Family caregivers’ fatigue, sleep problems may play major role in quality of care for people with dementia

Sleep significantly influences the effectiveness of care that caregivers provide to dementia and Alzheimer’s patients, according to the results of a study led by a UB faculty member considered one of the country’s foremost researchers on mental health, dementia and addiction in older adults.

“Caregiver fatigue is significantly influenced by sleep quality,” states the study led by Yu-Ping Chang, Patricia H. and Richard E. Garman Endowed Professor and associate dean for research and scholarship in the School of Nursing. “Nurses should routinely assess caregivers’ level of fatigue and provide advice on monitoring fatigue and sleep quality on a regular basis.”

Caregivers should manage fatigue by getting sufficient sleep and reducing stress, as well as seeking the appropriate health care when fatigue worsens, so that they can remain healthy for themselves and the dementia patients they look after, the study says.

The study notes that family members care for approximately 80 percent of individuals with dementia.

“These caregivers are truly at risk of developing physical and emotional problems of their own while they are trying to provide care for their loved ones,” says Chang, adding that fatigue can contribute to an increased susceptibility to illness and lead to decreased levels of energy and focus.

“Often caregivers are so immersed in providing care that they are unable to see that their own well-being is declining, leading to the both a decline in health on the part of the caregiver and a decline in the quality of care they are able to provide, which also negatively impacts the recipient.”

The study, Fatigue in Family Caregivers of Individuals With Dementia: Associations of Sleep, Depression and Care Recipients Functionality, was published this month in the Journal of Gerontological Nursing. It was co-authored by Rebecca Lorenz, Meg Phillips, Hsi-Ling Peng and Kinga Szigeti.

The study surveyed 43 caregivers of dementia and Alzheimer’s patients. Participants were asked to provide information on the associations among fatigue, depression, sleep and care recipient functionality. They were monitored for high levels of fatigue and poor sleep quality.

The study found significant associations between fatigue and depression, sleep onset latency, sleep quality and care recipient functionality. The study also measured associations among energy and depression, sleep quality and care recipient functionality.

Caregivers who reported a higher level of depression were more likely to experience a higher level of fatigue and lower level of energy,” according to the study results. “Similarly, caregivers with poorer sleep quality experienced more fatigue and less energy. As care recipient functionality decreased, caregiver fatigue increased, and energy decreased.

“Results indicated caregiver sleep quality was a significant predictor of fatigue and energy,” according to the study.

The study adds to the limited information currently available about fatigue among caregivers of individuals with dementia, according to the researchers. Chang says more research is needed on how sleep quality affects depression and caregivers’ ability to provide quality care.

“Further study in this area can help us better understand fatigue experienced by caregivers, providing insight into ways to improve the care-giving experience,” the study says. “Fatigue needs to be recognized as an important symptom among caregivers of individuals with dementia.”

Chang notes that self-care is a necessity for family caregivers. “Tending to your own physical and emotional well-being is just as important as making sure your family member gets their medication on time or is taken to their doctor appointment,” she says. “If the stress of caregiving isn’t addressed, it can lead to burnout, and then both the caregiver and the person they are providing care for will be suffering.”