A researcher who is designing an intervention to help long-distance caregivers discusses the complexities of this journey.
Posted in , May 20, 2021
Caregiving is a challenge from any vantage point. But it presents unique stressors when you can’t keep eyes and ears on your loved one because you live far away.
When Verena Cimarolli set out as part of a research team to learn more about the challenges that face long-distance caregivers, most studies had been focused on caregivers who live close by their care recipients. With a grant from the National Institute on Aging, the researchers conducted a study on family caregiving from a distance.
Two-thirds of long-distance caregivers sampled in their study mentioned at least one distance-related challenge. The most prominent were related to difficulties:
Close to 50 percent of long-distance caregivers in their sample were helping an older adult who was living in the community and experiencing significant cognitive impairment. This group of caregivers reported levels of burden, depression, and anxiety that were higher when compared to long-distance caregivers with care recipients living in a nursing home.
Cimarolli, director of Health Services Research and Partnerships at the LeadingAge LTSS Center @UMass Boston, is now working with a colleague from that study to design an intervention that would alleviate some of the challenges of long-distance caregiving. She discussed with Guideposts.org what makes long-distance caregiving complex and what the caregivers in her study said about dealing with their challenges:
Q: Why is it so challenging to connect as a caregiver from a distance?
A: It has to do with not being able in the moment to react and attend to situations. For example, if somebody has dementia, especially as it advances, they get agitated. If you are there as a caregiver, you can help. You can say, “Oh, they don’t like the loud music,” or, “They just heard the bus on the street. We’ve got to close the window now.” But when you are far away, you can’t make any of these immediate adjustments that make things better for the person with dementia. So, it’s sort of this constant worrying that everything is okay.
We’re talking about living at least two hours travel time away. You can’t just pop by. You constantly feel like you can’t just resolve things quickly. Also, what came up in our study was that the traveling to see the care recipient is causing physical and emotional strain and also it costs a lot of money. It takes time. If you have to plan for, let’s say a monthly trip, that’s going to be a big disruption, not just to your work but also to obligations you may have to other family members.
Q: Do long-distance caregivers have higher or lower levels of burden, depression, and anxiety than do caregivers who live near their loved ones?
A: What we do know—and this is not something necessarily that our researchers found, but that other researchers found—is that long-distance caregivers are at least as stressed and burdened by caregiving tasks as the geographically close caregivers. You would think that because they’re not close by, they don’t experience a lot of the stresses, right? But they experience significant levels of caregiver burden, and that is particularly true if the care recipient lives in the community and if the older person has dementia.
Q: Why is that?
A: The long-distance caregiver makes a lot of the arrangements from afar, and that needs to be done in terms of making sure that the care recipient is okay, and they need to make the time to visit them. When they visit, it can be pretty intense because they may stay for a couple of days or a week. Plus, with every caregiver, locally or far away, it’s something that is always on your mind. Is that loved one okay? And, especially if somebody has dementia, it’s always, is that person safe? If you are far away, it can also mean you feel guilty. But what we also found was that sometimes just moving closer can’t happen because the care arrangement is dependent on where the care recipient lives. If the care recipient is in a nursing home, they have everything arranged there, so it may sometimes be difficult to move, plus you’re taking them out of their trusted environment.
Q: What formal services did the caregivers in your study have difficulties arranging and why?
A: Services like nursing home care, assisted living, independent living, or what we call home- and community-based services which include home care and adult day care. It’s hard enough, with the array of services that are available, to find the right provider if extra help is needed. But it’s even harder to do it from afar because you don’t have that personal connection with the formal care providers. If you as the caregiver have a relationship with that formal caregiver—like with the home care aide—you can talk about issues that you have with the way that they’re providing the care. But if you are doing this from afar, it’s probably over the phone and it’s often happening when there are real problems.
Q: Did any of the caregivers in your research discuss how they overcame challenges of long-distance caregiving?
A: At this point, I don’t have the data analyzed in a way that I can tell you this is what the caregivers did to overcome the challenge of not being able to monitor their care recipients’ well-being. I can tell you overall what they said in response to any of the distance-based challenges that they experienced, and what they were suggesting:
For more information on long-distance caregiving, including tips on how to navigate the challenges, go to: https://www.nia.nih.gov/health/caregiving/long-distance-caregiving