Caregivers of people with dementia lose between 2.5 to 3.5 hours of sleep weekly due to difficulty falling asleep and staying asleep – a negative for themselves and potentially for those who receive their care, Baylor University researchers say.
But the good news is that simple, low-cost interventions can improve caregivers‘ sleep and functioning.
The researchers’ analysis of 35 studies with data from 3,268 caregivers – “Sleep Duration and Sleep Quality in Caregivers of Patients with Dementia” – is published in JAMA Network Open.
Informal caregiving for a person with dementia is akin to adding a part-time but unpaid job to one’s life, with family members averaging 21.9 hours of caregiving, according to The Alzheimer’s Association estimates.
“Losing 3.5 hours of sleep per week does not seem much, but caregivers often experience accumulation of sleep loss over years,” said lead author Chenlu Gao, a doctoral candidate of psychology and neuroscience in Baylor’s College of Arts & Sciences. “Losing 3.5 hours of sleep weekly on top of all the stress, grief and sadness can have a really strong impact on caregivers’ cognition and mental and physical health.
But improving caregivers’ sleep quality through low-cost behavioral interventions can significantly improve their functions and quality of life.”
Chronic stress is associated with short sleep and poor-quality sleep. Nighttime awakenings by a patient with dementia also can contribute to disturbed sleep in caregivers, researchers said.
“With that extra bit of sleep loss every night, maybe a caregiver now forgets some medication doses or reacts more emotionally than he or she otherwise would,” said co-author Michael Scullin, Ph.D., director of Baylor’s Sleep Neuroscience and Cognition Laboratory and assistant professor of psychology and neuroscience at Baylor.
“Caregivers are some of the most inspiring and hardest-working people in the world, but sleep loss eventually accumulates to a level that diminishes one’s vigilance and multi-tasking.”
Notably better sleep was observed in caregivers after such simple behaviors as getting more morning sunlight, establishing a regular and relaxing bedtime routine and taking part in moderate physical exercise.
In the United States, 16 million family caregivers give long-term care for dementia patients.
Dementia affects some 50 million adults globally and is expected to increase to 131 million by 2050, according to the World Alzheimer Report.
The global annual cost is nearing $1 trillion, largely due to patients’ loss of independence because of problems with eating, bathing and grooming, incontinence and memory loss.
For the analysis, researchers searched articles in peer-reviewed journals and books addressing caregivers, sleep, dementia and Alzheimer’s disease, published through June 2018. Those studies measured sleep quality and quantity by monitoring brain electrical activity, body movements and self-reporting by caregivers.
The difference in time and quality of sleep was significant when compared to non-caregivers in the same age range and with the recommended minimum of sleep: seven hours nightly for adults. Researchers also analyzed intervention-related changes in sleep quality, such as daytime exercise, not drinking coffee or tea past late afternoon, not drinking alcohol at night and getting more sunlight in the morning.
Researchers noted that four theories about sleep in dementia caregivers have emerged in studies:
- The controversial “sleep need” view that older adults need less sleep than younger ones. If so, caregivers should report less sleep time but without changes in perceived sleep quality.
- The “empowerment view,” which argues that caregiving is a positive, enriching experience, and so sleep quality should be unchanged or even improved.
- The “environmental stressor view,” which holds that the caregiving is so stressful and unpredictable that caregivers would be unable to change their routine in such a way to benefit their sleep.
- The “coping” view that health problems may be driven by unhealthy responses to stress, such as increased alcohol use and less exercise, while interventions should be associated with better sleep.
Baylor researchers’ analysis found that caregivers slept less and perceived their sleep quality to be worsening.
That means that they were not simply adapting—or not “needing” – sleep. Importantly, caregivers could improve their sleep through behavioral changes, as expected by the “coping” view of caregiving.
“Given the long-term, potentially cumulative health consequences of poor-quality sleep, as well as the rising need for dementia caregivers worldwide, clinicians should consider sleep interventions not only for the patient but also for the spouse, child or friend who will be providing care,” Gao said.
Sleep disturbances are common among caregivers of persons with dementia. Cross-sectional studies over the past 15 years indicate that approximately two-thirds of dementia caregivers report they are having trouble sleeping. [1]
But what about the other third? How do caregivers with and without sleep complaints differ from one another? How does their sleep quality change over time?
What increases or decreases a caregiver’s risk for developing sleep problems
Finally, how might this information guide the development of evidence-based treatments to improve caregiver sleep?
We know that sleep disturbances in caregivers can originate from a complex set of precipitating, predisposing, and perpetuating factors, including non-conducive sleep environments, poor sleep habits, cognitive hyper-arousal and rumination, care-recipient nocturnal behaviors, age-related primary sleep disorders, and other co-morbid medical or psychiatric conditions.[1]
We also know that caregiver sleep, like that of other older adults, has considerable night-to-night variability,[2,3] and that caregiver reports of their own or their care-recipient’s sleep quality are not always congruent with what would be expected based upon objective measures of nighttime sleep or activity.[4,5]
Given the complexity of the phenomenon, caregiver insomnia research is challenging, but the personal and socioeconomic stakes are high: poor caregiver sleep has been linked to lowered immune function, elevated stress hormones, increased risk for cardiovascular disease, and risk for premature mortality.[6–9] Continuing studies into the development, maintenance, and treatment of caregiver sleep disturbances are needed.
In this paper, we will review some of the literature describing the association between caregiver sleep problems, and caregiver and care-recipient demographic, health, and psychosocial variables.
We will present data from a longitudinal study that examined factors associated with self-reported sleep problems in dementia caregivers and care-recipients over a 5-year follow-up period. Finally, we will consider the caregiver sleep treatment outcome literature in light of results from these cross-sectional and longitudinal studies, and make suggestions for future research directions.
Cross-sectional correlates of caregiver sleep disturbances
A majority of caregivers of persons with dementia in the United States are older women.[10] Both increasing age and female gender are associated with a higher prevalence of sleep complaints in community-based samples.[11,12]
Older caregivers are also more likely to have a variety of comorbid medical problems which, combined with the medications used to treat these problems, increase risk for development of insomnia.[13–15]
Finally, primary sleep disorders such obstructive sleep apnea (OSA) and restless legs syndrome (RLS), are more common in older adults but frequently undiagnosed,[16–18] and so may play an unrecognized role in many caregiver sleep complaints.
In addition to these predisposing and precipitating demographic and medical risk factors for insomnia, a growing body of literature suggests that the unique psychosocial circumstances faced by caregivers, and their emotional and behavioral responses to these circumstances, may perpetuate caregiver sleep complaints.
Caregivers are often awakened by their care-recipients at night,[19] and caregivers sleep better when they avail themselves of respite breaks away from the care-recipient.[20]
However, several studies have shown that care-recipient nocturnal behavioral disturbances are not, in themselves, necessarily associated with poor caregiver sleep,[2,21] and in fact, caregiver sleep problems often continue even after care-recipients are moved out of the home or die. [22]
There is also evidence that caregiver objective sleep quality is not significantly different from age-matched non-caregiver samples, although caregivers perceive their sleep to be worse.[23]
Thus, what may be more important than the actual caregiving role in the development and maintenance of insomnia is caregivers’ personal interpretation or appraisal of their situation.
In recent years, a number of researchers have begun to consider how modern theories of stress and coping can inform our understanding of the relationship between caregiving and caregiver health outcomes, including those important to sleep.[24]
Using structural equation modeling, Brummett et al.[25] demonstrated that being a caregiver is related to worse sleep quality, but that this association is mediated by caregiver negative affect, which is also inversely related to perceived social support.
In other words, caregivers with good social support and low levels of negative affect may be less likely to develop sleep disturbances.
In the Brummett et al. study, negative affect was measured based on self-reported depression, anxiety, and stress.
Depression and anxiety are both well-known risk factors for insomnia,[26,27] and their prevalence in caregivers is significantly increased compared to non-caregiving adults.[28–31]
In caregivers, negative affect would also commonly include nocturnal worry or rumination, grief and bereavement, caregiver vigilance or hyperalertness, and physiological arousal, all of which have also been found to relate to sleep disturbances in older adults.[7,32–34]
The interaction between caregiver sleep disturbances and negative affect potentially flows both ways, creating a negative feedback loop that can be difficult to break.
Sleep fragmentation and obstructive sleep apnea in particular cause elevations in stress hormones that further exacerbate risk for development of negative health outcomes, affect, and insomnia.[35]
However, it is possible that intervention strategies that target caregiver cognitions might help interrupt this cycle. Two recent studies show that caregivers with higher self-ratings of personal mastery have lower norepinephrine reactivity and PBMC beta(2)-adrenergic receptor sensitivity in response to stress than caregivers with lower mastery scores.[36,37] Although these studies did not directly measure ratings of caregiver sleep, they do provide further evidence that positive caregiver self-appraisals may reduce the likelihood of developing stress-related physiological responses that can worsen physical health, negatively impact mood and burden, and both directly and indirectly contribute to poor nightly sleep.
Journal information:JAMA Network Open
