Individuals living with dementia require care that is often delivered by family and friends. This episode is devoted to discussing some of the unique aspects of dementia caregiving. Our guest today is Dr. Amanda Leggett. Dr. Leggett is a Research Assistant Professor in the Department of Psychiatry here at the University of Michigan. Her research, funded by the National Institutes of Health, is focused on issues related to dementia caregiving. She has interviewed over a hundred patients with dementia and their caregivers.
Related Links
- CAPRA Website: http://capra.med.umich.edu/
- Michigan Center on the Demography of Aging: https://micda.isr.umich.edu/
- The 36 Hour Day (Book): https://jhupbooks.press.jhu.edu/title/36-hour-day
Resources for Caregivers
- U-M Turner Center (in Ann Arbor): https://medicine.umich.edu/dept/geriatrics-center/community-programs/turner-senior-resource-center
- Alzheimer Associations: https://www.alz.org/help-support/caregiving
Transcript
Donovan Maust:During my training in psychiatry, one of the aspects that appealed to me about working with older adults, specifically, was that in many cases, rather than seeing a single patient, I was often working with couples, or the patient plus their adult child, or the patient plus a spouse plus several children. It wasn't unusual to run out of chairs in the exam room. For a person living with dementia, these family members really become critical members of the care team. You'll hopefully recall from earlier episodes that in the simplest terms, dementia is a decline in cognition that also causes a decline in function, the ability to address tasks of daily living. So a person living with dementia may initially need help getting through more complicated day-to-day tasks like taking medications or paying bills. But as the dementia progresses, they will need help with more basic tasks like getting dressed or bathing. The caregiver often becomes the primary point of contact with the healthcare system. It would not be hyperbole to say that a diagnosis of dementia is life changing for both the person with dementia, but also their caregiver.
Matt Davis:
Physicians interact with individuals living with dementia on a routine basis. Among researchers though, who may not know someone who has the condition, the degree to which it impacts the lives of family members and close friends is easy to underestimate. It's fair to say that dementia is unique, in both the nature of help required, as well as simply the amount of help needed. In this episode, we're going to take a step back from research, and our discussions regarding treatment and policy, and talk about what life is like for a caregiver. I'm Matt Davis.
Donovan Maust:
I'm Donovan Maust.
Matt Davis:
You're listening to Minding Memory.
Donovan Maust:
Our guest today is Dr. Amanda Leggett. Dr. Leggett is a research assistant professor in the Department of Psychiatry here at the University of Michigan. She completed her PhD at Penn State with Dr. Steven Zarit, who is a pioneer in dementia caregiving research. She joined faculty at the University of Michigan in 2017. Her research, funded by the National Institutes of Health, is focused on issues related to dementia caregiving. She's interviewed over a hundred caregivers of persons living with dementia. In addition, Dr. Leggett has hands on caregiving experience as a long-time hospice volunteer. She's here today to speak with us about caregiving, and in a later segment, will introduce us to a caregiver that she's gotten to know. Amanda, thanks so much for joining us today.
Dr. Amanda Leggett:
Thank you so much for having me. I'm excited to be here.
Donovan Maust:
First, I was wondering if we could get started. Could you just tell us how you got involved in studying dementia caregiving?
Dr. Amanda Leggett:
Yeah. Actually, when I was in high school, my first "real job" that I had was working as a waitress in an assisted living facility. It was one of those jobs where people generally stayed for two months and then left because they realized they could make more money at Chili's. You could get tips at Chili's. But I actually loved that job so much. I found that I really loved the residents and their stories and interacting with them. I think it also really opened my eyes a lot to the cognitive and psychological challenges that exist among residents often in these facilities. So it really kind of peaked my interest in gerontology to begin with, so when I went to college, I was specifically interested in understanding adult development and aging, and thinking about some of these psychological issues that I really witnessed in this job. Because my grandparents all passed away when I was quite young. I didn't really have much relationship with them. So this was my first exposure, so to speak.
As I said, I went to college interested in adult development and aging. I guess I also realized through this job, I was rare in that I had that interest, in some sense, that so many of my coworkers really hated the job and were ready to get out of there, and I just absolutely loved it. But I also did a lot of babysitting. I did a lot of work with my church's youth groups. So I was really interested in all age groups. I think I got interested in being able to think about aging on this developmental trajectory because all older adults were once children, once adolescents, once adults, right? So how does the whole lifespan inform who these individuals become? So when I went to grad school, I chose a developmental psychology PhD program that could help me think about aging through that lens of the full lifespan. As Donovan introduced, I was fortunate to be in the lab, working with Dr. Steven Zarit, who is a pioneer in the area of family care. I actually went into his lab with interest in intergenerational relationships.
Some of the work I had done in college was really exploring relationships between older adults, and grandchildren and adult children. Steve had some studies kind of in that area. But then the more I got into the lab and talking with him, and thinking about the research he was involved in, I realized, "Wow, actually, dementia caregiving was a way for me to bring all of my areas of interest, kind of aligning into one area." Because I was interested in psychological wellbeing, cognitive health, but then I was also interested in intergenerational relationships, which is something you really see in family caregiving. Because often it's a spouse, but often it's an adult child, grandchildren may be involved, daughters-in-law, sons-in-law. It really brings the whole family into the picture in terms of working with someone who's diagnosed with dementia. I think that's how I landed there, was from this interest in older adults more broadly, and also the full lifespan. And then psychological health, cognitive health, and all of these areas really align within dementia caregiving.
Donovan Maust:
It all started as a waitress in assisted living. That's an amazing trajectory.
Dr. Amanda Leggett:
Minimum wage job, no tips. But it was great. I absolutely loved it. I'm grateful to have started there. I probably wouldn't have found this love and this passion.
Matt Davis:
Thinking about caregiving. Caregiving isn't just unique to people living with dementia. There's a lot of chronic conditions that people talk about with caregiving. How would you say caregiving for a person with dementia is different than any other chronic condition?
Dr. Amanda Leggett:
Right. Well, dementia itself is different in many ways in that it's progressive, and as of now, there is no cure. So in contrast with some other chronic conditions, even conditions that may be long lasting, sometimes there are treatments that can work or that can cure the condition. We don't see that with dementia. We see good days, but generally speaking, it's progressive and things are getting worse over time. I think something else that's unique to dementia specifically is that we see areas of impairment across multiple domains. People tend to think of dementia as a cognitive disease. Alzheimer's disease, they think, "Oh, well, that's memory loss," which is true. We see cognitive deficits like memory loss with dementia, but we also see physical and functional declines, and also behavioral and psychological impairments can come along with a dementia diagnosis. So all of these things together over time can really change the autonomy of the individual. That is quite different or distinct from some other chronic conditions, such as say heart disease or cancer.
With dementia caregivers, we see a really strong emotional aspect here. Just comparing dementia caregivers versus other types of caregivers for chronic conditions, we tend to see higher levels of stress, higher levels of depressive and anxiety symptoms as well. Imagine having a relationship with a spouse or with a parent who starts to forget shared experiences that may be really meaningful in your life, or ultimately, over time may not even remember who you are and how you're related to them. Emotionally, that can be very challenging in contrast with other chronic conditions, is if you're a child and your parent has always been caring for you throughout your life, and now those roles start to reverse and you're providing care for your parent who may have changed dramatically, this can take a great emotional toll. Or even with some forms of dementia, such as frontotemporal, you might see person personality changes. Maybe your mother who was always very mild mannered, her personality changes and she becomes much more abrasive with the disease. So some of these changes are quite distinct.
And then I think a final thing I would emphasize here is, as this autonomy declines, and as these levels of impairment start to increase over time, people talk about the 24 hour nature. In fact, I think one of the most popular long-lasting books in dementia caregiving is called The 36-Hour Day, which gets at this idea that all that a caregiver does is really more than a 24-hour day. It's a 36-hour day of having to help monitor or deal with safety concerns, for example, of an individual with dementia. Stemming from the dementia itself, there are distinct challenges from what we see with other chronic conditions and all of these things kind of align together to make a more challenging picture for dementia caregivers.
Matt Davis:
I really can't imagine thinking about just ... I mean, I'm sure it varies a lot in terms of the memory loss and the loss of shared past experiences, but to not have that over time, it must be very difficult when you're putting in so many hours and doing so many things to lose that attribute. I can't really imagine. It must be terrible.
Dr. Amanda Leggett:
Yeah. I recently saw on the news, actually, a story of a woman whose husband had early onset dementia and he couldn't really remember consistently that they were married. One day he said to his wife, "We should get married. We should make this a real thing." So they did. They had another wedding and another celebration that would be more recent and more present in their memories. Something special that she, the wife caregiver, could kind of hold onto in moving. I thought that was a really beautiful story. But it also captures some of the heartbreak of potentially your husband not even remembering that you are in fact married.
Matt Davis:
I saw the same story. I remember she was talking about the little things that she could tell that he could remember and things, and that was kind of worth it for her to keep her going and motivate her.
Dr. Amanda Leggett:
Mm-hmm (affirmative). Exactly.
Donovan Maust:
Amanda, in an earlier answer, you alluded to the relationships of caregivers. Who's the most common caregiver? What types of relationships, what sorts of folks can be caregivers?
Dr. Amanda Leggett:
Mm-hmm (affirmative). Exactly. I think in the research perspective, we tend to think a lot about a primary caregiver. There's often an individual who's doing predominantly the largest amount of care. But in reality, these individuals are situated within larger family and social networks that may be assisting with care. But if we're thinking of a primary caregiver, someone who's doing the most assistance in terms of care, often this is a spouse or an adult child. In most instances, those are the most common. Particularly, in terms of adult children, daughters are most commonly providing care. But other relatives like sons or daughters-in-law, other friends, niece or nephews, we're seeing more and more grandchildren taking on significant roles in family care. So we really see the full family network kind of interacting and coming together in terms of supporting an individual with dementia.
Sometimes this is quite complex. Often in the United States, families disperse and they're not all located in one geographic region. So sometimes the decision is made by proximity, but this can be complicated when one sibling may be in California, the other's in Michigan. So the one that's in Michigan is seeing the day to day and what's going on, and the one in California is just having occasional phone conversations. They might have a different picture of the situation, which can be challenging. But I would say, most commonly, we're seeing family members, sometimes we'll see friends or neighbors as well.
Matt Davis:
I started wondering about what happens when you don't have a logical ... If you don't have a spouse or a child, what happens?
Dr. Amanda Leggett:
Yeah. Yeah. I think this varies a lot, depending on the situation. Oftentimes, we'll see close friends or neighbors, even church members step into this role. You mentioned, I've done some hospice work. I remember a former patient I worked with, the man who was kind of the primary caregiver for this woman who had dementia, was a close friend from a church community because she didn't have any children and her husband had passed. So we can see other members of the social network step into this role. I think often these are also instances where formal care can come into play, whether that be a hired aid or nurse that might come in to help. Or sometimes these individuals might go into a long term care facility, which might be a good bit for them.
However, I do think it's also true that some individuals may be living independently in the community because they don't have a natural carer in place. Maybe sometimes those individuals are in need of supportive services, but they're falling a little bit below the radar in that sense, just based on their independent living and maybe others in their network not really knowing what's going on. I do think that's possible too, but often people in the broader social network will kind of step in, whether it be a neighbor or other friend.
Donovan Maust:
I want to go back a couple minutes. We're covering so much good ground. You made a comment about sometimes proximity can be an important factor. So there might be the kid who lives closer and another child who lives in California. I think clinically, what can be really interesting is, if you have a family, oftentimes there can be complex family dynamics, and those don't go away when the person develops dementia. So if there was tension between siblings before mom or dad got sick, there still will be tension. Maybe it will even be exacerbated because of the decisions that need to get made.
Another thing that can be complicated is say the parent who's developed dementia maybe wasn't the nicest parent when they were younger and now they're old and they need care from children who maybe don't have the greatest memories of mom or dad from when they were young. Those are hard things. You can't find that kind of information in Medicare claims data or the health and retirement study, but when you're actually in the room with these families, those types of relationships that have been building over decades can be really very important in the way that you try to help these families and sort of navigate some of the challenges there in the caregiving relationship.
Dr. Amanda Leggett:
Definitely. Yeah. Exactly, as you say, family dynamics can be complicated from the start. Dementia's not a cure for that. Often it'll amplify some of these difficulties. Oftentimes I hear this from my caregivers, is great frustration with wanting to make a decision and wanting to do something, but other family members are not in agreement. I often see it more commonly now, too, that it might be a second marriage for some of these partners. So not only are they dealing with their own children, they're dealing with their new spouse's children that are their stepchildren. Family dynamics can be quite complicated when different members have different perspectives.
One thing I always tell my caregivers, that I think is a great resource, that's maybe not highlighted enough, is that social workers are particularly trained to do what we call a family meeting, which is a really helpful way of getting everyone who has a stake or is involved in the room, including the individual living with dementia, to kind of express all perspectives, make sure all voices are heard, but have that external facilitator of a social worker to work with the family together. To be able to say, objectively, "Here's what we're seeing with this individual. Here's some of the decisions that need to be made." Kind of have some external guidance in talking through some of these things, because it can be very difficult to do.
Matt Davis:
People throw around a lot of terms when it comes to caregiving. People talk about formal versus informal, and things like paid versus unpaid. Can you tell us about some of those distinctions?
Dr. Amanda Leggett:
I think formal and paid are often used kind of equivalently. Similarly, informal and unpaid are usually relatively equivalent, although not exclusively so. A formal tends to be a paid caregiver such as an aid or a nurse or a volunteer. Even if the volunteer is unpaid, it's someone that didn't have a preexisting relationship with this individual. And then in contrast, we tend to think of informal or unpaid more as those family and friends who are already part of this person's life and now are stepping into a care role. Although, again, I said it's not exclusive. Sometimes family members are paid by the individual with dementia for the care that they provide. I would say there's some controversy in the field about these terms because they don't apply to all situations and sometimes are used as though they do. But yeah, generally we would see this formal caregiver as someone without that preexisting relationship, someone who's hired maybe to come into the home to help with monitoring or to help with daily care tasks like bathing and dressing. Some of the things that may be a little more difficult for caregivers as the dementia progresses.
Whereas informal, unpaid, generally that's referring to family and friend caregivers who already knew this individual. But as I said, sometimes these lines get a little bit fuzzy. Sometimes formal caregivers don't consider themselves as formal because over years of providing care for someone, they develop a close relationship with this person. So they view this person as a friend, even though they didn't know this person before they provided care. And then likewise, with informal "caregivers", sometimes they are, like family and friends, are paid and receive ... or are living with the individual, maybe rent free, some of these forms of compensation. So the lines get fuzzy, but generally that's what those terms are referring to.
Matt Davis:
Quick question for perhaps both of you. I'm curious, in the clinic, is this something that's really documented pretty early on in the chart in terms of who the point of contact is, is the caregiver, and things like that? Is this tracked and used clinically when you manage cases like this?
Donovan Maust:
Generally, yes. Or, I mean, I would hope it is. But typically for any adult, in particular an older adult, this can vary a little bit by state, but you sort of want a hierarchy of decision makers. So who's the next person we go to? Hopefully that's specified and documented ahead of time. Sometimes there's actually legal paperwork that people have completed to make it sort of official. If that wasn't done, and for some reason the person is maybe acutely ill and in the hospital, then each state has its own kind of hierarchy of who you go to, who is their decision maker. But generally you do try to document who's involved in the decision making. You have paperwork people need to fill out and give their permission that, "Yes, please do talk about my care with this person. That person can both give and receive information on my behalf." Generally, yes, I would say that's part of good clinical care to have this documented, outlined in the chart.
Dr. Amanda Leggett:
Yeah, I think it's part of good clinical care, but I do occasionally hear people complaining that it isn't in the chart and it needs to be. So I think sometimes it is overlooked.
Donovan Maust:
Right. Or it can be there, but people don't actually look it up, or don't know where to find it. That's sometimes the joy of electronic health record is the information might be there, but if you don't know where to find it, or if it's not easy to find, then it's as if it's not there.
Amanda, in your discussions with caregivers, in terms of their day-to-day roles and tasks, do you have a sense for what people tend to find to be kind of the most challenging part of the job?
Dr. Amanda Leggett:
Definitely. I think there's a number of things. I can tell you from some research that I've done in the past several years, I ask exactly that. Like, "Tell me about a challenge that you've had recently." I think everything that spans the gamut comes up in those interviews. Like when you think about those domains that I talked about of cognitive, psychological and behavioral, functional, someone's going to mention something that falls in every single category in each of those domains. But I think probably the most common thing that people will mention as being challenging are the behavioral and psychological symptoms of dementia. Especially when these behaviors can be hard to understand for a caregiver, such as hallucinations or delusions that are kind of a different reality from which the caregiver is currently living in. Or sometimes these behaviors can be harmful, like aggression. Or even embarrassing when someone with dementia's inhibition maybe is less and they're out in public. That can be very embarrassing for a caregiver. If the individual's dementia might say things that are not socially normal for someone to say.
But I think aggression, particularly agitation, these are maybe less common behavioral and psychological symptoms, but when exhibited these tend to be very stressful and very challenging for caregivers, very difficult. Other challenges, like I mentioned earlier, is this challenge of a loss of a relationship with someone, particularly when that relationship was always more equitable. Maybe in a spousal partnership, or as I said, changing roles between a parent caring for a child and now the child is learning how to care for the parent. So some of these relationship dynamic changes. I think caregivers often really struggle with seeing the individual with dementia struggle with a declining autonomy. It's hard for them to see frustration on the part of the individual dementia when they can't do tasks that may were very simple for them previously. I think that is very difficult for a caregiver because it is really clear evidence of that decline. Sometimes, especially earlier on, that decline can be very frustrating for individuals with dementia. They recognize that they're struggling or having difficulty with some daily tasks.
And then even outside of these symptom-based challenges, I think care coordination can sometimes be difficult. These family dynamics, like we've been talking about, can be very difficult. We see more and more family caregivers who are also employed. Or like in the case of adult children, they may be caring for their own children. I think we see increasingly more caregivers who are really juggling multiple roles in their life. So they're trying to provide the best care they can for their relative with dementia while also maintaining other roles. I mean, if you even want to throw COVID-19 in the mix. I mean, think about this, we have some caregivers who are trying to at home virtual school their own children, while also trying to care for a parent who has dementia and maybe doesn't understand, like, "Why do I need to wear a mask?" Or, "What is this pandemic and why can't I go shopping with you?" Some of these changes were really difficult for people in this past year.
Donovan Maust:
Yeah. I think that's a perfect segue to the next question, which is, what's caregiver burden? That's something, a term, that you'll see a lot in the literature. What's it mean? Usually, what are the components? What falls under the umbrella of caregiver burden?
Dr. Amanda Leggett:
Yeah. Yeah. Great question. That was a concept that kind of originated with my mentor, Steve Zarit, and some of his colleagues, Leonard Pearlin and Carol Aneshensel, goodness, back probably in the very early '90s. So it's been around for a while. It's a way of assessing kind of a subjective appraisal of caregivers' emotional, physical, and social stressors that they experience with the caregiving role. For example, maybe feeling that your health has suffered because of the caregiving that you're providing. Or feeling strained. Or strained within one's relationship. So it's kind of the way that this carving role can kind of bleed into our life, in terms of how we appraise our stress and wellbeing.
You asked about the components. When we think about our typical scale that we use, the Burden Scale to assess caregiver burden, it does have several components. For those of you who maybe have a statistical bent or background, you may be familiar with factor analysis, which can take a group of items and kind of align those items into similarities in terms of how caregivers are ... well, in terms of how individuals are responding to them. When we think about those components or how this concept of burden breaks down, one, it would be called role strain.
That has to do with the caregiving role interfering with other roles, like social roles or interference with personal responsibilities, for example, employment. Maybe you're needing to keep an eye on what your relative with dementia is doing at home, but you're also at work and that can cause some difficulties for you with your work. Or maybe it puts a strain on your social relationships, because you have a harder time keeping up with those. That would be role strain. Personal strain would be more like the personal feeling of strain that caregivers can experience, whether it mean feeling more anger at times. Whether that be anger at the situation or even anger at the individual. Personal strain that someone feels from carrying this burden of a care role.
And then I think another component also has to do with worrying about your performance as a caregiver. These are feelings that caregivers may hold about uncertainty regarding what they should be doing, or even feeling as though they should be doing more than what they are. This is a type of burden in and of itself, is you're wanting to provide the best care for your relative with dementia. Again, I'm saying relative, it's not always a relative. I tend to go there. But you're wanting to provide the best care for this individual with dementia. Sometimes you're worried about whether you are doing that, or if you could be doing a better job. These are the components that tend to make up a typical Burden Scale.
Matt Davis:
Where do caregivers learn about caregiving?
Dr. Amanda Leggett:
Yeah. I would say it starts maybe before diagnosis, but certainly, at the time of diagnosis, I think hopefully there's someone there with the ... As Donovan said, there may be multiple people in the room, in the clinic, so hopefully there's people there with the individual who's receiving that diagnosis. Ideally, you would be able to talk with a social worker at that time and get a sense of, what are the resources? I think a challenge is people may not sense a need for those resources in that moment. They're kind of trying to process this new diagnosis that they've just received. But hopefully in these clinical interactions, they can ask some questions, kind of get some ideas of what resources are out there. I think that's a great place to start. But there are a ton of community resources generally, whether that be through senior centers. Such as within Ann Arbor, at least we have the Turner Center. We also have Alzheimer's associations around the country. There's Lewy Body Dementia Association. Different diagnoses tend to have different associations that offer a large variety of resources.
Some of these things may be formal programs like support groups. That would be caregivers of individuals with dementia getting together, often with a facilitator like a social worker. Talking through challenges that they're experiencing and kind of problem solving and brainstorming together as a group, having some mutual peer support. There are programs like adult day or respite care services. These are programs where an individual with dementia or other older adult can go to the program. There's social activities. There may be exercise. There may be snacks or meals. It's kind of like a full program to engage these individuals, and also give the caregiver some respite or some time off to relax or get their own needs taken care of.
And then there's lots of training programs out there. Goodness, if you Google, certainly you're going to come up with a ton. Obviously, sitting within a university, some of these programs are going to be empirically sound programs that have been research. There's probably many out there that are not. This is where centers through universities or also programs like Alzheimer's Association can really point caregivers towards programs that are evidence based. There may be training programs, for example, to help caregivers learn how to manage these behavioral and psychological symptoms, which they maybe just don't have a natural skillset to know how to handle something like agitation or a delusion or apathy, some of these challenges. There's a lot out there. I think it can sometimes be challenging for caregivers to know where to look. I hear all of the time from my caregivers, in the research that I do, that they feel like they get the diagnosis and they're told, "We'll see you in a year or six month," and they leave. This has rocked this family's world and they don't know what are their next steps or what to look for.
I think on the medical system side, we need to be better about making sure we're equipping the patients and the caregivers with what they need and knowing what to expect, but also equipping them to know how to look and how to find these programs. Certainly, within Washtenaw County and the University of Michigan, we're very fortunate in terms of the number of resources that we have here, as we have many university-based centers, like this one that's hosting our podcast. But we have a lot of different centers within the university, specifically focused on dementia, that offer a lot of resources for caregivers. Not all communities in the United States have that, but most are going to have local senior centers. Most regions have some sort of Alzheimer's Association or the like. They offer all sorts of programs for caregivers to get involved with. But not all caregivers are ready right away. Some are. I think these different programs can have different benefit at different phases of the caregiving journey.
Matt Davis:
I was sort of wondering that myself, what the journey is like for the typical person going through this, in terms of the, I don't know if you'd call it stages, but the development as they come to grips with this and sort of adapt to the environment.
Dr. Amanda Leggett:
Mm-hmm (affirmative). Exactly. Yeah. Early on, I mean, some of these individuals are still driving, still very independent in terms of their functioning and leading pretty normal lives. And then over time, this progression takes the course and things become more difficult or more challenging. I think similarly with caregivers, it's a journey for them too. Some caregivers jump right in. They want to learn as much as they can. They want to attend every single training program. They want to be right there, ready to know what to do. Other caregivers just aren't at that place. So it takes a level of readiness, I think, to start exploring some of these programs. I think we have to remember as researchers and as clinicians, not all people have immediately that level of readiness. Each caregiver is different, there's a lot of variability. So we need to understand that in our working with them and try and target and tailor our approach to kind of meet them where they are and help provide them with what's going to be most useful in the moment.
Donovan Maust:
What happens if person with dementia, their needs exceed the capacity of their caregiver?
Dr. Amanda Leggett:
Yeah. Yep. This can be common over time. I think there's a wide variety of options or things that could happen. As I mentioned, in terms of services, I think a great one that I always recommend to caregivers is adult day or respite carer programs. There's been a ton of research into these types of services over the years. They find that not only do they reduce stress and provide relief for caregivers, and enable them to potentially maintain their care role longer, they also provide great stimulation for individuals with dementia. When individuals with dementia come home from respite programs, research has found they sleep better. They have less behavioral and psychological symptoms when they get home from these programs. This is an initial type of program that can help maybe a caregiver maintain that role longer when things are exceeding their current capacity.
Some caregivers will bring nurses or aides into the home to assist with some basic care task or to assist with supervision, to help in ways that exceeds ... If you're thinking about say an 85 year old wife of a husband with dementia, sometimes being able to lift that gentleman up and to help him physically into the shower may be beyond her physical capacity. So this is a way ... bringing nurses or aids into the home can help with some of these tasks. And then of course there are a variety of facilities, long term care facilities, such as assisted living or nursing homes. And then there's specialized memory care units. These are options for some individuals as well. Sometimes they're really great options. Every family is different in terms of their preferences and their values in terms of whether or not they are trying to prioritize home-based care, whether they're open to considering long term care options.
I volunteered and worked in long term care settings for a long time. I think they can be great options for people, but it varies. It varies family to family. Of course, there can be financial concerns with these programs too, because some of these do come with great expense. I would say there's a lot of state by state variability in funding structures for some of these services. So that can be a challenge. I think sometimes caregivers maintain care longer than they likely should. Maybe care has exceeded their capacity, but they don't see other options and they're holding onto that role maybe longer than they should. One thing I often encourage friends, family who are in this caregiving role and context is ... I think this is honestly true for a lot of chronic conditions or other life situations, is we need to make specific offers of help.
I think that as friends and family of people going through challenging situations like this, it's easy to say, "I'm here for you. Let me know what you need." But I think you need to be specific as friends and family and say, "I would love to come and sit with your mom for four hours so that you can get out and enjoy lunch or go to the grocery store." Make a specific request that someone can take you up on. Because yeah, this is often a lonely and isolating journey. I think caregivers often struggle to reach out for help. So I just encourage those of us who may be in a clinical supportive role, or also friend and family role, is to try and care for others in this way and think of specific ways that you can help them out.
Matt Davis:
That is a great point of advice. I mean, it's so easy in America to say, "Oh, let me give you a hand." But to be specific like that, that takes it to another level of actually doing something to be helpful. I love it.
Donovan Maust:
Yeah. I was going to say the exact same thing. What I like is, it turns the default into, "I'm going to do something to help you," as opposed to the default being, "You need to ask me for help." The default is, "I'm going to do this for you unless you tell me otherwise." I love that.
In the last question here, I feel like we have spent a lot of time talking about the burden and the challenge of caregiving. I was wondering if we could end on maybe a little bit more positive note and ask you for your reflections on more positive aspects of caregiving, what you've heard from caregivers, what they've gotten out of the experience.
Dr. Amanda Leggett:
Yeah. I'm really glad you asked this question because I think ... This has been a concern of many of us in the field for a long time, is the focus in family care research has been so negative for so long that we are increasingly really trying to focus on the positive, because there are many. Some individuals really thrive in caregiving roles. I mean, it's kind of amazing to see that some people inhabit this role so naturally and so well. It provides life meaning and purpose to individuals that was maybe missing previously. So I think it's important to recognize all of the benefits that can come with caregiving. One of them could be relationship closeness. Spending more time and in a different capacity with an individual with dementia, oftentimes caregivers report that they've really grown in their relationship with the individual for whom they're assisting. Some learn new skills.
They've developed a whole new skillset. Maybe they've learned some new medical techniques. Maybe they've learned new ways of being adaptable in their own life or things that they can bring into other areas of their life through this caregiving role. As I said, it provides great meaning and purpose for people. I think generally caregivers will tell us a lot, they just really value knowing that their relative is well cared for. Oftentimes they say, "I know that this individual really appreciates what I'm doing for them." So, often they feel great value in the care they're able to provide, they know or feel comfortable and confident that they're meeting the desires of this individual or values of this individual. Oftentimes they say, "I know my mom or my wife wanted to be cared for at home and I'm able to do that for her. I know that she's receiving good quality care." So there's a lot of positives, a lot that can be gained from being in this role.
Donovan Maust:
Great. Amanda, thank you so much for joining us today. This was just a really great conversation. I think we learned a lot. In our next episode, we're going to speak with a caregiver that Amanda's worked with, Peggy Arden, about what it's like to provide care for her husband who was diagnosed with Alzheimer's disease. So we hope you'll join us for that one. Thanks.
Matt Davis:
If you enjoyed our discussion today, please consider subscribing to our podcast. Other episodes can be found on Apple Podcasts, Spotify, and SoundCloud, as well as directly from us at capra.med.umich.edu, where a full transcript of this episode is also available. On our website, you'll also find links to our seminar series and data products we've created for dementia research. Music and engineering for this podcast was provided by Dan Langa. More information available at www.danlanga.com. Minding Memory is part of the Michigan Medicine Podcast Network. Find more shows at uofmhealth.org/podcast. Support for this podcast comes from the National Institute on Aging at the National Institutes of Health, as well as the Institute for Healthcare Policy and Innovation at the University of Michigan. The views expressed in this podcast do not necessarily represent the views of the NIH or the University of Michigan. Thanks for joining us. We'll be back soon.
Listen to more Minding Memory podcasts - a part of the Michigan Medicine Podcast Network.
