Sleep on It
Poor Sleep is Not Inevitable for Dementia Care Partners.
Poor sleep is a common challenge for many, but it is particularly prevalent among those who provide unpaid care for individuals with dementia.
An alarming 67% of informal dementia care partners report struggling with sleep disturbances – a stark contrast to the 50% seen in the general population.
A 2019 review and meta-analysis of 35 studies involving more than 3,200 dementia care partners – by Dr. Chenlu Gao and colleagues – found that both sleep quantity and sleep quality were significantly worse among the care partners compared to the non-caregiving controls. Care partners slept 2.42 to 3.5 hours less per week, because of troubles falling asleep and staying asleep. These findings were published in JAMA Network Open.
WHY DO DEMENTIA CARE PARTNERS STRUGGLE WITH SLEEP?
Dementia care partners face sleep challenges partly due to the same factors that disrupt sleep for half of the general population. Sleep challenges become more common with increasing age whether you’re a care partner or not because of changing hormones, less physical activity, pain, increased awakenings to go to the washroom, grief, illness, etc.
But dementia care partners experience unique, additional contributors to poor sleep.
01 THE DIRECT IMPACT OF DEMENTIA PATIENTS’ SLEEP PATTERNS.
Care partners’ sleep is often disrupted by the nighttime behaviours of the people with dementia they care for, e.g., irregular sleep timing, insomnia, nighttime awakenings (sometimes involving agitation or wandering), and nightmares. Care partners may find themselves feeling hyper-vigilant and sleeping lightly in anticipation of the potential needs of the person with dementia throughout the night.
02 THE BROADER IMPACT OF CHRONIC STRESS ON SLEEP.
Dementia caregiving is a demanding, time-consuming responsibility. It is like working an almost full-time job, with family members and other unpaid care partners estimated to spend an average of nearly 31 hours each week caring for someone with dementia, according to the Alzheimer’s Association. All of this emotionally- and cognitively-demanding responsibility means that many dementia care partners experience chronic stress, which can negatively impact sleep.
03 THE MENTAL HEALTH TOLL OF DEMENTIA CAREGIVING & ITS IMPACT ON SLEEP.
Dementia caregiving can negatively affect care partners’ mental health – for example, contributing to feelings of distress, hopelessness, and frustration, along with symptoms of depression – which can in turn negatively affect care partner sleep. The relationship between mood disorders (like depression) and sleep disturbances are bidirectional, e.g., depression contributes to poor sleep, but then that poor sleep contributes to symptoms of depression, creating a cyclical challenge.
IMPACTS OF POOR CARE PARTNER SLEEP
Sufficient, good-quality sleep is critical for health, well-being, and quality of life. It’s so important that Women’s Brain Health Initiative has included sleep as one of the Six Pillars of Brain Health.
Poor sleep has been linked with negative impacts on mental health (e.g., negative mindset, depression, anxiety), as well as on cognitive performance (e.g., sleep quality can influence memory, learning, decision-making, and judgement).
Poor sleep has also been associated with many negative physical effects. For example, poor sleep among dementia care partners has been linked with increased inflammation, which is known to increase the risk of cardiovascular and other chronic diseases, as well as mortality.
“Chronic poor sleep over months and years has been linked with some concerning negative impacts specifically on the brain, including quicker cortical thinning and lower clearance of amyloid-beta and tau, which are hallmarks of Alzheimer’s disease,” explained Dr. Gao, lead author of the JAMA Network Open research paper mentioned previously and a research fellow at Massachusetts General Hospital in Boston.
As a result, poor sleep among caregivers may be linked with increased risk for them to develop Alzheimer’s disease or another type of dementia.
WHAT’S A DEMENTIA CARE PARTNER TO DO?
Sleep is absolutely essential. But given all the unique challenges dementia care partners face that can contribute to poor sleep, is poor sleep inevitable for them? No, it’s not. Dr. Gao’s 2019 research found that “sleep problems in caregivers are not immutable.”
“Our meta-analysis showed that dementia caregivers who participated in a sleep intervention experienced better sleep post-intervention, compared to dementia caregivers in a control group,” explained Dr. Michael Scullin, corresponding author of the research paper and an associate professor at Baylor University in Waco, Texas.
In particular, we found that post-intervention sleep quality was better after behavioural interventions such as sleep hygiene education, stimulus control, and light chronotherapy.
Research is underway into an innovative behavioural sleep intervention program that targets both people with Alzheimer’s disease (AD) and their care partners, Care2Sleep.
Care2Sleep originated from the Nighttime Insomnia Treatment and Education in Alzheimer’s Disease (NITE-AD) program, which was designed specifically to address the needs of individuals with dementia.
NITE-AD involves working with care partners to improve the sleep of the person with dementia through a combination of strategies, including:
personalized sleep hygiene education (e.g., consistent bedtime and rising time, reducing daytime napping, avoiding caffeine and alcohol in the evening);
training in how to address behavioural and psychological symptoms of dementia, especially nighttime wandering;
daily walking; and
increased light exposure.
The NITE-AD program was chosen as the starting point for Care2Sleep because it had been found to significantly improve sleep and reduce depression in the participants with AD.
The Care2Sleep program is a dyadic sleep intervention, i.e., one that works with pairs of care partners and people with AD. The intervention’s content and approach were developed by Dr. Yeonsu Song and colleagues in a small initial study in 2019 with five dyads.
The researchers then conducted a pilot study with a larger group of care partner–patient dyads to evaluate the effectiveness of their newly developed program.
Care2Sleep takes a multi-pronged approach, incorporating key components of Cognitive Behavioural Therapy for Insomnia (such as sleep hygiene, stimulus control, sleep compression, and relaxation techniques), daily walking, and natural light exposure, as well as problem-solving for managing nocturnal dementia-related behaviours
“The program is delivered by trained sleep educators over five weekly one-hour sessions.” continued Dr. Song, an associate professor of nursing at UCLA in Los Angeles.
For the pilot, 30 dyads were randomly assigned to either a five-session Care2Sleep intervention or an information-only control group. In the end, 13 dyads completed all five Care2Sleep sessions and 14 dyads completed the control condition.
“Our pilot study revealed that, compared to the control group, dyads who received the Care2Sleep intervention showed patterns of sleep improvement at the three-month follow-up, although the improvements were not statistically significant, primarily due to the small sample size resulting from the COVID-19 pandemic,” said Dr. Song.
In addition, the caregivers in the Care2Sleep group reported more positive aspects of caregiving immediately post-treatment as well as three months later, compared to the controls.
“Overall, this study demonstrated the feasibility of improving sleep in dementia care dyads with an intervention using behavioural strategies that target both the person with dementia and the caregiver,” continued Dr. Song.
Even though our findings did not reach the threshold of statistical significance, the overall pattern of results suggested some improvements in both sleep and caregiving- related experiences.
Dr. Song added: “Further research is needed with a much larger number of participants to fully evaluate the potential of the Care2Sleep program beyond these initial promising findings.” These results were published in 2024 in Journal of the American Geriatrics Society.
Thanks to a more than US$3.75-million grant from the National Institutes of Health, Dr. Song’s research continues. They are currently two years into the five-year project, A Dyadic Approach to Improve Sleep and Well-Being Among Persons with Alzheimer’s Disease and Their Caregivers. The research is taking place at multiple sites, as well as virtually, in California. They are still seeking participants for this research, so if you’re interested and are a resident of California, visit alzheimers.gov/clinical-trials/sleep-education-people-dementia-and-their-caregivers for more information.
CALL TO ACTION FOR CARE PARTNERS
“Research clearly shows that sleep is critical for health, and caregivers are no exception,” said Dr. Song.
SINCE SLEEP DEBT ACCUMULATES OVER TIME WITH COMPOUNDING NEGATIVE EFFECTS, IT’S IMPORTANT FOR CAREGIVERS TO ADDRESS ANY SLEEP CHALLENGES AS SOON AS POSSIBLE.
“That might mean sitting outside in sunny weather or going out for daily walks (with or without the person with dementia). It might mean establishing a regular sleep schedule with good sleep hygiene on their own. Or, it might mean working with a healthcare professional to help them and their loved one with dementia to sleep better,” continued Dr. Song.
“It may not be easy, but caregivers must make self-care – including good sleep – a priority, for the sake of their own health.”
Source: Mind Over Matter V20