’s lots of different aspects that go into the sort of like who can. There’s distance. If your parent lives in your home or nearby, that facilitates caregiving in a way that if you’re countries away, which we’ve talked about, that it just changes the dynamics.

And I think something that’s interesting about that though is it kind of relates to the definition of care. So we did some focus groups with caregivers, and people have pretty broad definitions of caregiving because just because you’re far away doesn’t mean you aren’t balancing their finances, keeping them emotionally healthy, socially engaged. It might just look different than the person who’s co-residential with the older adult, and perhaps like helping them shower or helping them eat or doing their grocery shopping.

So I think that’s something to keep in mind is that when you ask people if they’re a caregiver, they might say no, but then if you ask them, what are they doing? They’re like, “Oh, well, I do all of my mom’s bills. I do all of her healthcare decisions,” things like that. So they are a caregiver by our definition as researchers. But yeah, so there’s sort of this distance issue, people’s own families.

So in our focus groups, we found that people who didn’t have sort of their own nuclear families, so they maybe weren’t partnered or had children, their families really expected them to sort of pitch in. This idea that you have more time availability because you don’t have your own sort of time constraints. Or people who were not working at the time, less time constraints for those people made other people feel that they should provide care.

And then you also just have this sort of what you could call like capacity to care. Again, in our focus groups, some people just said, “My sister’s a nurse, but I just don’t think, given her history with my mom, that she has the kind of capacity to provide good care for her.” So family members often have these judgements of one another, and what they can and can’t do. And of themselves. Some people say, “My relationship with my parent was so much this way, it’s difficult for me to think about doing that for them later,” even if they want to. So these situations bring up a lot of family dynamics and feelings, I would say, that maybe aren’t captured as much when we talk about sort of the numbers behind caregiving. These sort of nuances that happen in people’s everyday lives when they’re making these decisions.

Fernanda Pires:

Let’s explore the topic that, caregivers, they become a second patient. So instead of one person job, how do we build a care squad?

Sarah Patterson:

Yeah, this is a great question because caregiving does affect the caregiver. And I think that there has been a lot more highlighting of this issue with social media, or even public figures who’ve become caregivers. So I think of like Emma Willis, Bruce Willis’ wife, he has frontal temporal dementia, and she’s been very outspoken about providing care. And so she’s kind of shown, she’s been very honest about how it’s affected her.

And I think that’s sort of an uncomfortable space to be because, tying back to what I was saying about this is a very private thing for people, it’s hard to say, “This is difficult. I need help.” But to your point about a care squad, that’s what’s really important. I think what you see far and wide from caregivers themselves is that they give the advice to one another that you have to ask for help, you have to tell people what’s going on because otherwise it is an incredibly isolating experience and kind of communicating with other people can be really impactful in helping them maintain their own health and wellbeing in multiple ways, their physical health, their mental health, emotional health.

So I look to the caregivers in the community who are doing this sort of social media outreach to other caregivers, but also just the public to sort of make this issue kind of front and center because it is and does affect so many people in the US.

Fernanda Pires:

I’m here thinking about people that they do take care of their aging parents and they need help, but they cannot afford help. So it gets pricey. So what is ideal in those situations?

Sarah Patterson:

Yeah. The financial impact of caregiving is another really important aspect. So AARP has this estimate that families tend to spend about $7,000 out of their own pocket every year to help older adults. And so it does. It has a huge impact. And then if you start to look into nursing home care, I know locally here, putting an older adult into a memory care unit, if they have dementia costs just starting at $12,000 a month. So it does have a huge impact on people.

Or my own mother, I tell the story that she called around for sort of senior housing, and a lot of places were starting at 5 to $7,000 a month, with the idea that she would then go into assisted living there. So these are costs that not a lot of people can withstand. So I think the financial impact of caregiving is becoming a much more discussed topic, and one that we need to discuss because it does have an impact on people’s lives.

Fernanda Pires:

So this discussion has to start early.

Sarah Patterson:

Yes. Yeah. So this is, it’s really interesting, so I sort of started looking at the care of older adults through the lens of thinking about families changing. And then I’ve always been interested in these sort of social norms or expectations. So my research shifted into that.

But even more recently, after doing focus groups and talking to a lot of caregivers, planning becomes just so important. So actually in our focus groups that I’ve talked about here, that was actually one of the main findings is that a lot of people became caregivers due to a lack of planning. It wasn’t like they made this decision like, I’m going to do this care, you’re going to do this type of care, and this is how we’re going to do this. It’s mostly like one day their parent got lost or had a car accident or something like that, and that’s the day they became a caregiver.

And so that is a huge takeaway that I’m finding is that plan, plan, plan. Again, to give an example from my own life, at the holidays this year, I sat down with my mom, and just said like, “We have to talk about this. I know it’s uncomfortable to talk about aging and end of life care. But not just end of life care, but just later life care. What do you want your life to look like?” But I do think planning is such an important piece.

And I will say, because I think if anybody’s listening to this, they might think, well, I did make plans and it still want haywire. I think of the local story here in Michigan of an older man who was a veteran and he had been caregiving for his wife. I think he was working at Meijer. And some social media person found him and they raised money for him because what happened was he lost his pension, and then he had to caregive for his wife, which basically bankrupted him. And so later in life, he had to go back to work in order to sort of financially recover from that. And so he did plan. He had built into retirement, they had made plans. But even the best laid plans can go awry. And so it’s important to make those plans, but also sort of prepare for the unknown as well as much as you can.

Fernanda Pires:

Let’s dive in a little deeper on dementia. Your research shows we expect even more from families when dementia is involved. But dementia patients often, they don’t know that they are struggling. What can we do to not miss the signals here?

Sarah Patterson:

Yeah. So we do find both our expectations for families when an older adult has dementia, as well as the actual behavior of families, is that more people sort of rally when an older adult has dementia. And part of that could be due to the fact that older adults who have sort of this cognitive impairment do require more help. There are more things that they might need in that way.

Dementia is sort of an interesting impairment in that it can come on really slowly. It’s not like an accident or something that like one day totally changes things. It can be really, really slow and progressive. People sort of, their language flattens, which means that they don’t use as wide of a vocabulary. They’re not as talkative as they maybe once were. So things that maybe just look like they’re slowing down or getting older could be early signs of it. But at the same time, getting a dementia diagnosis can be really difficult.

So I think it’s important for people to, if you get that gut feeling, what I’ve found is in talking to people, usually they had a gut feeling, like something just wasn’t right that just wasn’t usual for my parent. And I think just understanding that, even though dementia is much more common as people get older, it is not a normal part of aging. So it does signal something in the system has gone wrong.

So I think it’s important for people to kind of notice those small signs and keep track of them. So one of the things that happens when people get dementia diagnoses is that sometimes they use the family reports. So it’s important to document and kind of keep that history. So if you go to the doctor with your parent or an older adult in your life, that you can articulate those stories and what exactly was happening because the older adult might not be able to at that point.

Fernanda Pires:

Let’s talk about solo aging. For our listeners aging without children, what is their plan B?

Sarah Patterson:

So solo agers tend to be people who are unpartnered or maybe don’t have adult children. Partners and adult children are the most common caregivers for older adults. But what we found is a lot of people, they have larger communities that they call on. For instance, in our focus groups that we did, there was an older woman who, she was just a member of the person’s church. And she went and took care of her. And this woman had like a whole network of people in her community. So just because someone is a solo ager, they can really have a community around them that kind of steps up. And that’s really what we find is that the community steps up for people when they notice that there is a gap in their care.

Fernanda Pires:

Your study also points to friends and chosen family as crucial caregivers. How do our policies in hospitals need to catch up to include them?

Sarah Patterson:

There was a study that looked at like 190 countries and their policies towards paid leave to help an older aging family member. And really one of the takeaways from that study was that policies, either at the local level, like you said, in a hospital, or even state and federal policies, tend to focus on a very narrow definition of families. So partners, children. But then the reality of people’s care networks is that they’re much larger than that.

So this was an issue again that came up in our focus groups in terms of people were saying if they were a friend or sort of a more distant extended family member, they often bumped up against these rules that you may not notice as an adult child if you’re caregiving for your parent. That they might not necessarily be let into the room in the hospital or able to help make decisions even if they’re the sort of decision maker for the older adult.

So I think it’s important, and I know there’s a lot of work coming out of the Michigan Medical School actually from scholars looking at how to integrate these sort of non-traditional caregivers into the medical system to sort of overcome those barriers that you’re talking about.

Fernanda Pires:

We have talked a little bit about it, but I would like to end with a challenging question. What is one question every adult child should ask their parents about aging before emergencies or emotions are involved?

Sarah Patterson:

Yeah. So this is a question that I wish everyone would ask their parent, and it’s a pretty broad question, but just what would you like for your later life to look like? I think it’s important to know what your parent wants and what they sort of foresee. Because it might be, what we find is it’s much different than maybe what the adult children think would be right for them.

So I think it’s really important to have these open and honest conversations where you ask, “Okay, at what point would you be willing to transition into assisted living?” The answer for some people might be never. I don’t ever want to. But I think it’s important to have these conversations, and just get the conversation started with what do you want your later life to look like?

Fernanda Pires:

Sometimes parents, they don’t complain because they don’t want to be a burden. But it’s important to have those conversation, and it’s really important that they talk to us and they say what they need. So what’s the balance here?

Sarah Patterson:

Yeah. You definitely see a universal theme of parents and just older adults saying that they don’t want to be a burden to the people who are caregiving for them. But to your point, I think it’s about having an open and honest conversation. And understanding, I mean, this is something I said to my own mom when she said, “I don’t want to be a burden.” I said, “Well, that’s my decision to make when it becomes a burden. And I will tell you. I have a very open attitude towards that.”

But it’s like, I think people might kind of prohibit what they ask people or talk to people about because they’re worried about that. And not to diminish that feeling in any way, but you don’t know what the other person is thinking. So I think it’s just really important to have that open conversation, and let other people sort of give you the feedback about whether they do or don’t want to help, and not just assume that maybe they don’t.

Fernanda Pires:

And thinking about my reality, I am from Brazil, my aging parents are there and I have a sister there. So for my sister, she’s physically there and she will have more responsibility, and I have more emotional responsibility. How do I talk to my sister about it? Because talking to your siblings is very important as well, right?

Sarah Patterson:

I think again, this keeps coming up in the focus groups we’ve had, the surveys we have. Family dynamics play a part. You might be the little sister or the older sister, and that creates certain dynamics. But again, it’s being open and honest, and being open and honest before there’s a crisis that can help facilitate those situations later.

Fernanda Pires:

Sometimes parents, they are old fashioned and they don’t want to change. And we can see that they need to change and they need help. So how do we navigate those challenges without disrespecting our parents, but we know that they need help.

Sarah Patterson:

Yeah. Again, I think having open and honest conversations can really help. But realizing that some people, that it’s difficult to acknowledge that you’re aging or need help. Again, in our focus groups, we found that people just constantly talked about older adults who were uncomfortable. The word stubborn was thrown around a few times by our participants. That people did really have a hard time getting over that. And I think that’s where planning and having conversations can really help kind of diminish those issues later on.

Fernanda Pires:

I saw that a lot of people when they age, they get depression. Some might say, “I want to die. Why I’m still here?” How to handle those situations and try to be positive around them.

Sarah Patterson:

Yeah, that’s a really difficult issue, and one that I want to acknowledge is people’s lived reality. But I think, again, kind of understanding what’s at the heart of that conversation. They’re saying that they don’t feel well. Is that because they feel isolated? Do they not have the right access to food or the ability to bathe that might make them feel better? Are their basic needs being met? So, thinking about what might be missing for them. Do they need to get out of the house? So just understanding what might be missing that makes them feel more whole, I think.

Fernanda Pires:

We are expanding a little bit, but it’s really important for aging people to have hobbies and friends.

Sarah Patterson:

Yeah. Social connections, they liken it to basically smoking. If you don’t have social connections, it can be just as unhealthy for you. So it is, I think it’s important to help older adults and to help folks with disabilities in the community be able to participate fully. And that’s a topic of accessibility, making the sidewalks accessible, making transportation accessible, and making sure that people don’t become isolated, and that they can participate in the community.

Fernanda Pires:

Thank you so much for talking to us, Sarah. It’s always a pleasure learning from you.

Sarah Patterson:

Yeah. Thank you so much for having me. I really appreciate it.

Fernanda Pires:

Thank you for listening to this episode of Michigan Minds, produced by Michigan News, a division of the University’s Office of the Vice President for Communications.