UB project aims to ease burden on caregivers assisting older adults with cognitive decline

Anyone who’s helped an ailing loved one knows the job of a caregiver is not easy. The challenges are daily and range from lifting a spouse out of bed, to bathing, to coming to the realization that the care recipient’s condition is likely only to worsen. The challenges become harder when cognitive decline is added.

Funding from the Ralph C. Wilson Jr. Foundation will enable UB researchers and occupational therapy students to develop a program that aims to ease some of the burden on Western New Yorkers providing care for frail older adults who have dementia.

Machiko R. Tomita, clinical professor of rehabilitation science in the School of Public Health and Health Professions, is the lead investigator on the project, which has been awarded $135,000 over two years from the foundation, named after the longtime owner of the Buffalo Bills who died in 2014.

Caregiver participants will be referred by three of four Western New York-based Program of All-Inclusive Care for the Elderly (PACE) centers. PACE is a Medicare and Medicaid program that helps people meet their health care needs in the home rather than going to a nursing home or other care facility.

The UB study focuses on a model in which 10 occupational therapy students will work directly with 75 caregivers to learn more about the problems and challenges they are experiencing.

“We aren’t targeting our interventions for the care recipient. It’s for the caregiver. Many caregivers are a spouse, so they are similar age to the recipient. They may have a hip problem or muscle weakness and need help, too,” says Tomita, a veteran gerontologist who developed the Home Safety Self-Assessment Tool (HSSAT) to help prevent falls in older adults, which has been translated into five languages and used in more than 40 states in the U.S.

UB occupational therapy (OT) graduate students will talk with caregivers and administer the Zarit Burden Interview, a commonly used caregiver self-report measure, among others. They’ll also try to get an understanding of any emotional and physical issues the caregivers may be facing, such as depression, fatigue and burnout.

Next, the students will conduct a home visit to see firsthand some of the difficulties caregivers are facing. Drawing upon their occupational therapy training, the students may be able to offer on-the-spot solutions. They’ll brainstorm solutions for more complex issues with Jo Schweitzer, an experienced geriatric occupational therapist, other OT students and geriatric researchers at UB. Some solutions may involve supportive products, such as a gait belt, that can be supplied to the caregiver by a PACE center.

A month after providing specific interventions for the caregiver, UB OT graduate students will conduct a post-test to see if the proposed solution is working and to determine whether the caregiver’s burden and depression have improved. Two months after the initial assessment, they will conduct a final follow-up to assess the effectiveness of the intervention.

The UB project comes as an increasing number of people assume the role of caregiver for the frail elderly, and as cases of dementia are on the rise. Caregivers are providing $230 billion worth of medical care in the U.S., “and that’s only going to increase,” Tomita says, adding that someone is diagnosed with Alzheimer’s disease every minute in this country.

“We are living longer, so the impact on caregiving is going to be greater. We have to do something about it, and that’s what this project aims to address,” she says. “We hope to lift caregiver burden and depression by providing them more support to gain confidence in their ability to care for their loved one. Hopefully, because of that, the care recipients will be able to stay in the home longer and not have to be transferred to a nursing facility, if that is desired,” Tomita says.

“If our program is successful, it could create a model that can be distributed to other PACE programs nationally.”