Nine out of 10 people caring for a family member with dementia don’t get enough sleep, UB study finds

More than 90 percent of people caring for a family member with dementia experience poor sleep, according to new research by the School of Nursing. 

The study found that most participants got less than six hours of sleep each night, accompanied by frequent awakenings — as often as four times per hour.

These disruptions can lead to chronic sleep deprivation and place caregivers at risk for depression, weight gain, heart disease and premature death, says lead author Yu-Ping Chang, Patricia H. and Richard E. Garman Endowed Professor in the School of Nursing.

“Though memory loss is the best-known symptom of dementia, more than 80 percent of people with dementia will also experience sleep disturbances, anxiety and wandering” says Chang, also associate dean for research and scholarship.

“These disruptions have negative effects on caregivers’ health, which in turn will diminish their ability to provide optimal care.”

Nearly 6 million people are living with Alzheimer’s disease. However, the effects are felt by the more than 16 million people — often family members — providing unpaid care, according to the Alzheimer’s Association.

Past research has found that between 50 and 70 percent of caregivers have sleep complaints, but the data used in those studies was self-reported. Few researchers have taken objective measurements to gain a more accurate picture of caregiver sleep quality, says Chang.

The study, published in July in Perspectives in Psychiatric Care, analyzed the sleep of 43 people serving as the primary caregiver for a family member with dementia. All participants were over the age of 50 and lived in Western New York.

Participants were given an actigraphy watch (a sensor worn on the wrist) to measure sleep time, efficiency and awakenings in their home over seven days.

Caregivers were also required to complete a sleep diary for themselves and their care recipients, and self-assessments on depression, burden of care, sleep quality and sleep hygiene — behaviors that may interfere with sleep, such as daytime naps, exercise and watching television before bed.

The researchers found nearly 92 percent of participants experienced poor sleep quality, awoke frequently and slept less than six hours per night — below the recommended total of seven or eight hours per night.

Poor sleep hygiene was found to increase sleep latency, or the amount of time it takes to fall asleep. Although caregivers self-reported taking an average of 30 minutes to fall asleep, data collected from the actigraphy watches showed a longer sleep latency of 40 minutes.

The results, Chang says, highlight the gap between caregivers’ subjective perception and objective measurements of their sleep quality.

“Understanding how well caregivers are sleeping and the variables that affect them is an important first step toward the development of tailored and effective treatment,” she says. “This would help the millions of caregivers receive the optimum sleep needed to protect their health and continue to provide quality care.”

Additional investigators include Rebecca Lorenz, associate professor in the School of Nursing, and Hsi‐Ling Peng, assistant professor in the Department of Nursing at Cardinal Tien College of Healthcare and Management in Taiwan.