Trying to ease dementia caregivers’ burden

Posted On July 14th 2013

The matriarch of John Fabiano's family still laughs easily, but sometimes she forgets things. Twenty-minute conversations leave her in a snap. But Fabiano, 67, knows this is expected from his aunt, who has vascular dementia, a condition associated with short-term memory loss.

The Waltham man, who is the primary caregiver for 87-year-old Mary Fabiano, faces the fear and burden common to the estimated 15 million Americans responsible for loved ones with Alzheimer's and related dementias. But he's better prepared for the hard moments that come with the disease than many caregivers, thanks to an expanded support network provided through his health insurance company and the Alzheimer's Association.

Three Boston health systems are now studying whether more outreach to family members, such as the services the Fabianos receive, can improve the well-being of both the dementia patient and the caregiver.

The Fabianos joined a Tufts Health Plan pilot program - which was launched more broadly in June — that pairs regular doctor visits with support from an Alzheimer's Association social worker. The staff member calls John Fabiano every few months and after his aunt has major medical appointments to check in and offer advice.

Caregivers are usually given help numbers to call, and doctors frequently mention support groups, said Dr. Andrew Budson, professor of neurology at Boston University's Alzheimer's Disease Center and lead author of the study.

But a little more effort could make a big difference, Budson said. Half the individuals in the study will receive the higher level of care: A social worker from the Alzheimer's Association will call the caregiver after the first appointment and establish regular check-in dates. That social worker will also communicate with the doctor between appointments, helping to create a wider support net around the caregiver.

Budson estimates that 80 percent of caregivers need some assistance, either from someone with more expertise in the disease or for their own mental or emotional health. But in a 20- to 30-minute doctor's appointment, clinicians don't get much of a chance to help caregivers take care of themselves or prepare for all the problems to come, he said.

The resource has helped John Fabiano prepare for what's to come.

'I didn't know where to turn to,” he said of taking care of the woman he calls his second mother. 'When she's in her — I'll call it ‘normal' state — you feel you're connecting with her and everything's fine, and all of a sudden these far-out comments come out.”

Fabiano, who has been taking care of his aunt for three years, said he feels relief knowing that his social worker will check in regularly.

The study, run out of the Boston Veterans Affairs Medical Center, Boston Medical Center, and Beth Israel Deaconess Medical Center, asks doctors to refer patients and caregivers to support services provided by the Alzheimer's Association.

Over the next four years, Budson's team will check in with caregivers about how their loved ones are faring with the additional support, but also about how they personally are doing. The group receiving the extra care will be compared with a control group receiving regular care.

In addition to improving care, the Tufts program aims to lower costs, said Dr. Paul Kasuba, chief medical officer of Tufts Health Plan -- but there isn't yet data to show a reduction.

Budson said for caregivers, numerous support networks are necessary — as many as possible.

'It's hard — really impossible — to care for a dementia patient alone,” he said.

Sanjena Sathian can be reached at Follow her on Twitter @sasathian.

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