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. Author manuscript; available in PMC: 2026 Oct 7.
Published in final edited form as: Res Gerontol Nurs. 2025 Sep 23;18(6):293–301. doi: 10.3928/19404921-20250915-02

Barriers to and Facilitators of Sleep Health in Family Caregivers of Persons Living With Dementia

A Qualitative Study

Jiwon Lee 1, Alexus Copes 1, Elliane Irani 1, Regena Spratling 1, Glenna S Brewster 1
PMCID: PMC13640446  NIHMSID: NIHMS2211152  PMID: 40986561

Abstract

PURPOSE:

Sleep disturbances are common among family caregivers of persons living with dementia (PLWD), yet few interventions are designed to address these sleep challenges. Existing sleep interventions often overlook the specific barriers and facilitators that shape caregivers’ sleep experiences. A clearer understanding of these factors is essential for developing tailored, acceptable, and effective interventions to support caregiver sleep health.

METHOD:

The current secondary data analysis used a qualitative descriptive design. Nineteen family caregivers of PLWD who provided unpaid care for >4 hours per day and had insomnia symptoms (Insomnia Severity Index score >5) participated in the current study. Semi-structured interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis.

RESULTS:

Caregivers, on average, were aged 63 years (SD = 8.2 years), and primarily female (57.9%), White (68.4%), and spouses (78.9%). Themes for barriers to good sleep were: (1) Connectedness of the PLWD Behavior With Caregiver Sleep, (2) Caregiver Responsibilities and Worries, and (3) Pre-Existing Sleep Problems and Age-Related Health Conditions. Themes for facilitators of good sleep were: (1) Physical Activity and Mindfulness Practices, (2) Using Sleep Hygiene Strategies, and (3) Preferring Nonpharmacological Sleep Solutions Despite Medication Benefits.

CONCLUSION:

The current study identified several modifiable barriers and facilitators that can inform future interventions. These findings underscore the need for early, proactive interventions that incorporate nonpharmacological strategies and consider the interconnected nature of sleep within the caregiving relationship.

Sleep disturbances are a major concern among caregivers of people living with dementia (PLWD), affecting up to 92%—a significantly higher rate than that observed in the general population (Beaudreau et al., 2008; Brewster, Higgins, et al., 2023; Castro et al., 2009; Fonareva et al., 2011). Although some caregivers may experience sleep difficulties even prior to assuming their caregiving roles, these disturbances—often resembling insomnia symptoms, such as prolonged sleep latency and increased wake After sleep onset—are frequently exacerbated by caregiving demands (Brewster et al., 2022; Brewster, Higgins, et al., 2023; Brewster, Pierpaoli Parker, et al., 2023; Brewster et al., 2024; Fonareva et al., 2011; Gallagher et al., 2024; Peng et al., 2019). In addition to insomnia-like symptoms, caregivers often report frequent nighttime awakenings, reduced total sleep duration, low sleep efficiency, and non-restorative sleep (Brewster, Higgins, et al., 2023; Brewster et al., 2024; Fonareva et al., 2011; Rowe et al., 2008). These cumulative challenges contribute to poor overall sleep quality among caregivers (Brewster et al., 2024; Fonareva & Oken, 2014; Gao et al., 2019; Peng et al., 2019). Given the high prevalence of sleep disturbances in this population, a better understanding of contributing factors is essential to inform the development of tailored interventions.

Caregiver sleep is shaped by a complex interplay of factors related to the caregiver and PLWD. For example, caregivers who experience symptoms of depression and anxiety and have limited social support are more likely to report greater sleep disturbances (Brewster et al., 2024; Mao et al., 2025; Osakwe et al., 2022). In addition, physical health challenges, such as chronic illnesses, limited engagement in self-care, and inadequate sleep hygiene practices, are also associated with poorer sleep outcomes (Brewster et al., 2024; Mao et al., 2025). These associations may be further influenced by sociodemographic and cultural factors, including age, gender, ethnicity, and caregiving expectations (Brewster et al., 2024; Peng et al., 2019). Moreover, care-related responsibilities—such as managing behavioral and psychological symptoms of dementia, performing nursing tasks, and providing nighttime supervision—can significantly disrupt caregivers’ sleep (Brewster, Higgins, et al., 2023; Brewster et al., 2024; Mao et al., 2025). These disruptions are often compounded by the unpredictability of the PLWD’s sleep-wake patterns, which interfere with caregivers’ ability to achieve uninterrupted and restorative sleep (Brewster et al., 2024; Gehrman et al., 2018). Although these studies highlight important contributing factors, less is known about how caregivers themselves perceive and navigate these challenges—underscoring the need to qualitatively explore their perspectives on barriers to and facilitators of sleep.

Sleep disturbances not only reduce caregivers’ quality of life but can also increase their risk for a range of chronic health conditions, including type 2 diabetes, obesity, hypertension, heart disease, and depression (Antza et al., 2021; Calhoun & Harding, 2010; Covassin & Singh, 2016; Murphy & Peterson, 2015; National Center for Chronic Disease Prevention and Health Promotion, 2022). Furthermore, emerging evidence suggests that poor sleep may elevate the risk of developing dementia (Shi et al., 2018). These findings underscore the importance of developing interventions to support caregiver sleep health that are guided by caregivers’ perspectives and grounded in their lived experiences—not only to reduce their risk of adverse health outcomes, but also to enable them to continue providing care to PLWD.

Given that >11 million informal caregivers currently provide care for PLWD (Alzheimer’s Association, 2024), it is striking how few interventions specifically target caregiver sleep (Gao et al., 2019; Pignatiello et al., 2022). Existing interventions are categorized into physical, environmental, cognitive, and collaborative approaches, but their effectiveness remains mixed (Pignatiello et al., 2022), further limiting viable options for caregivers. Recognizing the barriers to and facilitators of restful sleep is a necessary first step in designing effective, tailored interventions that are aligned with caregivers’ needs, roles, and daily realities. Ultimately, this approach may improve the effectiveness, acceptability, and scalability of caregiver-focused sleep interventions. Therefore, the purpose of the current study was to explore the barriers to and facilitators of good sleep among caregivers of PLWD from caregivers’ perspectives.

METHOD

Design, Sample, and Setting

This qualitative descriptive study used a convenience sample of 19 family caregivers of PLWD drawn from a larger three-arm randomized controlled trial, Tele-Savvy (NCT03033875). The parent study evaluated the effectiveness of an online psychoeducational intervention in improving caregiver outcomes, including depression, perceived stress, and sense of mastery (Hepburn et al., 2021). Caregivers were randomized to one of three groups: (1) Tele-Savvy (active intervention), (2) Healthy Living (attention control), or (3) Usual Care (waitlist control). Tele-Savvy comprised seven weekly 75- to 90-minute videoconference sessions and daily email-delivered video lessons focused on dementia education, caregiver coping strategies, and self-care. The Healthy Living group received content of similar structure and duration but focused on general wellness topics, such as nutrition and physical activity. Caregivers in the Usual Care group did not receive any structured content during the study period (Hepburn et al., 2021). No intervention included sleep hygiene education or sleep-specific strategies for caregivers or PLWD.

Eligibility criteria for the parent study included being an informal (unpaid) caregiver of a community-dwelling PLWD, providing at least 4 hours of care per day, having no plans to transition the care recipient to residential care within the next 6 months, and having access to a computer or internet-enabled device (Hepburn et al., 2021). Average age of Tele-Savvy caregivers was 64.6 years (SD = 11.2 years). The majority were female, White, spouses of the PLWD, not employed, and resided in suburban areas (Hepburn et al., 2021). Most caregivers lived with the PLWD, and caregiving duration ranged from 0 to 13 years, with a median of 2 years (Brewster, Higgins, et al., 2023).

Qualitative interviews were conducted approximately 6 months After the intervention. Caregivers who completed the 6-month follow-up survey and consented to future contact were eligible for the current study. Initially, there were no insomnia-related inclusion criteria; however, after one participant reported no sleep difficulties, a minimum score of 5 on the Insomnia Severity Index (ISI; Bastien et al., 2001) was applied to ensure inclusion of caregivers with at least some insomnia symptoms. The ISI is a 7-item self-report measure assessing insomnia symptoms over the past 2 weeks. Each item is rated on a 5-point Likert scale, ranging from 0 (no problem/very satisfied/not at all) to 4 (very severe, very dissatisfied/very much) and total scores ranging from 0 to 28. Standard cutoffs classify scores as: 0 to 7 (no clinically significant insomnia), 8 to 14 (subthreshold), 15 to 21 (moderate), and 22 to 28 (severe). Although ISI scores were collected at baseline and interviews occurred several months later, participants’ average score was 11.5 (SD = 6.3), indicating subthreshold insomnia.

The study was approved by the Emory University Institutional Review Board, and all participants provided informed consent prior to data collection.

Data Collection and Management

Participants responded to open-ended, semi-structured questions designed for them to describe their sleep patterns and their barriers to and facilitators of good sleep. All interviews were conducted by the last author (G.S.B.). Interviews ranged from 20 to 45 minutes in length. Upon completion, participants received a $30 gift card to a local store as compensation. Interviews were recorded via a secure videoconferencing platform and transcribed verbatim. Transcripts were cross-checked against the original recordings to ensure accuracy. Pseudonyms were assigned to all participants to protect their identities and maintain confidentiality.

Data Analysis

We conducted a thematic analysis following the six-phase framework outlined by Braun and Clarke (2006), using an inductive coding approach to allow themes to emerge directly from the data rather than being guided by a preexisting theoretical model. Two researchers (J.L., G.S.B.), with expertise in caregiving and/or sleep, independently reviewed and coded the interview transcripts line-by-line. During the initial coding phase, the researchers generated codes that reflected salient features and patterns related to the barriers to and facilitators of sleep. After coding independently, the researchers met to compare, refine, and consolidate codes into broader descriptive categories. These categories were then organized into overarching themes and more specific subthemes through iterative discussion. When discrepancies arose in theme or subtheme definition, a third team member (R.S.), an expert in qualitative methodology, was consulted to help reach consensus and ensure methodological rigor.

To support trustworthiness, one author (G.S.B.)—who conducted all interviews—used probing and clarifying questions and maintained detailed field notes throughout data collection (Morse, 2015). An audit trail was kept to document coding decisions and theme development across all phases of analysis. To promote credibility of the data, participants were chosen who had experience of the phenomena under study.

RESULTS

Most participants were female (57.9%), identified as White (68.4%), and were spouses of the PLWD (78.9%) (Table 1). Average age of caregivers was 63 years (SD = 8.2 years), and they had been providing care for an average of 2.7 years (SD = 2.1 years).

TABLE 1.

Caregivers’ Demographic Characteristics (N = 19)

Variable n (%)
Age (years), mean (SD) (range) 63 (8.23) (46 to 73)
Sex (female) 11 (57.9)
Race
 African American 5 (26.3)
 Asian 1 (5.3)
 White 13 (68.4)
Educational level
 Bachelor’s degree or lower 8 (42.1)
 Higher than Bachelor’s degree 11 (57.9)
Relationship to PLWD
 Spouse 15 (78.9)
 Child 4 (21.1)
Employment status
 Not employed 11 (57.9)
 Employed 8 (42.1)
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Note. PLWD = person living with dementia.

Six themes, some with accompanying subthemes, were identified that captured caregivers’ perceptions of the barriers to and facilitators of achieving good sleep. The themes for the barriers were: (1) Connectedness of PLWD Behavior With Caregiver Sleep, (2) Caregiver Responsibilities and Worries, and (3) Pre-Existing Sleep Issues and Age-Related Health Conditions. The themes for the facilitators were: (1) Physical Activity and Mindfulness Practices, (2) Using Sleep Hygiene Strategies, and (3) Preferring Nonpharmacological Sleep Solutions Despite Medication Benefits.

Barriers to Good Sleep

Theme 1: Connectedness of PLWD Behavior With Caregiver Sleep.

This theme explores the dynamic interplay between the daytime and nighttime behaviors of PLWD and caregivers’ sleep. Caregivers reported that days marked by calm and routine activities tended to result in a better night’s sleep, whereas challenging daytime behaviors, such as repetitiveness or restlessness, contributed to sleep difficulties. For example, Caregiver 9, a wife, mentioned:

It really depends on how he’s doing. You know, if he’s had a really good day and it’s been, you know, smooth sailing all day, it doesn’t affect me at all. But those days that he might be a little bit, um, you know, like repetitive or has trouble…. Those are the nights that I have trouble sleeping.

In addition, another caregiver noted that aspects of the PLWD’s physical health, such as having regular bowel movements during the day, helped alleviate caregiving-related stress, leading to an improved night’s rest for the PLWD and caregiver. Caregiver 6, a husband, noted, “If she has a bowel movement through the day or twice a day, it makes my night better…. I think that took the stress off.”

Caregivers also reported frequently encountering sleep disturbances due to nocturnal behaviors of the PLWD. For example, Caregiver 20 noted difficulty in achieving restful sleep when their loved one experienced insomnia symptoms, stating, “When [my mom] can’t sleep…then it makes it hard for [me] to sleep.” Further, nighttime behaviors, such as wandering or physical gestures, also caused caregivers to wake up, further disrupting their sleep. Similarly, Caregiver 6 reported, “My wife aimlessly walked through the house, just all night. So that, in turn, interrupts my sleep.” Caregiver 11 shared a comparable experience, stating, “…my wife is waking me up. She’ll just sometimes start rubbing my arm…turn the light on, or get up, so it’s one of those things that will wake me up.”

Subtheme 1a: Increased Vigilance. The “increased vigilance” subtheme portrays the heightened state of alertness among caregivers. Many found themselves in a state of constant vigilance during the night, leading to light sleeping and frequent awakenings driven by fears for the safety of the PLWD. Caregiver 8 shared, “I was on alert all the time. Cause I was afraid he was gonna walk out or get confused,” whereas Caregiver 15 stated, “I worry at night because I worry that he’ll get up and urinate or defecate somewhere in the living room or just be confused. I would always peek out and check and make sure he was okay on the couch.”

Theme 2: Caregiver Responsibilities and Worries.

This theme explores how caregivers’ nighttime sleep is profoundly affected by their worries regarding various aspects of caregiving. Caregivers reported frequent sleep disruptions and referred to their sleep disruptions due to worries about managing caregiving responsibilities, financial pressures, and anxiety over the health and disease progression of the person for whom they are caring. For example, Caregiver 5 highlighted the multifaceted stressors, stating, “How are we going to deal with all the caregiving? …Are we gonna have the money for all this?… Concerns about my wife’s health, and you know, if it’s going to deteriorate.” Similarly, Caregiver 16, a husband, noted the direct relationship between their worries and sleep difficulties, noting that “it’s pretty predictable that if I get too worried, then it becomes very difficult to sleep. Um, this disease is a terrible disease. And where it takes us is pretty frightening if I start to think about the [particulars of it].”

Subtheme 2a: Balancing Work, Family, and Caregiving Responsibilities. This subtheme represents the difficulties caregivers of PLWD have balancing work, family duties, and caregiving, which negatively affect their sleep. Caregiver 1 stated:

You know, I have my own personal issues, you know, the things of the day, but then when you add the responsibility and the accountability of my mother, then I have to factor that in, too, and then balance the two with what’s required for her. So that keeps me having difficulty going to sleep.

Similarly, Caregiver 4 emphasized the combined pressures of caregiving, full-time work, and other obligations, stating, “It’s a combination of caregiving, full-time work, and other obligations. Things that are going on at work, stretched in different ways, and my mind is just constantly going, so it is hard to wind down.” Caregiver 12 pointed out that family issues also contribute to their sleep challenges: “Not necessarily providing care, but I have some other situations within my family that extremely impact my ability to sleep well.” Caregiver 20, reflecting on broader environmental factors, mentioned, “I moved into the house with her [mother], which is almost like a childhood house…is old now, needs repairs, so I think all of that plays a factor with my sleep versus just taking care of my mother.” Finally, Caregiver 15, addressing the myriad concerns that occupy their mind, stated, “Oh gosh, everything. Worrying about getting to work on time, if my caregiver’s gonna show up, how my husband is doing in the morning…. Just dozens of thoughts…”

Theme 3: Pre-Existing Sleep Issues and Age-Related Health Conditions.

This theme addresses the influence of pre-existing sleep issues, health problems, and aging on the caregiving role. Some caregivers described experiencing sleep difficulties before they became caregivers. For instance, Caregiver 5 reported having issues with night awakenings that began prior to his caregiving role. Consequently, his sleep had not changed since he started care-giving. He stated, “…the nature of concern has changed, but I am still a very erratic sleeper.” Similarly, Caregiver 15, a wife and caregiver for her husband for the past 7 years, described “my sleep has never been great…over the last 30-some years.”

Caregivers also identified age-related changes as obstacles to achieving restful sleep. They described symptoms of aging as barriers to a good night’s sleep. Caregiver 17, a son, stated, “I am 61…. I wake up to go to the bathroom quite a bit…I guess your prostate gets enlarged, and you have to go to the bathroom more often.” Caregiver 20, a daughter, reported, “…my sleep has really been challenged. Getting older, so I’m going through menopause. It’s just the hot flashes really make it difficult to sleep at night.”

Facilitators of Good Sleep

Theme 1: Physical Activity and Mindfulness Practices.

This theme explores how physical activity and mindfulness practices play important roles in getting good sleep and how they affect caregivers of PLWD’s sleep. Although caregivers of PLWD find it challenging to make time for themselves, some reported trying to stay physically active regularly to improve their sleep. Caregiver 12 stated, “I exercise, that helps…tremendously…. At 73 years old, it’s harder than it used to be, but I do try to stay active.” Caregiver 4 recounted her participation in a 3-week intensive exercise program, stating that rigorous morning exercises seemed to improve her sleep quality, making it deeper and more restful. She mentioned, “I found that, um, doing that activity, that intense workout in the morning, I guess by the time I got home and slept, I felt like I had a deeper, more sound sleep.” However, she noted difficulty fitting exercise into her daily schedule.

In addition to physical activities, caregivers reported that mindfulness practices, including breathing exercises, meditation, and yoga, positively affected their sleep. Caregiver 15 communicated, “I’ve not found anything that’s helpful. The only activity I’ve done to try to help myself sleep is relaxation, like starting with my toes and working my way up my body.” Caregiver 4 also disclosed that practicing morning meditation has helped her achieve more restful sleep: “I have been working on tactics, techniques to do more calming, you know, meditation, calming, sleeping better.”

Theme 2: Using Sleep Hygiene Strategies.

This theme explores how caregivers of PLWD use various sleep hygiene strategies to achieve good sleep and their experiences with them. Caregivers discuss strategies, such as reducing caffeine intake, avoiding watching or having a television in the bedroom, and managing alcohol consumption to improve sleep quality. For instance, Caregiver 11 stated, “There is a TV in the bedroom, but we don’t use it. I don’t think that is the best way to do it; prepare yourself.” Moreover, several caregivers reported avoiding daytime naps to improve nighttime sleep. Some also described occasional or social alcohol use, noting that drinking before bed helped them fall asleep more easily.

Despite understanding the benefits of good sleep hygiene, caregivers admitted facing challenges in maintaining these habits. Caregiver 14, for example, mentioned enjoying reading before bed on an iPad, acknowledging that this habit might not be the best practice for good sleep quality. She stated, “I like to read before I go to sleep, but I read on an iPad. I know that’s not supposed to be so good, but it’s much easier.” Another caregiver attempted to use calming audio tracks from YouTube to relax and prepare for sleep but found them less effective than expected. Caregiver 4 expressed, “…audios that I can find on YouTube that are just to help you get ready to sleep, and you know, just calm your mind, um no….”

Theme 3: Preferring Nonpharmacological Sleep Solutions Despite Medication Benefits.

Caregivers of PLWD in the current study reported they had preferences for nonpharmacological methods to improve sleep, despite having experimented with various sleep-enhancing medications, including melatonin and prescription options, such as Ambien®. Caregivers noted that although these medications were effective in facilitating better sleep, they often experienced drowsiness the following day. Furthermore, some caregivers expressed reluctance to use sleep aids due to concerns about their ability to attend to the needs of the PLWD under their care. Caregiver 6 exemplified this sentiment, stating:

I tried melatonin…and it didn’t seem to work. But I really don’t want to use any kind of sleep aid. Because, number one, I don’t like the way stuff like that makes me feel…when I’m trying to wake up and get up. And then the next thing is, I’m afraid to go to sleep, you know, with some type of medication that may keep me asleep, and then, you know, I can’t respond to what may be going on with [the PLWD].

DISCUSSION

The purpose of the current qualitative study was to identify barriers to and facilitators of good sleep among caregivers of PLWD, with the goal of informing interventions tailored to their sleep needs. Caregivers identified a range of factors—caregiver- and PLWD–related—that contribute to disrupted or improved sleep, spanning behavioral, emotional, and lifestyle domains. These findings highlight the complexity of caregiver sleep and underscore the need for multicomponent interventions to address it effectively.

Although participants’ ISI scores generally fell within the subthreshold range, their responses revealed meaningful and persistent sleep challenges. Subthreshold insomnia symptoms are common among caregivers of PLWD (Brewster, Higgins, et al., 2023), yet they are often overlooked. As a result, many caregivers may not seek a formal diagnosis or treatment, allowing their sleep difficulties to persist or worsen over time. Notably, only one in three caregivers report keeping up with annual physicals and routine health care appointments (Guardian, 2023), further reducing the likelihood that insomnia or sleep-related concerns will be identified and addressed. Given that many caregivers are older adults, they may be particularly affected by broader trends in clinical care, where older patients are less likely to be referred for cognitive-behavioral therapy for insomnia—the recommended first-line treatment—and more likely to be prescribed sleep medications, which many caregivers are reluctant to use (Sun et al., 2021). These findings highlight the need for early, accessible, and caregiver-specific interventions that address sleep problems before they escalate into more serious health concerns.

The interconnectedness between PLWD behavior and caregiver sleep was particularly salient. Caregivers described how nighttime behaviors, such as wandering, restlessness, and frequent awakenings, directly disrupted their sleep. Even when the PLWD was asleep, caregivers reported remaining in a heightened state of vigilance, contributing to fragmented and poor-quality sleep. Similar findings have been reported in other studies. For instance, Gibson and Gander (2021) found that the sleep difficulties of PLWD, including problems falling asleep and staying asleep, were closely associated with caregivers’ sleep disturbances. A recent study also demonstrated that a timed activity intervention improved sleep among a subgroup of PLWD (Hodgson et al., 2023), suggesting that interventions aimed at improving the sleep of PLWD may also enhance caregiver sleep.

Caregivers also cited role overload and emotional strain as barriers to sleep, particularly the challenge of balancing caregiving duties with personal responsibilities. Interventions that strengthen caregiver self-efficacy and reduce stress have the potential to improve sleep health outcomes. For example, a meta-analysis by Cheng and Zhang (2020) found that nonpharmacological, multifactorial interventions incorporating psychoeducation, psychotherapy, and occupational therapy yielded the greatest improvements in caregiver outcomes. Of note, the psychoeducational intervention for the current study, Tele-Savvy, which reduced caregiver stress, depressive symptoms, and promoted better self-care, also significantly reduced insomnia symptoms (Brewster, Higgins, et al., 2023).

Some caregivers identified lifestyle and behavioral strategies as facilitators of sleep, including exercise, mindfulness, and adopting sleep hygiene practices. However, participants also described using strategies—such as watching television or drinking alcohol before bed—that are known to negatively affect sleep quality. Exposure to blue light from electronic devices suppresses melatonin production, disrupts circadian rhythms, and contributes to shorter sleep duration and poorer sleep quality (Wahl et al., 2019). In addition, alcohol—although a central nervous system depressant that can initially induce drowsiness—is rapidly metabolized by the body, often leading to nighttime awakenings and lighter, less restorative sleep (Baranwal et al., 2023). Therefore, it is important to educate caregivers about evidence-based sleep hygiene practices to ensure their efforts to improve sleep are effective.

Although participants expressed a preference for nonpharmacological sleep solutions, some acknowledged the benefits of sleep medications. This ambivalence suggests that caregivers may benefit from more guidance on safe and effective treatment options. Interventions that offer a range of behavioral strategies while also providing information on the judicious use of sleep aids may be particularly beneficial.

Finally, these findings emphasize the interconnected nature of sleep within caregiving dyads. Addressing sleep as a shared experience may yield greater benefits for both members of the dyad. Dyadic sleep interventions—incorporating education on sleep hygiene, stimulus control, physical activity, and behavioral management—can reduce nighttime wakefulness and improve sleep for caregivers and PLWD (Brewster, Pelkmans, & Hepburn, 2023; Song et al., 2021).

LIMITATIONS, FUTURE RESEARCH, AND STRENGTHS

The current study has several limitations. First, the use of a convenience sample comprising primarily well-educated, White caregivers limits the generalizability of findings to more diverse populations. Second, all participants were enrolled in a randomized controlled trial, and their greater engagement with research or support programs may not reflect the broader caregiver population. Third, although depression was a primary target of the intervention, improvements in mood may have indirectly reduced insomnia symptoms, given the well-established link between sleep and depression (Brewster, Higgins, et al., 2023; Fang et al., 2019), potentially shaping how participants perceived and reported their sleep disturbances. Furthermore, as interviews were conducted 6 months After trial participation, caregivers’ assigned intervention arms and the time elapsed may have also influenced their recall and framing of sleep-related experiences. Fourth, the study relied solely on caregiver reports and did not collect data on the sleep patterns or needs of PLWD, limiting dyadic-level interpretations. Finally, the absence of cognitive or dementia staging data prevents exploration of how caregiver sleep may differ based on disease stage.

Despite its limitations, the study has several strengths. It focused on caregivers experiencing insomnia symptoms—a population with significant unmet needs—and used a qualitative approach to capture a detailed understanding of sleep barriers and facilitators grounded in caregivers’ lived experiences. As one of the few studies to explore sleep health from the perspective of caregivers of PLWD, it offers significant information to guide the development of tailored, proactive, and contextually relevant interventions for this group.

Although the study focused solely on caregivers, findings underscore the interrelated nature of caregiver sleep and the behaviors of the PLWD, suggesting that sleep disruption may be a shared experience within caregiving dyads. Future research should incorporate dyadic designs that assess both members of the caregiving pair to more fully capture bidirectional influences on sleep. Including formal assessments of dementia stage and cognitive function would further clarify how sleep needs evolve across the disease trajectory. In addition, efforts should be made to recruit more socioeconomically and racially diverse caregivers to enhance the generalizability and cultural relevance of findings. Longitudinal and mixed methods studies are also needed to examine how sleep experiences shift over time and in response to changing caregiving demands.

CONCLUSION

Given the high prevalence of sleep disturbances among caregivers of PLWD, the current study contributes to our understanding of their sleep challenges by identifying several modifiable barriers and facilitators that can inform future interventions. Caregivers described how their sleep was influenced by the behaviors of the PLWD, the responsibilities and emotional demands of caregiving, and their own health conditions. They also shared strategies that helped support better sleep, including lifestyle changes and nonpharmacological approaches.

These findings underscore the need for early, proactive interventions that are tailored to the evolving needs of caregivers. Interventions that incorporate nonpharmacological strategies, address caregiver burden, and consider the interconnected nature of sleep within the caregiving relationship may be particularly effective. Although this study focused solely on caregivers, results point to the value of exploring dyadic approaches that engage caregivers and PLWD. Future research should examine whether improving sleep in PLWD leads to better sleep for caregivers and should explore accessible, culturally relevant approaches to support caregiver sleep health over time.

Funding:

This study was supported by a research supplement to support diversity in health-related research awarded to Glenna Brewster (R01AG054079, principal investigator [PI]: Hepburn/Griffiths) and K23AG070378 (PI: Brewster).

Footnotes

Disclosure: The authors have disclosed no potential conflicts of interest, financial or otherwise.

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