A program that provides counselling and ongoing support for spouses or caregivers of people with Alzheimer’s disease can delay the loved one’s move to a nursing home, a recent study shows.
The study randomly assigned more than 400 caregivers to participate in the support program or receive no added support. The program consisted of an individual counselling session for the primary caregiver, followed by four sessions of family counselling and one more individual session within four months of enrolment. After four months, caregivers were asked to join a support group that was convenient for them, and were also offered ad hoc counselling.
“They or a family member could call a counsellor at any time for additional information or support,” says Mary Mittelman, the lead study author and a researcher in the department of psychiatry at New York University. “I think having that phone number that they could call — even if they didn’t necessarily do it — was very comforting to them.”
The study showed that the caregiver support program resulted in a 28 per cent lower risk of nursing home placement compared with usual care. The median time to nursing home placement for patients whose caregivers participated in the program was 557 days longer than that of the usual-care patients.
Mittelman adds that one factor that may have contributed to the success of the counselling was that the sessions were customized to the needs of each family. Some families require a lot of information about Alzheimer’s disease and what to expect when a family member is suffering from this progressive form of dementia, while others benefit more from addressing family conflicts about the best approach to care and how to provide it.
Linda Jackson, director of social work at the Baycrest Centre for Geriatric Care in Toronto, says caregiver support in Canada may depend on the network of the diagnosing doctor, and on local resources and availability. Finding the right service can be a challenge.
“There are very few programs like Dr. Mittelman’s that go beyond assessment. The frequent complaint from people is that they get initial information, but don’t necessarily have ongoing support,” she explains. “You can get information about Alzheimer’s disease, you can get information about resources. But actually what a lot of people are struggling with is the actual personal impact on the caregiver themselves of being in that role.”