Without adequate rest, caregivers struggle to aid family members with dementia

Family caregivers often experience fatigue and sleep problems, which can negatively influence the effectiveness of the care they provide to people with dementia, according to a University at Buffalo study.

"Family caregiver fatigue is significantly influenced by sleep quality," says study lead author 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."

Chang researches mental health, dementia and addiction in older adults.

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.

"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 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. Co-authors include Rebecca Lorenz (School of Nursing), Meg Phillips (Kaleida Health), Hsi-Ling Peng (Oriental Institute of Technology) and Kinga Szigeti (Jacobs School of Medicine and Biomedical Sciences at UB).

The study surveyed 43 family caregivers of dementia and Alzheimer's patients. Those participating 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. Significant associations were found between fatigue and depression, sleep onset latency, 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," the study said.

The study has added 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.

Family members care for approximately 80% of individuals with dementia, Chang says.

"Without periods of rest and recuperation, fatigue only worsens and may have a negative impact on caregivers' health, subsequently affecting their ability to perform ordinary tasks and provide quality care," the study says.

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

Chang notes that self-care is key for family caregivers. "As a family caregiver, taking care of yourself is a necessity. 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."

Chang's research also includes investigating possible connections between college education levels and opioid misuse. Her work focuses specifically on geropsychiatric nursing, which merges geriatrics and psychiatrics, Chang's two fields of expertise.