CLINICAL REVIEWSleep disturbances in caregivers of persons with dementia: Contributing factors and treatment implications
Introduction
The National Alliance for Caregivers estimates that there are 44.4 million caregivers age 18 and older in the United States (US), representing 21% of all US households.1 The vast majority of these caregivers are women, who are either living with the care-recipient or visiting them at least weekly, and who receive no paid and very little unpaid assistance with their family member's care. In a 2003 national survey, 23% of caregivers reported that they were caring for someone with Alzheimer's disease, dementia, or other mental confusion.1
Sleep disturbances are common among dementia caregivers. Studies over the past 15 years have reported that approximately two-thirds of older adult caregivers have some form of sleep disturbance.2, 3, 4 Caregiver sleep problems are often presumed to be linked to nighttime behaviors in the care-recipient. Obviously, if a person with dementia is awake and roaming around the house at night, this behavior impacts the caregiver's sleep as well. In fact, research shows that care-recipient sleep disturbances are one of the most common reasons cited for moving a family member with dementia into an institutional setting.5
However, not all caregivers develop sleep problems, and when they do occur they are not necessarily simply explained or categorized. One study found that family caregivers of demented and non-demented older adults had similar 24-h rest–activity patterns.6 Another showed that although spousal caregivers complained more about their sleep, it was not objectively worse (as measured by polysomnography) than non-caregiver controls.7 Similarly, caregiver proxy reports of sleep disturbances in demented care-recipients have been found to have only modest correlations with actigraphic measures of care-recipients’ sleep.8, 9 These findings, combined with the observation that rates of self-reported sleep disturbances in caregivers are generally much higher than those reported for persons with dementia (Table 1), suggest that factors other than nocturnal awakenings in the dementia sufferer contribute to caregivers’ sleep complaints.
In this paper, we examine several possible causes for the development and maintenance of sleep disturbances in dementia caregivers, specifically, the impact of irregular caregiver sleep/wake routines, depression and burden, and caregiver medical morbidity. We consider the implications of these contributing factors for health care providers who are treating caregivers of family members with dementia, and present a vignette that helps illustrate the interplay in a typical clinical setting. Finally, we provide a frame of reference for subsequent recommendations for clinicians and researchers investigating the development, maintenance and treatment of sleep problems in family caregivers.
Section snippets
Sleep and disrupted routines
According to the “3P model” developed by Spielman, the development of sleep disturbances is a multi-faceted event that arises from a combination of predisposing, precipitating, and perpetuating factors.10 For caregivers of persons with dementia, these factors can be independent of the caregiving situation, as well as directly related to the influence of the care-recipient. Predisposing, independent risk factors for changes in the sleep of the typical caregiver include increasing age and female
Sleep and caregiver burden
A second major contributor to the development and maintenance of sleep problems in dementia caregivers is caregiver burden. Caregiver burden has been defined as, “the physical, psychological or emotional, social, and financial problems that can be experienced by family members caring for impaired older adults.”23 “Objective burden”24 includes primary stressors produced by the care-recipient, such as nighttime wandering, physical agitation, and incontinence. “Subjective burden” includes
Sleep and declining health
The third factor that contributes to sleep disturbances in caregivers of persons with dementia is declining health. Medical co-morbidity is a known risk factor for insomnia.70 By virtue of their age, older caregivers are at risk for developing many of the chronic illnesses that can directly impact sleep.71 Primary sleep disorders, including sleep-disordered breathing (SDB) and obstructive sleep apnea (OSA), periodic leg movements in sleep (PLMS), and restless legs syndrome (RLS), are more
A real-world example
We opened this paper by pointing out that sleep disturbances in dementia caregivers are complex, and typically involve an interaction between the effects of disrupted sleep/wake routines, caregiver burden and depression, and medical morbidity. Appreciating this complexity and evaluating which factors are important in any given specific situation is essential for developing a good treatment plan. The following vignette will demonstrate this interplay and will help us consider the implications
Conclusion
In summary, sleep disturbances in caregivers of persons with dementia are common. Estimates suggest that there are more than 10 million adult caregivers of persons with dementia, two-thirds of whom experience some form of sleep disturbances during the course of their caregiving career. A complex set of precipitating, predisposing, and perpetuating factors, including the presence of caregiver disrupted sleep routines, caregiver burden and depression, and poor physical health are frequently
Acknowledgments
This study was supported by Grants MH072736, MH01644, AG02515, and AT002108. Portions of this paper were presented at the International Longevity Center Sleep and Healthy Aging Scientific Consensus Conference, November 2–4, 2005, New York, NY.
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