In the United States, 70% of persons living with dementia (PLWD) live in the community (Hebert et al., 2013; Alzheimer’s Association, 2019) and rely on family and unpaid caregivers (familycaregivers) to avoid or delay nursing home placement (Kasper et al., 2015; Black et al., 2019). About 16.3 million caregivers, provide 18.6 billion unpaid hours of dementia caregiving (Gehrman et al., 2018). These caregivers provide the majority of long-term care and support the complex care need of PLWD aging in their own homes (Freedman and Spillman, 2014; Roth et al., 2015; Wolff et al., 2016). Family caregivers assist with personal care, and health related care needs, in addition to providing social support (Wolff et al., 2016; Burgdorf et al., 2020). Caregiving to PLWD is particularly demanding associated with high caregiver burden (Brodaty et al., 2014) and can place a toll on caregivers’ own mental and physical health (Schulz and Martire, 2004; Brodaty et al., 2014; Roth et al., 2018). Increase in the frequency of behavioral and psychiatric symptoms problems (e.g., agitation, restlessness, wandering) in PLWD or the provision of ongoing assistance with health care needs increase caregiver strain (Jennings et al., 2015; Vick et al., 2019). These caregiving demands are complex and are known to impact the sleep quality of caregivers negatively (Leggett et al., 2018; Liang et al., 2020).

Caregivers for PLWD also report a range of sleep problems in their care recipients, including difficulty falling asleep and nighttime awakenings (McCurry et al., 1999; Tractenberg et al., 2005; Rose et al., 2011). Sleep disturbances in the PLWD that they care for can result in the caregivers themselves experiencing symptoms of sleep disturbance (Ornstein and Gaugler, 2012; Gehrman et al., 2018; Liang et al., 2020). A recent systematic review and meta -analysis of 35 studies found that caregivers for PLWD report shorter and poorer sleep quality compared to non-caregiving adults (Gao et al., 2019). Previous investigators indicate that sleep disturbances among caregivers to PLWD also negatively impacts caregivers, and affect health (Mills et al., 2009) and quality of life (QOL) (Liang et al., 2020; Mather et al., 2020). Indeed, sleep problems are among the most challenging concerns reported by caregivers of PLWD, and are related to increased caregiver burden and likelihood of nursing home placement of the care recipient (Donaldson et al., 1998).

Available data suggest that disparities in the caregiving burden of PLWD exist. Blacks and Hispanics have a higher prevalence of disability in later life, suggesting the possibility of a disproportionate burden on caregivers of PLWD (Skolarus et al., 2017; Cook and Cohen, 2018). Prior work also points to disparities in sleep problems, with Black and Hispanic individuals experiencing more sleep disturbance than non-Hispanic whites (Ownby et al., 2010; Williams et al., 2016). These disparities may contribute to greater burdens for family and unpaid caregivers of PLWD in minority communities. Indeed, prior studies have found that relative to white caregivers, Black and Hispanic caregivers report heavier caregiving demands and assist older adults with greater functional impairment (Cook and Cohen, 2018; Badana et al., 2019; Reinhard et al., 2019; Fabius et al., 2020).

Given the possible disproportionate burden in Black and Hispanic populations, we used linked, nationally representative surveys of Medicare beneficiaries and their family caregivers to explore racial/ethnic differences in sleep and strain among caregivers to PLWD. Findings are relevant to ongoing efforts by researchers and clinicians to improve the health of family caregivers to PLWD.

This study investigated predictors of sleep disturbance and caregiver burden among family caregivers of PLWD, using data from a nationally representative sample of Medicare beneficiaries. Our analysis yielded two key findings. First, compared to non-Hispanic Whites, non-Hispanic Black and Hispanic caregivers had reduced odds of reporting greater trouble falling back asleep. Second, the odds of reporting greater trouble falling back asleep was significantly higher among caregivers with high blood pressure vs. caregivers without high blood pressure. Third, we found no racial/ethnic differences in interrupted sleep or caregiver strain. Our findings extend the caregiver literature by specifically identifying high blood pressure as a significant correlate of inadequate sleep (trouble falling back asleep) among family caregivers of PLWD using nationally representative data. Inadequate sleep is a modifiable lifestyle component essential to ameliorate cardiometabolic risk factors, including blood pressure (St-Onge et al., 2016). Our results add to the accumulating evidence suggesting that caregivers of PLWD commonly experience sleep problems, which are often linked to the caregiver’s own health and risk for subsequent adverse health outcomes (Adelman et al., 2014; Leggett et al., 2018).

The findings of a strong association between greater trouble falling back asleep and high blood pressure are noteworthy given the high prevalence of vascular contributors (e.g., hypertension) to risk of dementia. The direction of the relationship, whether high blood pressure predicts trouble falling back asleep or trouble falling back asleep predicts high blood pressure, was unable to be examined because the current analysis was cross-sectional. Yet, prior research strongly suggest that mid-life high blood pressure increases the risk of late-life cognitive impairment (Elias et al., 2012). Sleep fragmentation or arousal from sleep is known to increase systemic blood pressure (Morrell et al., 2000), which is worse for Blacks (Williams et al., 2016; Yano et al., 2020).

Interestingly, we observed no significant racial/ethnic differences in trouble falling back asleep sleep or caregiver strain. Our findings of greater association of self-reported sleep disturbances (trouble falling back asleep) among white caregivers compared to Black caregivers is inconsistent with most published longitudinal and cross-sectional studies that have shown that individuals of the Black race are characterized by a greater prevalence of inadequate sleep (Stamatakis et al., 2007; Jean-Louis et al., 2015; Williams et al., 2016). There are several plausible explanations for the association we observed. Other studies have found that, compared to white women, minoritized women, despite reporting less adequate sleep, are less likely to report trouble sleeping, providing evidence of an important health disparity (Amyx et al., 2017). For example, caregiver stress or role overload may drive the association between trouble falling back asleep and high blood pressure (Adelman et al., 2014; Liang et al., 2020). Furthermore, it is possible that different racial/ethnic factors may affect minority caregivers’ self-perceived level of the burden of their caregiving role. For example, prior research has shown that Black caregivers are more likely to report emotional gains and less likely to report emotional difficulty than whites (Beach et al., 2019; Fabius et al., 2020; Liu et al., 2020). For example multiple studies have found that United States-born Hispanic/Latina, Chinese, and Japanese immigrants were more likely to report sleep complaints than their first-generation ethnic counterparts, a finding largely explained by language acculturation and unmeasured factors associated with language acculturation (Hale et al., 2014; Jackson et al., 2014; Cunningham et al., 2016).

Beyond our findings about racial difference among caregivers of PLWD, other results merit further clarification. Our finding that female caregivers were more likely to report experiencing high caregiver strain and trouble falling back asleep compared to male caregivers is consistent with prior studies (Vick et al., 2019) and reflects the predominance of women as dementia caregivers (Riffin et al., 2017; Vick et al., 2019). Similarly, our finding that higher caregiving intensity (daily hours spent caregiving, help with personal care and mobility every day or most days) was associated with greater odds of interrupted sleep and trouble falling back asleep was unsurprising and in line with prior literature (Polenick et al., 2017; Leggett et al., 2018), and include an association with daily assistance with personal care and mobility.

Given the growing population of PLWD living in the community, with heavy reliance on family caregivers, our study has important implications. The health consequences associated with poor sleep for caregivers of PLWD underscore the need for structured support systems for this population. Strategies such as standardized caregiver assessment tools for determination of caregiver ability and risk factors for conditions such as high blood pressure, are warranted to support the caregiver’s health, and ultimately improve outcomes of the PLWD (Riffin et al., 2021). This could help identify caregivers in whom interventions aimed at reducing sleep disturbances should be targeted.

Strengths of this study include a nationally representative sample of United States caregivers to PLWD, and the investigation of racial differences associated with caregiver sleep and strain, given the project increase in the minority PLWD. However, this study has limitations. First, sleep disturbances were measured by self-report, rather than objective measurement of sleep captured by polysomnography or actigraphy. Research using validated measures of sleep such as the Pittsburgh Sleep Quality Index (Buysse et al., 1989) are needed to corroborate findings based on subjective data. Additionally, the cross-sectional observational study design precludes making causal inferences between sleep measures and high blood pressure. Future longitudinal studies that include validated measures of sleep quality (Buysse et al., 1989) are warranted to examine these associations that may suggest causal links.

In summary, the present research adds to current literature by identifying predictors of sleep disturbance and strain among family caregivers who actively support PLWD in the community. Our study findings suggest there is a cross-sectional association between greater trouble falling back asleep and high blood pressure. Further study is warranted to examine if this relationship persists longitudinally and to examine the direction of the association. Our findings suggest that caregivers to PLWD may be at risk for poor health and caregiving outcomes from care-related sleep disturbances. Clearly, there is a need for effective interventions aimed at caregivers of PLWD, a population already susceptible to poor health outcomes.

The data analyzed in this study is subject to the following licenses/restrictions: NHATS NSOC Sensitive Data. Requests to access these datasets should be directed to https://nhats.org/sites/default/files/inline-files/Obtaining_NHATS_Sensitive_Data_Files_v13_0.pdf.

The studies involving human participants were reviewed and approved by Adelphi University Institutional Review Board. The patients/participants provided their written informed consent to participate in this study. The NHATS research team conducted the interviews and obtained written informed consent.

ZO and GJ-L: conceptualization. ZO, RSF-C, and GJ-L: methodology. RSF-C: formal analysis and data curation. ZO, CS, and RSF-C: writing—original draft preparation. ZO, RSF-C, CS, OB, CO, AT, ST, and GJ-L: writing—review and editing. All authors have read and agreed to the published version of the manuscript.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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