Research Project Examines Extended Family Dementia Caregiving

Caregiving for family members with dementia can be difficult and stressful. For many of those caregivers, it progresses from helping out a little bit to sometimes becoming a full-time job.  

Now, a group at the Center for Gerontology at Virginia Tech is researching extended family members who become dementia caregivers throughout central Appalachia. They want to understand how these caregivers moved into that role. 

For his series “Getting Into Their Reality: Caring For Aging Parents,” News Director Eric Douglas speaks with Project Coordinator Brandy McCann, to find out what they are looking for. 

This interview has been lightly edited for clarity. 

Douglas: You’re researching caregivers, family, familial caregivers for people with dementia?

McCann: That’s right. This study is focused specifically on extended family caregivers. I will just tell you quickly about how we came to be studying extended family. So the primary investigators for this study were doing a study based in Appalachian Virginia on service use and dementia caregiving. They noticed that about 10 to 15 percent of the sample was extended family caregivers. When we say that, we mean siblings who are helping out, grandchildren, nieces and nephews and just other extended family caregivers, because typically it’s an adult child or a spouse who is in that primary caregiving role. 

Douglas: For what it’s worth, I’m in that role. My mother has middle stage dementia, and I’ve been dealing with that for the last several years. But you’re not talking about me caring for my mother, you’re talking about the rest of the family, the aunts and the siblings. 

McCann: They’re often classified as “others” in research. How did these other family members get to be in this caregiving role? In that study, they were in a primary caregiving role as the first contact. So, now we’re doing this larger study. We started out in Virginia and now we’re interviewing people in North Carolina and Maryland, West Virginia, and the broader region, all the surrounding states of Virginia. We wanted to understand more about how these extended family caregivers came to be in that role, their family histories, what challenges they might face, in terms of service use, because we are very interested in understanding barriers to service use the families may face. 

Douglas: What have you found so far?

McCann: We know there are larger demographic changes in the country and in the region. In family science, we used to talk about families as being shaped like a pyramid. There were maybe one or two older adults at the top, middle generation, a few more and then a lot of younger generation. You had this large circle of younger people to care for an older person. And now we see in family demography that there are fewer of those younger generations to care for an older adult. And so they talk about moving from a pyramid structure to a beanpole structure. There might be one niece, for example, who’s caring for not only her mother, but her aunts as well. We also see divorce and re-partnering across the lifespan, greater numbers of that. So maybe now stepchildren can be involved in the care of a person who’s having memory loss or dementia. 

Douglas: I wonder too, if the kids have moved away, and now the kids are four states away, so it falls to somebody else to take care of grandma?

McCann: Absolutely, absolutely. And we see that maybe there’s a sibling who’s doing the day to day checking in, that kind of thing, and making sure that the person can still stay in their home. And maybe the adult child is the power of attorney, but they’re out of state and they’re maybe making some decisions, but they’re sharing the work of caregiving, so to speak.

Douglas: What’s the scale of this? Are we talking 30 percent of seniors in this category, 50 percent? Do you have any grasp?

McCann: That’s one of the things that we’re finding, even measuring the numbers of those extended family caregivers who are involved can be tricky, because it depends on how you define caregiving. Some people, it’s very clear, there’s one person involved; that’s typically an adult child or spouse, and they’re doing 90 percent of the stuff. But in other situations, you might have a whole family involved, it might be several adult children, maybe a spouse, grandchildren, especially I think of in rural areas, or an Appalachian region, where you may have family land, and where there are multiple families living on the same property. There’s all kinds of people helping this person stay in their home, maintain their lifestyle, as they had it before they started having cognitive decline. In that situation, there may be multiple people who are doing caregiving in that family so it gets a little bit harder to measure.

Douglas: I hadn’t thought about that kind of rural community where everybody lives up the same holler, so they check on mom. 

McCann: That’s one of the challenges that we’re finding in terms of finding participants is that sometimes the grandchildren, for example, don’t think of themselves as caregivers. They might be going to Granny’s house every day. As a researcher, we would consider care work, going over there and helping her read the recipes to do family dinners, and maintaining those kind of family traditions. And that person can be going over there every day, doing all this really important work, but they don’t think of themselves as a caregiver. They’re just helping Granny. 

Douglas: I wonder if those people think of caregiving as the more – nursing, physical, hands-on, feeding type behaviors versus just hanging out and being with them and making sure they take their meds and that kind of stuff.

McCann: That is such an important issue. I think people underestimate how important that is, and that’s why it can be hard when people do kind of reach a breaking point, and they realize they need help, it can be really hard to find somebody, because I think it’s hard to describe what exactly it is that they’re looking for. 

We just published an article on caregiver vigilance, and when we asked caregivers how many hours a day do you feel like you need to be on duty for your relative who’s having memory problems? So often people say, 24/7, even if they’re only doing like three to four hours of actual stuff, that feeling of being constantly vigilant, providing that high quality level of care and attention to someone who’s experiencing cognitive decline is very, very important. That’s kind of the crux of the issue in terms of finding appropriate services and that kind of thing.

Douglas: Tell me about the research you’re doing. What do you need from somebody to participate?

McCann: We’re asking that people be an extended family caregiver. So that would, again, be siblings, grandchildren, nieces and nephews, or any step and that they see the person three times a week and are involved in their care. So after they meet the inclusion criteria, then we do one longer interview that usually takes about an hour and a half on the telephone.

In that interview, we would ask them a little bit about their family history, we have some open-ended questions. And then we just kind of ask some standard caregiver questions about how stressed they feel, that kind of thing. And then we do eight daily diaries after that. So for eight evenings in a row, we call in, and those take about 10 to 15 minutes, and we just asked about the help they provided that day. It’s nine days total. We do compensate people for their time. So if they do all nine days, we send a $110 gift card to them, and also resources for whatever state.

In West Virginia, there’s the FAIR program that provides respite services for family caregivers of people with dementia. If somebody has a particular issue with getting their relative in the shower, which is a common thing, we might send tip sheets from the Alzheimer’s Association about that particular issue.

Douglas: What’s your end goal for this research? 

McCann: The goal is twofold. First of all, it is to understand how these demographic changes that I mentioned earlier, such as divorce and re-partnering, families becoming smaller in the younger generations and movement, even in the Appalachian region, people may still move just within the region, but they’re still farther away. So we want to understand how these larger demographic changes are impacting families in caregiving situations. 

The second one is focused on this service use. How we can help families overcome barriers to service use. Is it financial? Is it the person who has dementia doesn’t want services? That’s very tricky to handle. Just helping understand what barriers these families might be experiencing so we can provide better support to families. Because we know that families need more support. 

To participate in this study at Virginia Tech, call 540-231-9250, send an email to carex@vt.edu, or visit their website and fill out the online form.