It may sound cliche?, but in order to provide care, caregivers need to take care – of themselves. It is especially important for those looking after individuals with Alzheimer’s disease and dementia.
According to the 2015 Alzheimer’s Disease Facts and Figures report from the Alzheimer’s Association, last year caregivers of people with Alzheimer’s and other dementias nationwide provided an estimated 17.9 billion hours of unpaid care. More than half of those caregivers take care of parents, two-thirds are women and 34 percent are age 65 or older.
The report shines a light on the toll constant care for family and loved ones has on caregivers. Close to 60 percent of those surveyed for the report rate the emotional stress of caregiving as high or very high, with 40 percent reporting that they suffer from depression.
With the number of Americans with Alzheimer’s disease and other dementias expected to grow each year as the size and proportion of the U.S. population age 65 and older increases, support for caregivers becomes all the more crucial. Taking advantage of one or more of the numerous support groups for caregivers offered throughout Maine is among the options available for self-care.
For Susan Bertin, the life guidance director at Atria, an assisted-living community in Kennebunk, providing a place for caregivers to turn is an important part of her work. Atria offers a support group at 1 p.m. on the third Wednesday of every month, which Bertin facilitates.
“Stress and issues with family dynamics are a common thread for caregivers. We provide a forum for caregivers to come in and talk and connect with others in the same situation,” said Bertin.
Bertin said Atria partners with the Maine Chapter of the Alzheimer’s Association, which provides guest speakers on specific topics at some of the meetings. Atria also offers an in-service virtual dementia tour both for caregivers and professionals and provides informational literature and handouts for those that come to group.
“People who participate (in the group) gain support from others through listening and asking questions,” said Bertin, who added that caregivers without a support network often feel isolated. “They are exhausted, feeling stuck – that they’re doing it alone.”
Ann O’Sullivan, a family caregiver support program coordinator at Southern Maine Area Agency on Aging, finds that caregivers “get a lot from just being in the room with people who get it.”
“Other caregivers get how difficult it is and they can also share the moments of delight,” said O’Sullivan. “Support group facilitators are there to make sure that everyone who wants to talk gets a chance. They also serve as a resource person, offering guidance with behaviors. Each of our facilitators has background and experience and can help caregivers develop strategies.”
Bertin said just listening is at times the best thing she can offer to caregivers.
“They can call me, just to talk,” she said.
O’Sullivan also encourages caregivers to reach out.
“Let’s talk through what’s going on. We have resources, training, and problem solving experience to help improve the situation,” said O’Sullivan. “We want caregivers to know they are not out there totally on their own.”
Caregiver support groups are not limited to the in-person variety. In addition to a large network of face-to-face group meetings, the Maine Chapter of the Alzheimer’s Association offers a statewide telephone support group on the second and last Thursdays of each month from 10-11:30 a.m.
Bill Kirkpatrick, program director for the Maine chapter, said the idea came about a few years ago.
“It grew out of the realization that it was hard for some folks to make it to support groups, perhaps because they live in a rural area or their role as caregiver doesn’t allow them to get out to a group meeting,” said Kirkpatrick, who shares facilitation of the group with colleague Peter Baker, the chapter’s helpline services manager.
Kirkpatrick said the no-cost telephone support group, which went from one meeting a month to twice a month, runs in the same way an in-person group does.
“It is a toll-free access conference call. We start with an explanation that it is confidential and that we are available through our helpline for individual care and other services,” said Kirkpatrick. “It is not for everyone but some like the anonymity of not being face to face. It can be challenging not being able to see each other, as you do lose the non-verbal communication. But the key point is it is an additional support for caregivers that can be used instead of, or in addition to, face to face groups.”
A program offering information about dementia and its impact, and teaching the skills needed for effective caregiving is another avenue of support being offered in Maine.
The “Savvy Caregiver” project, a program sponsored by the Office of Aging & Disability Services, Department of Health and Human Services, with funding from an Alzheimer’s Disease Supportive Services Program grant, is offered at various locations in the state including through the Southern Maine Area Agency on Aging. The no-cost six session course offers training for caregivers of individuals with Alzheimer’s and dementia.
Whether support is found in a group meeting, a training class, or in another way that makes sense for the individual, dementia-care professionals encourage caregivers to reach out to develop a network of support.
“Everyone needs something different,” said Lauren Scogin, social work director for Durgin Pines, an assisted living facility in Kittery. “There’s no right way to do this (be a caregiver). It’s hard when a caregiver has to face their own isolation, as supports they may have had can drift away. If you can identify what you need, come up with a tangible thing, so you can say “this would really help me,” it can make a difference.”
Scogin facilitates a support group that meets on the first Thursday of each month at 2:30 p.m. at The Gathering Place complex, a private adult day center in Kittery. While meetings are free, for a fee The Gathering Place can provide respite for dementia patients while their caregiver attends the group session.
A support group meeting through the Southern Maine Area Agency on Aging at the Bridgton Community Center for caregivers of an older adult or person with dementia follows on the heels of a senior lunch, at which caregivers and their charges are welcome to share a meal. Onsite respite is available during the support group session.
“Graduates of the group offered to provide respite so caregivers can go to the support group,” said O’Sullivan, who facilitates the group when needed.
Part of Mid Coast Hospital in Brunswick, Mid Coast Senior Health Center provides free support-group offerings to the community. Amy Berube, marketing and outreach coordinator for the center and CHANS Home Health Care, is also a licensed master social worker and knows the importance of providing such services.
“Coping with changing behaviors and losing someone they love along with confusion on where to turn for resources and support creates isolation,” said Berube. “We have the resources to bring in speakers followed by support group and discussion. Half the battle is knowing, and better understanding the situation both caregiver and loved ones are facing.”
Berube said members of her support group are looking for help coping and finding some sort of normalcy in the process.
“Sharing experiences helps. It’s a validation from the group that it’s not just them,” said Berube. “We want caregivers to know they are not alone. Many other family members are in a similar situation. Our culture doesn’t teach the skills needed to be caregivers, and people still have a hard time talking about it.”
Caring for someone who is losing not only the ability to communicate and other functions, but also shared memories, can be especially hard for caregivers.
“It’s an incredible sense of loss and grieving while still being present with the person,” said O’Sullivan. “Caregivers are thinking, ‘It’s hard now. What will it be like down the road?’ Not knowing what to expect can create a lack of clarity and sense of isolation.”
Because stress among caregivers for individuals with Alzheimer’s and dementia is significant and widespread, Kirkpatrick urges them to reach out for support in whatever form is most helpful.
“The health of caregivers can really suffer if they don’t take care of their own needs,” he said. “The value of connection with others who are facing the same issues and challenges is great. And knowing that others are going through it too can be a real comfort.”