Creatively Supporting Family Caregivers
May 22, 2019 | by Gene Mitchell
Family caregivers are underappreciated heroes, whose invaluable contributions to the care of vulnerable older adults must be supported by the aging services field.
Family caregivers are underappreciated heroes, whose invaluable contributions to the care of vulnerable older adults must be supported by the aging services field.
The National Alliance for Caregiving and AARP estimates that 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months. The National Academies of Sciences, Engineering, and Medicine estimates there are more than 17 million people in the United States who are family caregivers of someone age 65 and older. To narrow things further, Alzheimer’s Association data suggests that 15.7 million family caregivers care for adults living with Alzheimer's disease or other dementias.
AARP data also suggests that the economic value of services provided by informal caregivers was $470 billion in 2013 (which exceeded the value of paid home care and total Medicaid spending in the same year), meaning it is surely well above half a trillion dollars by now.
If the nation cannot do without family or “informal” caregivers, the same is true for the aging services field. LeadingAge members are aware of the benefits they provide, and the often severe challenges and pressures they face.
We spoke to LeadingAge members, academics, and advocates to learn more about how best to help this vital and underappreciated population.
Well-Spring Solutions, part of The Well-Spring Group, offers home and community-based services in Guilford Co., NC. Services include: private duty home care; Day Advantage, an adult day program/day health center; Connections, group respite programs at 3 sites; and medication management services.
According to Chip Cromartie, executive director of Well-Spring Solutions, the organization touches about 1,600 individuals per year, 600 of them older adults who are directly receiving the adult day or home care services. The other 1,000 are family caregivers receiving services specific to them.
“We recognized these caregivers are under a lot of stressors—physical, emotional, and economic. We felt we could offer 2 main things: respite in many forms, and caregiver education and support programming,” Cromartie says.
A starting point for many clients is the Just1Navigator program, a free service that offers consultations with a social worker for families trying to assess their needs and understand the services available to them.
Ongoing support groups are held each month at 3 different sites; the evening groups offer a light dinner. Well-Spring Solutions also offers several free events for caregivers (though donations are accepted).
“The support groups are a great avenue for people,” says Jodi Kolada, director of business and caregiver outreach for Well-Spring Solutions. “It’s a safe and confidential space. There’s a lot of laughing and crying. Because they’re in the company of other caregivers who get it, they are more apt to share.
“The underlying [idea behind] everything we do is the importance of self-care,” Kolada adds. “Our support team is really driving that home. Part of taking care of someone else well is to take care of yourself, and part of that is asking for help and accepting it when it’s offered.”
For some caregivers, asking for help is difficult, Kolada notes. “You get a sense that what they really need is a break. They need family to step up more. Some say they need financial resources. At the end of each education session, we give them a chance to write down the topics they want covered or need help with. They might need info about legal planning or how to get affairs in order, and we try to meet those needs in a future education session.”
Cromartie and Kolada say that clients end up helping each other while connecting at support groups or events.
“They share resources with each other,” Kolada says. “I’ve had a couple of people tell others how Powerful Tools has helped them, and [they] encourage others to sign up.”
Cromartie notes that only about 25% of the people attending the caregiver support and education events have loved ones who are actually receiving services from the Well-Spring Group. Kolada estimates that 70% of the caregivers served are caring for spouses or partners, and 30% are adult children caring for parents.
Laura Lamb’s perspective on family caregiving has evolved not only out of her profession, but out of personal experience as well. Lamb, president and CEO of Cincinnati, OH-based Episcopal Retirement Services (ERS), says, “We’ve cared for 4 of my family members throughout my 25 years at ERS, and each time we care for a family member, I think there is no better experience than to see that care when you are someone who works in this business.”
For ERS, community outreach is a priority when serving family caregivers. It holds an annual “Refresh Your Soul” conference, hosted by Xavier University, that brings hundreds of caregivers together (650 at the most recent one) for a day. Attendees listen to prominent keynote speakers and attend breakout sessions. Speakers have included physician and activist Patch Adams, Mitch Albom (author of Tuesdays With Morrie), neuroscientist Lisa Genova (author of Still Alice), and Kathryn Spink, biographer of Mother Teresa.
ERS has also partnered with the University of Cincinnati, the city of Cincinnati, and the Alzheimer’s Association to create Dementia Inclusive Cincinnati, which is designed, in part, to “shape communities around people with dementia and their caregivers.”
“We are providing more robust family support groups, and education to local businesses, libraries, grocers, banks, and restaurants,” Lamb says. “We’ve been training the community, and what that has brought about is a need for caregiver training. We’ve partnered with the University of Cincinnati to develop content.” That program includes 2 hands-on training sessions for family caregivers.
The latest effort applies improv skills to caregivers—both family caregivers and ERS staff. Lamb, who says she is “a closet actress,” had improv training in a leadership class and was so impressed she wanted to try applying it to working with people with dementia.
“Improv […] changed my view of leadership,” Lamb says. “It is about saying yes and building on it, and our society is about saying no, and that drives me crazy.”
A pilot of the 2-part improv training has just been completed and Lamb says the feedback was very positive. One person said, “Wow, if I change the way I interact I’ll get a different result.” ERS has hired an improv expert to teach physicians and caregivers to use active listening techniques to improve communication.
Leah Eskenazi, operations director for the San Francisco-based Family Caregiver Alliance (FCA), says assessment of family caregivers’ needs is vital to serving them properly. Unfortunately, she says, assessments aren’t often done.
“For the most part, [what’s done is] an assessment of how the family member can better learn the tasks to care for the person needing the care, rather than really assessing the caregiver,” Eskenazi says. “First, do they really want to be providing care, and if so, what do they need to make that possible? Do they have a chronic illness? Resources to bring to bear? Family dynamic issues? Are they working? Are they dealing with depression? Are they isolated?”
Eskenazi says there have been studies showing that some caregivers have died sooner than the care receivers, because they were not adequately seeing to their own health.
“Maybe they haven’t picked up the signs of cancer, or haven’t taken time to go to their own doctor appointments, because they need to focus on the person they’re caring for,” she says. “Or, they feel guilty because the other person is worse off—'So I’ll put off my own needs.’ Sometimes this puts people in a precarious health situation.”
FCA has a curated assessment tool that it uses in its own work, but also offers the Caregivers Count Toolkit, which other providers can use to develop their own caregiver assessments.
FCA has its own team of social workers who provide direct services in its home region, the San Francisco Bay Area, but also offers education and resources via its website. One of the most useful features is its Family Care Navigator that allows users to locate public and nonprofit programs across the U.S. FCA also offers online support groups (general caregiver and LGBTQ+ caregiver).
ERS has a working relationship with the Neuroscience Institute at the University of Cincinnati. Dr. Rhonna Shatz, a neurologist and associate professor at UC who specializes in treatment of patients with cognitive difficulties and Alzheimer's disease, is a source of expertise for Lamb and her staff. Speaking of staff, Lamb also draws on their expertise: “There is no better resource than aides that are caring for [people living with] dementia 24 hours a day. You learn so much—by having to get through a shift of anger or anxiety or sadness—that you can’t learn in a focus group.”
ERS gathers data at the annual Refresh Your Soul events, and as part of its Dementia Inclusive Cincinnati work. The latter started with a series of focus groups in many Cincinnati neighborhoods, which informs the organization’s caregiver resources.
“What we found is that Cincinnati is a diverse and neighborhood-based place, so what works in one neighborhood may not help in another,” says Lamb. “We have a citywide initiative working on the banks and libraries and restaurants, but we have a very specific neighborhood approach.
“As a nonprofit, we have a moral and ethical obligation to give back to our community,” Lamb continues, “and this is the way we’re doing it. We don’t charge anything for our training or services for caregivers.”
Lamb says ERS doesn’t have staff who work only with caregivers. A parish health ministry program sponsors Refresh Your Soul and does other health ministry activities. She says about half of ERS’ managers volunteer in some way as part of the caregiver strategy.
“That might mean they help with registration for Refresh Your Soul; it might mean they teach in the improv training; it might mean [one of them serves] on the community board in the neighborhood where she lives,” says Lamb.
Asked to describe the major hurdles family caregivers face, Well-Spring’s Kolada reframes the issues: “I don’t necessarily see them as hurdles or bumps in the road, because they’re overcoming some big issues, like feelings of guilt or grieving multiple losses. These things linger. They lose companionship with their spouse, and lose freedom and spontaneity. It’s a journey they are on, but you’re not just jumping over the hurdle and leaving it behind.”
Cromartie says the emotional and economic challenges of caregiving can be very difficult, but that we can’t forget that some caregivers are also doing physically demanding work in caring for their loved one.
Kolada agrees: “They put physical demands on themselves but they’re also neglecting their own doctor visits; they put themselves on the back burner.”
Most of the help available to family caregivers, and most of the discussion about them, concerns those millions of Americans caring for family at home. But some researchers are studying the needs of another group: people who have placed a family member in a long-term care setting—assisted living or skilled nursing.
The Residential Care Transition Module (RCTM) is “a 6-session, 4-month psychosocial intervention designed to help families manage their emotional and psychological distress following residential care placement of a cognitively impaired relative.”
One of the researchers, Joseph Gaugler, Ph.D., says his group is in the middle of a study of the RCTM’s efficacy that could involve up to 300 families and is to be completed in 2021. Gaugler, professor and Robert L. Kane endowed chair in long-term care and aging for the School of Public Health at the University of Minnesota, joined 2 colleagues in writing a 2015 paper on an earlier pilot program. That paper, A Pilot Evaluation of Psychosocial Support for Family Caregivers of Relatives with Dementia in Long-Term Care, was published in Research in Gerontological Nursing, Vol. 8, No. 4, 2015.
Participants are given a baseline survey to start. The RCTM then includes 6 sessions with 1 of 2 transition counselors, Tamara Statz, M.A. (a licensed marriage and family therapist), and Robyn Birkelan, Ph.D., a clinical psychologist. The first 3 sessions are approximately 1 week apart, and the last 3 are approximately 1 month apart.
Transitions counselors first build rapport with the family members, learn more about the families, and identify key topics for exploration. Subsequent sessions use “psychosocial consultation, mindfulness practices, and cognitive-behavioral and narrative-based therapeutic techniques to reduce the family member’s perceived level of stress and strengthen resiliency.”
Gaugler says that emotional support is of great importance, but is not enough.
“It’s very valuable, initially, that people realize they’re not alone,” he says. “It makes them more willing to engage with the counseling process. We need to go beyond that to start to identify what’s going on in a person’s life, what’s going on in the family, what’s going on with staff dynamics, and try to identify and pinpoint the issues and come up with solutions for those family members.”
“There is a lot of emotion around caregiving in general, but especially this kind of transition,” Statz says. "There are feelings of grief or guilt that people aren’t necessarily going to choose to talk about, or know where to go to talk about. [We give] them the opportunity to talk to someone who […] is a neutral presence who can help them explore how they’re feeling about this process and this transition, and likely whatever else is going on in their family related to this transition.”
Gaugler says he hopes that if the RCTM intervention is shown to be efficacious, some kind of certification process might be developed for provider organizations—a way for them to position themselves as saying, in his words, “we can deliver this for families.”
Gaugler encourages long-term care providers who want to be involved in the study to contact him at email@example.com.
Editor’s note: Gaugler is also studying ways to better help family caregivers who have loved ones in adult day programs. See the article, “Adult Day Services Plus Program Studies Better Ways to Help Family Caregivers."
Do shrinking family sizes, and geographic dispersal of family, put more pressure on caregivers?
ERS’ Lamb believes that is the case..
“First, families are smaller, and second, they are spread out,” she says. “We might have an elder in Cincinnati or Columbus and their closest children are 200 miles away. That is unfortunately a dynamic for families that are struggling. The generation we’re seeing now has children that are still working and managing their Millennial children. The pressure on caregivers is very different from when my Mom was growing up, and had the luxury of a sibling being retired or not working.”
“It’s an interesting question,” says FCA’s Eskenazi. “In some cases, like a large family with dysfunction, size can make caregiving more difficult. In other cases, families work together and get along and don’t really need a lot of outside services. One thing I do see is a lot of adult children without siblings. Once they start facing caregiving for [their] parents, it’s quite challenging because there’s a question—do they want to reach out to their network? They don’t often want to burden their friends for help.”
“When I work with caregivers, it seems like in their families, small or large, there is still that 1 person that steps up to the plate,” says Kolada. “It’s 1 who rises to the occasion, and is wondering where everybody [else] is. It’s a frustration that is shared. Sometimes when there’s a smaller family [with] 1 child, and that person is a long distance [away,] you end up having to rely on outside help, or neighbors and friends.”
Lamb thinks our field needs to do more for family caregivers.
“I want to say to providers, we have to do better,” she says. “When we talk about community benefit, we usually talk about serving people in our buildings that run out of money. That’s not community benefit; that’s serving our own. I’d like to see [us] do something that will help someone that’s not going to come to our building. Just get out in the community and find out what is needed regarding caregivers.
“My surrogate dad was served in our building. We served him OK, but we didn’t serve him well, I don’t think. And it took me seeing it as a family member to see that we failed in so many ways. And I was in charge of the area that he was in! If it’s difficult for me, […] how can I expect someone in the community that is working, has children, that doesn’t understand our overly complicated field, to do it?”
Eskenazi believes providers should consider family caregivers as partners: “See the caregiver as someone you want to know more about,” she says. “Find out what their needs and interests are in addition to the resident’s.” She also reminds providers that there are a lot of younger people who are family caregivers: “People tend even less to ask younger people if they’re a caregiver just because they’re younger; they could be very much involved in caregiving. It’s important not to assume.”
Cromartie thinks the aging services field ought to do more to help employers understand the challenges families are facing, not only with children but with older family members.
He also believes elected officials fail to recognize the burden that family caregivers take off of society—all the more reason for giving them more support. “When families are caring for loved ones in the home, it’s a huge burden for the them, but a savings for the taxpayer,” he notes. “The more we can support these caregivers it’s a win for everybody.”
He says physicians and their teams should also recognize that in essence they’re caring not only for the person who is frail, or has dementia or chronic disease, but for the family caregiver too.
Kolada is impressed with the way people in our field share resources and collaborate to raise awareness about caregiver issues. “And so many professionals are gracious with their time to help us, from the Alzheimer’s Association to elder law attorneys,” she says. “I feel there’s a nice relationship and collaboration to help seniors and caregivers in the community.”
Provider Funds Innovative Caregiver Programs
Kendal Charitable Funds, the foundation arm of the Kendal Corporation, awards Promising Innovations Grants to support innovations in serving older adults. A couple of recent grants supported family caregivers.
In 2015, $20,000 was awarded to Saint Barnabas Medical Center in Livingston, NJ, part of the RWJBarnabas Health system.
The money funded a year-long Caregiver Boot Camp program. The initiative provided education, empowerment, and support to family caregivers of elders who exhibit behavioral and psychological symptoms of dementia.
“The challenge is how to meet the needs of all of those people,” says Beverly Grove, executive director of Kendal Charitable Funds. “In Saint Barnabas’ case, these are unpaid caregivers trying to deal with the cognitive deterioration of individuals that is often displayed in physical or behavioral outbursts.”
Grove says the grant allowed a program that invited local residents to attend educational sessions where physicians walked them through not only the progression of Alzheimer’s, but also alternative ways to address physical or behavioral outbursts. The sessions also allowed participants to gain a network.
Another caregiver-related grant went to the Michigan ACLU’s LGBT Aging Project, designed to create a network and resources for LGBTQ older adults. Grove says her organization wanted to fund an initiative for an underrepresented group.
“This is for individuals who are 70-plus years of age, who might have lived in the shadows their whole lives,” Grove says. “A lot of people still live in the shadows, and often have lost family connections, or didn’t have strong neighbor relationships. They are left isolated from the get-go.”
The LGBTQ aging project did a presentation at a national AAA conference and was publicized in Detroit newspaper articles.
Gene Mitchell is editor of LeadingAge magazine.