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Published on June 02, 2020

Specialized support for dementia caregivers

Dementia and Alzheimer’s Caregiver Support

The COVID-19 stay-at-home order has been difficult for all of us, but the isolation creates added stress for those caring for someone with any type of dementia.

Adult day programs are closed and homecare services are more limited. Many family caregivers lost their respite care system overnight, while those whose family members are in an extended-care facility face the uncertainty of when they will be able to physically be with their loved ones again.

There is help and support available, however, thanks to Cape Cod Healthcare’s Dementia and Alzheimer’s Caregiver Support.

“We never want people to feel they are alone in their situation,” said Suzanne Faith, RN, CDP, who leads the program along with Alan Johnson, LICSW.

Cape Cod Healthcare’s program worked quickly in mid-March to move the full complement of caregiver-support services online, offering their education programs and support groups on Zoom. Their one-to-one counseling sessions for new clients or clients in crisis are now conducted by telephone or video chat to ensure everyone who needs help is able to receive the level of support they need.

Since the start of the COVID-19 crisis, calls from caregivers worried about a particular behavior have almost doubled, said Faith. Other caregivers simply need a calm listener on the other end of the phone, she said.

Faith estimates there are 15,000 people with dementia in Barnstable County among a population of 213,000, or about 7 percent. Nationally, the majority of dementia patients live at home, according to a 2017 report by the federal Department of Health and Human Services.

Those who have used the local support program in the past attest to its value at a difficult time in their lives.

Connie Murphy is one of them. She had been an Air Force flight nurse, a young widow, a school nurse, a mother to six children, and a caregiver for family members with cancer, but when her second husband, Edmond, developed dementia, she was overwhelmed at the responsibilities of caring for him.

“There are a lot of difficulties when you’re dealing with something 24/7 with no relief in sight. And things don’t get better, they get progressively worse,” she said.

Murphy found reinforcement and much-needed care for herself at the Dementia and Alzheimer’s Caregiver Support Group held at the Council on Aging in Bourne. While the Alzheimer’s support program is headquartered in a building at the corner of Bayview and Main streets on the West Yarmouth/Hyannis line, it offers support for caregivers at locations throughout the Cape.

That includes six caregiver support groups run by Faith and Johnson. Groups are managed according to standards of the Alzheimer’s Association and Lewy Body Dementia Association, just two of the many forms of dementia, and are being held online until Massachusetts safety standards allow group gatherings again.

To find out more about CCHC’s caregiver support and educational programs, you can either contact the program directly or ask your physician for a referral. You will be contacted by a member of the team member to discuss a care-management plan. Additional information on educational classes and support groups will also provided, she said.

“Caregivers are welcome to use the resource library located in the program’s headquarters, as well as receive referrals to community programs or inquire about respite grant opportunities,” she said.

All program services are free for caregivers dealing with any type of dementia.

Permission for Self-Care

The goal of the program is to surround caregivers with the support they need to keep their loved ones safe at home and lower the likelihood of hospitalization.

Through one-on-one counseling and education, caregivers are given permission to focus on themselves.

“It’s geared towards strengthening your resolve; to be a better caregiver, but also to remember that you have to take care of yourself, too,” Murphy said about her experience with the Bourne group. “It’s really important that instead of getting absorbed by the person you’re taking care of, that you have a little bit of something for yourself.”

Caregivers find it empowering to be part of a group where other people are experiencing what they are experiencing and where there is no stigma, Johnson said.

“It’s a unique opportunity for people to finally be able to let their guard down and start to talk about and admit how difficult that role is, and to learn from one another.”

Research shows that caregivers and dementia patients benefit from support and interventions, according to the National Institutes of Health. With support, caregivers keep family members at home longer, reducing the amount of time patients spend in nursing homes. Johnson suggests that both families and the medical community need to take the epidemic of dementia and the hazards of caregiving seriously and learn about available resources.

Strategies and Solutions

Murphy might seem like the perfect candidate to be a caregiver. She worked at Massachusetts General Hospital when she first became a registered nurse, then went into the Air Force. Her first husband was killed in a service-related accident when their third child was a newborn. She took some time off, became a youth minister, then went back to work part-time as a school nurse.

When she met Edmond, he was a machine-tool salesman and a widower with two children. They then had a child together. When he retired, they moved from Dover to what had been a summer cottage in Pocasset. But he was 17 years older than she and began to develop dementia in his late 80s.

Even with all her experience, Murphy found full-time caregiving to be difficult. The support she found at the twice-monthly, 90-minute meetings of the Bourne group was life changing, she said. She first went to the group about six years ago.

“Everyone in the group comes in and they go around the room and ask everyone, what are you doing for yourself? How are you doing?” she said. Members could talk about all kinds of issues and strategies, she said, and most importantly, offer solutions.

“There are people in the group that had been in it a long time and they would talk about things they had found helpful or not helpful. It’s a confidential meeting. I just found it was my salvation.”

Murphy’s husband died three years ago, and she attended a different bereavement group after that. These days she volunteers, plays bridge, hangs out with friends and keeps up with her kids. But she still stops by the Bourne group occasionally to check in. It’s a good message to the group, she said, that there is life after caregiving.

“I usually like to go back to see how everybody’s doing,” she said. “You know, you’re talking to someone, you realize you’re not the only one who feels like this. And I think for me, that was very helpful.”

To find out more about the specialized support services offered by CCH’s Dementia and Alzheimer’s Caregiver Support Program or to register for a group or the family educational series, call 774-552-6080 or email