Alzheimer’s disease results in progressive functional decline, leading to loss of independence. The researchers note that the results of this trial underscore the burden undertaken by caregivers as they provide care for family members with Alzheimer’s disease and the need to explore ways to help caregivers manage this burden.
Both groups in the randomized controlled study of a total of 180 Alzheimer’s patients seen at the Healthy Aging Brain Center and primary care practices at Eskenazi Health received best-practice dementia care, which the IU and Regenstrief researchers have previously demonstrated improved behavioral outcomes and reduced caregiver stress but did not halt functional decline. In this new study one of the two groups also received occupational therapy.
“Persons with dementia face a steady decline in function that we found is not slowed by home-based occupational therapy,” said study corresponding author Christopher M. Callahan, MD, founding director of the IU Center for Aging Research and a Regenstrief Institute investigator. “The participants in the study declined both mentally and functionally as the neurodegeneration of the brain continued. This is a disappointing outcome because previously published but shorter-term studies had suggested these interventions might be able to slow the physical decline that leads to nursing home placement.”
If there is no pill and no therapy to slow the pace of disease progression, what can be done? “There is a limited amount of money that we — families and society — have available for these patients and their caregivers and we should spend that money on things that patients and families find the most helpful,” Dr. Callahan said. We simply need more options to better support family caregivers as they provide care to persons with dementia.
He notes that modifications to homes such as removing risks for falls, making bathrooms more accessible, and making kitchens safer may enable Alzheimer’s patients to remain in a home environment and out of an institution longer. “Home modifications are relatively expensive but less expensive than a year of care in a skilled nursing home,” he said.
Over the two years of the study an occupational therapist traveled to the home of the patient and family caregiver, thus avoiding the burden of having to travel to treatment sessions. The occupational therapy was individualized to each patient and focused on areas of issues identified by the caregiver. For example, sessions might focus on safely bathing the patient or transfers into and out of cars. Caregivers were instructed in ways to assist their family member in activities that she or he had enjoyed prior to the disease such as gardening. Exercise was primarily chair-based with participants seated during sessions.
“Targeting Functional Decline in Alzheimer Disease: A Randomized Trial” is published online ahead of print in the Annals of Internal Medicine. Authors in addition to Dr. Callahan, who is the Cornelius and Yvonne Pettinga Professor of Medicine at IU School of Medicine, are Malaz A. Boustani, MD, MPH; Arlene A. Schmid, PhD, OTR; Michael A. LaMantia, MD, MPH; Mary G. Austrom, PhD; Douglas K. Miller, MD; Sujuan Gao, PhD; Denisha Y. Ferguson, AAS; Kathleen A. Lane, MS; and Hugh C. Hendrie, MB ChB, DSc. All are currently or formerly (Drs. Schmid and LaMantia) with the IU Center for Aging Research.
“Given the burden of caring for persons with dementia, which largely is shouldered by family members, research must focus on identifying strategies to support caregivers in the home to provide care to persons with dementia,” the authors conclude. “If the gradual functional decline attributable to Alzheimer’s disease is irreversible, a new generation of assistive devices, home modifications, community services, and technologies is needed to make longer-term support in the home a practical reality for patients and families.”
The study was funded by the National Institute on Aging.
Cindy Fox Aisen