State Grant Helps Riverstone Expand Support for Dementia Caregivers

Yoga, dance and exercise provide respite from the demands of caregiving.

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By Caroline Kimeu

“Let’s just breathe for a few minutes,” said the yoga instructor at Riverstone Senior Life Services on Fort Washington Avenue in Washington Heights. Everyone sat in a circle, eyes closed, in a room silent except for the sound of exhalations and the soft chime of a Tibetan singing bowl. Seated on chairs, backs straight, the participants were ready to start Riverstone’s new yoga self-care class for people caring for loved ones with dementia.

Jane Spielman, taking the yoga class after a support group meeting, cares for her wife with dementia, and does yoga and meditation every day. She says they help her stay sane.

“This job of full care for somebody is so completely involving of my entire self,” said Spielman, 71. “Yoga for me is a way to be connected to my body, and by being connected to my body, I can bring the most compassion to a very difficult situation.

Since it received a five-year grant from the state health department in 2016 to help support “underserved caregivers”, Riverstone has developed a number of free programs for dementia caregivers in Washington Heights, Inwood and West Harlem.

Using the $500,000 grant, it now offers individual and group counseling, helps arrange home care and Meals on Wheels, and helps finance temporary home care and adult day care. Riverstone also provides free legal assistance with advance directives, and referrals for long-term care and financial planning.

Around 170 caregivers have used its grant-supported programs so far, Riverstone says, including 30 who regularly attend its caregivers’ support groups. Though Riverstone started the groups in 1994, they have evolved considerably.  It now hosts one group for Spanish-speakers and two in English, each meeting twice a month.

Jane Spielman during yoga class.

Its members, primarily women, are white, African-American and Hispanic, almost in equal shares. “Women are likely assigned as caregivers more often, or perhaps are more prone to seeking help than men,” says Carmen Nunez, director of the memory center at Riverstone.

Caregivers in the support groups range in age from 40 to 75, usually daughters, though the center has seen an increase in spouses over the past two years.

The grant has allowed Riverstone to add free self-care activities for caregivers – like yoga, dance and exercise – after each support group meeting. “It helps quiet their minds,” says Lindsay Fernandez, assistant director of the memory center.

“Caregivers are often running around doing one task or another” with little idle time, she added. “This time allows them to be in a relaxed and free state of mind where they won’t have to worry for those 30 to 45 minutes.”

Caregiving can be demanding. Twenty-nine percent of those caring for dementia patients say they face great physical strain, according to an Alzheimer’s Association report.

“Many times, people might be quite stiff or not in very good physical condition because they are so busy with caregiving. Yoga is a gentle way to get them more aware of their bodies and to give them some tools that they can use to begin to get healthier and to feel better,” says Dr. Susan Gould Fogerite, an expert in integrative health and yoga at Rutgers School of Health Professions.

Beyond the physical demands, close to 60 percent of dementia caregivers rate the emotional stress of caregiving as high or very high, and around 40 percent suffer from depression, says the Alzheimer’s Association report. “It’s that long-term chronic stress response that often eventually results in depression and significant kinds of anxieties,” says Margaret Swarbick, director of practice innovation and wellness at Rutgers University Behavioral Health Care. “Immunity is affected over time when your stress response is constantly on, so it does put people at risk for other illnesses,” she added.

Caring for a loved one with dementia often becomes more stressful and demanding as the dementia progresses, requiring more medical appointments, more legal decisions and more care responsibilities. “Everything increases except the money,” says Nunez.

“Caring for a parent with dementia can be particularly difficult because roles are reversed,” Fernandez said.  “The child takes on the role of ‘the parent’ and has to see after everything,” she said. “Oftentimes, adult children have their own families, their own stresses, and their own work life that is interrupted by the disease.”

Jane Spielman stretches during yoga class.

Deboria Pogue, 66, a support group member, knows too well what this can be like; she was the primary caregiver for her mother in the initial years after her Alzheimer’s diagnosis. Pogue was a single parent with a young son, working full-time while dealing with agencies to help her mother qualify for Medicaid.

Pogue says things are both easier and more difficult now. Her mother has become bedridden and has lost her capacity to communicate. “My mother is a shell of a person now,” she said. “She has no cognition in terms of what goes on around her. I still talk to her but she does not communicate back.”

In terms of care, though, Pogue now has 24-hour assistance from home aides who handle her mother’s physical needs. “I’m fortunate she is on Medicaid,” she said. With that help, Pogue can work, date, exercise almost daily and take classes at Harlem Swing Dance Society.

That option of home care isn’t available to all caregivers, however.  Nearly 80 percent of people with dementia need help with daily care like bathing, getting dressed or eating, and about one-third of dementia caregivers deal with incontinence, the Alzheimer’s Association reported.

Providing emotional support that care recipients may not able to reciprocate can be particularly difficult for spouses.

Vivian Dixon, 73, an administrative assistant and support group member, has cared for her husband Robert since he was diagnosed with dementia in 2002. The hardest part, she says, was accepting that “he can’t remember how to be a husband. He can only remember how to be a dementia-patient.

“He doesn’t remember your birthday. He doesn’t remember Christmas. You know, things that other wives still experience, I don’t.” Dixon also struggles to deal with Robert’s repetitive habits, a common difficulty. Her husband, who’s 75, incessantly asks her what time it is.

Faced with such behavior, “caregivers take it personally at times. But it’s not about them; it’s the disease,” Fernandez says.

(Photos by Caroline Kimeu)

 

 

 

 

 

 

 

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