Caregivers to find help with support network

At some point in most people's lives a loved one will come to an age or an illness that requires daily managed care. Whether it is helping elderly parents to feed, wash and clothe themselves or the more difficult task of caring for someone suffering from Alzheimer's or another disability that requires intense levels of care, in Washington County those care-giving tasks often fall to family members. A recent and successful grant proposal by Eastern Area Agency on Aging (EAAA) and other collaborators such as Washington Hancock Community Agency will create a caregiver resource network in Hancock and Washington counties. According to the grant, 40% of caregivers in the Downeast region are 35 to 49 years of age, 26% are 50 to 64, and 12.4% are 65 or older. Almost three-quarters of these informal caregivers are women.

The Weinberg Foundation will fund the three-year program, Developing a Rural Community Based Caregiver Network and Support System, that will be implemented in Washington County during the second and third years of the grant. "Right now caregivers are quitting their jobs because they don't know about their options," says Noelle Merrill, executive director of EAAA. The grant specifies that care-giving resources to be developed in Washington County "will be built by using the rural best practices model developed and documented by the Friendship Cottage Caregiver Resource Center."

The caregiver model

Friendship Cottage is a Blue Hill-based facility that provides adult day services as well as caregiver resources that include a library, monthly support meetings, quarterly retreats and specialized training. The cottage was opened in July of 2008 and is a medical model, which allows staff to administer medications, give showers and provide snacks and meals — all tasks that significantly reduce the strain on a family member's time spent on care-giving. The cottage also provides transportation. Already Anne Ossanna, the program site manager, says she is seeing the benefits of the two-pronged approach to adult care-giving. "When we first started, the monthly support group for caregivers was really active. But then it slowed down." When Ossanna asked why attendance had dropped, she was told that the adult day service provided such a break to the caregivers that they felt they didn't need to meet as often.

Merrill says of the model, "There's definitely a need for something like a Friendship Cottage in Washington County."

Finding those resources is a key to the health of the caregiver and those who receive that care. For the county, this will start in the form of a "navigator," or caregiver advocate, who will be located at the Regional Medical Center at Lubec, starting in the fall of 2010. "This will increase our capacity," says the center's CEO, Marilyn Hughes. "Caregivers will have additional resources to help keep elders in the community rather than going to long-term institutional care. The need is greater than the capacity we have right now," she adds.

A steering committee will help guide the grant-funded collaboration. "There is built-in flexibility," Merrill says about how the actual program is structured. But she notes that EAAA needs members from Washington County on that committee. "We want information from first-hand caregivers and people who can tell us what the needs are." EAAA also needs regional advisory council members to help define local needs. "The council is based in the county, and we will bring the administrative support to them." Frances Raye, a resident of Perry and mother of Senator Kevin Raye, is the only county member on the council, Merrill notes. "We need at least four, but the council can be as large as necessary."

A recent example of the effectiveness of local input was brought home to her when Merrill attended a meeting in Eastport "where there was an outcry about transportation." Since then, one of EAAA's collaborative partners, WHCA, has committed to addressing the issue.

Sustainable day programs for elders

Taking the caregiver advocate position to the next level, creating sustainable day programming for adults with a range of needs, will be a long-term challenge for the county. Charles Clemons is the chief operating officer of the Charlotte White Center, an organization based in Dover-Foxcroft that has a facility in Cherryfield for adults with cognitive disabilities. "We originally looked at a combination elder daycare and mental retardation facility, but when we looked into it, there was not enough population [in Washington County] to support a general need daycare. I know there are many elders down there who could use day sessions, but we couldn't figure out how to make it feasible." He, too, cites transportation as a difficulty. "When a caregiver has to transport for 40 minutes, that cuts into time and budget," Ossanna remarks.

Transportation is one of the keys to successful care-giving, says Ossanna. Tanya Berry, program director of the Machias-based Robert and Mary's Place, believes that "geography plays a part," but as someone who grew up in Washington County, she thinks there may be more to the problem of sustaining an adult day program than lack of access. "People tell themselves and their parents that they will take care of them until they die." But, she says, at some point most end up having to place their elderly parent in a nursing home. Placing the parent in a day program, she says, allows "the parent to socialize, which is so much better for them, and so much easier on the caregiver." The long-term benefit to both allows for that child and parent to live side-by-side for a much longer, healthier time. Currently, she reports, Robert and Mary's Place, which also has a part-time facility in Ellsworth, is open two days a week and only has one participant from Washington County. "Our facility is open all day, but we don't require that someone be here all day." Even just a three-hour visit can benefit both the adult participant and the caregiver in need of a break or time off to pursue such tasks as a doctor's visit.

"People do better in their homes," says Ossanna. "And it's actually cheaper. That's where an adult day service really helps." She notes that having an adult in a day program for only one day a week helps reduce stress on the caregiver. "We have a number of adults [at Friendship Cottage] who would be in a nursing home but are able to be at their homes at night because of the medical model day service we have."

EAAA is aware of the sustainability factor. Merrill says that sustainability occurs "once adult day services break even by pulling in enough people." Accessibility and visibility need to be increased, and a portion of the grant addresses these issues, she says, with a marketing component.

Ossanna believes that sustainability is more likely to happen if day service facilities do not limit themselves to specialties. "They need to get contracts with all the different payment providers. It's hard work," she says of all the paperwork involved. "It's key for a day facility to get all the contracts that they can."

Merrill notes that there is a second and less obvious key to sustainability that is incorporated into the grant: the long-term need for professionals who specialize in fields related to gerontology. "Our population is aging," Ossanna concurs. "There is going to be a real shortage of people caring for elders." Connecting school children of all ages to the elderly and their needs will be increasingly important in order to help them become future professionals that range from nutritionists, occupational and physical therapists to gerontology pharmacists.

Ossanna has been working on this aspect of the sustainability model at the cottage. High school students volunteer for community service requirements at the cottage and for caregivers with such tasks as shoveling snow, stacking firewood and sharing computer skills. Younger students come to perform concerts. A student working on her master's degree in social work assists both caregivers and the cottage's elderly. Ossanna says, "This allows her to decide whether this is a career choice she wants to pursue."

Expanding caregiver resources in Hancock and Washington counties through the grant project, Ossanna says, "is wonderful news for caregivers."