Approximately 21% of Americans (53 million) provide unpaid care for a family member, friend, or neighbor (1). Of those, about half care for persons living with dementia (PLWD) (2). Beyond unpaid care, between 25 and 50% of community-dwelling PLWD also receive paid care (3). Given dementia caregiving is considered a chronic stressor (4) examining ways to address the burden of caring for PLWD is an important area of research (5).

Paid and unpaid caregivers are exposed to a challenging caregiving context that impacts their physical and psychological wellbeing (6, 7). However, the complex nature of dementia caregiving carries an added burden compared to non-dementia care environments. For example, caregiving tasks are more intense and require more time to perform for PLWD compared to other care recipients. PLWD also require more assistance with activities of daily living (ADL) and instrumental activities of daily living (IADL) and require assistance for a longer duration (8–11). Because of this high care burden context, caregivers of PLWD report significantly poorer physical and mental health outcomes than other caregivers (9–12).

Research on the care burden and demands of caregivers of PLWD has identified several key contributing factors. Functional decline and ADL-IADL performance progressively worsen as dementia progresses, thereby increasing levels of dependency on others (13–16). In a longitudinal study, the average hours of care per month for community-dwelling PLWD increased by 131 h over an eight-year period (17). The occurrence and severity of behavioral and neuropsychiatric symptoms (BNPS) also worsen as dementia progresses, which increases the complexity of care (14, 16, 18–21). The burden of caring for PLWD becomes even more complicated when the individual has other comorbid conditions (22). Several studies report that care tasks become more difficult and time consuming as the number and severity of chronic conditions increase (16, 22).

Overall, caregiver burden may be more pronounced among caregivers of female PLWD. When examining all-cause dementia, females exhibit faster decline in cognitive and executive functioning (23) and more neuropsychiatric symptoms such as delusions, hallucinations, and depression than men (24–28). Paradoxically, females also experience higher chronic disease and frailty burden, despite having lower mortality rates (29–31). Thus, female PLWD may require greater assistance for longer periods than males of the same age.

The demands of caregiving typically increase as duration of care extends. In contrast to adaptation theory, wear-and-tear theory posits that providing care for an extended period can have a negative impact on the caregiver (32). Prolonged caregiving can take a considerable toll on an individual and the cumulative effects of chronic stress and caregiver burden may erode an individual’s ability to provide care effectively. In a three-year longitudinal study, prolonged caregiving was associated with increased burden in caregivers without support (33). Moreover, because individuals with advanced dementia require more assistance, caregiver task difficulty and time may increase over time (20). Individuals may be more likely to seek paid caregiving support to ease the burden of care (34).

Most research confirms that high intensity care demands, such as ADL and IADL assistance, are associated with worse emotional and physical health outcomes for caregivers (7, 35, 36). For example, completing physically demanding care tasks, such as bathing, dressing, and transferring (7, 37, 38), is associated with increased risk of emotional, physical, and financial burden (39). Similar findings have been reported elsewhere (40, 41). However, a separate systematic review concluded that objective measures of care demands, such as number of tasks and assistance with ADLs or IADLs, do not always contribute to poorer quality of life (42), which underscores the variability in perceptions of the degree of difficulty of the care context among caregivers.

Baseline data were analyzed from 109 paid and unpaid caregivers of PLWD (Table 1). On average, the caregivers were age 58.87 (±15.76; range: 19–85) years. Most caregivers were female (78.4%), 56.0% lived with their care recipient, and 63.3% self-identified as unpaid caregivers. In terms of the relationship with their care recipients, 33.9% of caregivers reported being their spouse, 18.3% were their adult children, 11.0% were their other relatives, and 11.9% were non-relatives. About 62% of caregivers provided care to their care recipient for one or more years, with 26.6% providing care for five or more years. On average, caregivers reported providing 30.14 (±26.71) weekly hours of care to their care recipient. When comparing caregiver characteristics by caregiver type, on average, paid caregivers were younger than unpaid caregivers (i.e., 47.54 vs. 65.56, t = 6.77, p < 0.001) and cared for their care recipients for shorter durations (t = 2.62, p = 0.010). Relative to unpaid caregivers, smaller proportions of paid caregivers were male (i.e., 28.8% vs. 10.3%, χ² = 4.92, p = 0.027) and lived with the care recipient (i.e., 81.2% vs. 12.5%, χ² = 48.44, p < 0.001). Relative to unpaid caregivers, smaller proportions of paid caregivers were the spouse (i.e., 52.2% vs. 2.5%, χ² = 27.87, p < 0.001) or adult child (i.e., 24.6% vs. 7.5%, χ² = 4.96, p = 0.026) of their care recipients.

When reporting on behalf of their care recipient, on average, caregivers reported their care recipients were age 78.90 (±8.49; range: 64–100) years and had 2.08 (±2.96) chronic health conditions. Most care recipients were female (57.5%) and resided in single-family homes (65.1%). An additional 17.4% resided in individual apartments or condominiums and 16.7% resided in independent living community or assisted living facility. On average, care recipients’ baseline MMSE score was 22.60 (±2.67; range: 13–28), with most falling in the mild cognitive impairment range. When comparing care recipient characteristics by caregiver type, a smaller proportion of paid caregivers cared for male care recipients (i.e., 62.1% vs. 10.0%, χ² = 27.70, p < 0.001). On average, relative to unpaid caregivers, care recipients of paid caregivers had more chronic conditions (i.e., 1.07 vs. 3.87, t = −4.02, p < 0.001). Relative to unpaid caregivers, smaller proportions of paid caregivers had care recipients that resided in single-family homes (i.e., 79.4% vs. 42.5%, χ² = 24.20, p < 0.001) and had additional paid caregivers for their care recipients (i.e., 82.4% vs. 50.0%, χ² = 11.30, p < 0.001).

Table 2 reports the average scores for the OCBS sub-scale composite scores as well as average score for each sub-scale item, which are compared by caregiver type. On average, caregivers’ OCBS time sub-scale scores were 39.82 (±13.27) and their OCBS difficulty sub-scale scores were 25.62 (±11.25). OCBS time and difficulty sub-scale scores were significantly positively correlated (r = 0.60, p < 0.001). For the OCBS time sub-scale, the five tasks with the highest time-related burden were household tasks, emotional support, monitoring symptoms, transportation, and errands. For the OCBS difficulty sub-scale, the five tasks with the highest difficulty-related burden were behavior problems, emotional support, communicating with care recipient, household tasks, and communicating with healthcare professionals.

When comparing the OCBS time sub-scale by caregiving type, no significant difference in the composite score was observed between unpaid and paid caregivers. On average, relative to paid caregivers, unpaid caregivers reported higher time burdens with transportation (t = 3.07, p = 0.003) and finances (t = 2.29, p = 0.024). Conversely, on average compared to unpaid caregivers, paid caregivers reported time burdens with household tasks (t = −2.10, p = 0.038), emotional support (t = −2.80, p = 0.006), monitoring symptoms (t = −3.64, p < 0.001), treatments (medications) (t = −2.82, p = 0.006), personal care (t = −2.31, p = 0.023), and mobility (t = −2.37, p = 0.020).

When comparing the OCBS difficulty sub-scale by caregiving type, unpaid caregivers reported higher average composite scores than paid caregivers (t = 3.20, p = 0.002). On average, relative to paid caregivers, unpaid caregivers reported higher difficulty burdens with household tasks (t = 2.42, p = 0.017), emotional support (t = 3.30, p = 0.001), transportation (t = 3.24, p = 0.002), errands (t = 2.81, p = 0.006), behavior problems (t = 2.02, p = 0.046), planning activities (t = 2.81, p = 0.006), communicating with the care recipient (t = 2.76, p = 0.007), finances (t = 2.46, p = 0.015), and finding resources (t = 3.25, p = 0.002).

Table 3 reports findings from the OLS regression model fitting caregivers’ task time burden. On average, caring for men, compared to women, was associated with lower task time burden (β = −0.29, p = 0.006). Caring for care recipients with higher baseline MMSE scores (β = −0.20, p = 0.015) and more chronic health conditions (β = 0.31, p = 0.011) was associated with higher task time burden. On average, caregivers who cared for their care recipient for longer durations (β = 0.28, p = 0.004) and whose care recipients also had other paid caregivers (β = 0.30, p = 0.031) reported higher task time burden. On average, higher emotional stress levels experienced by caregivers was also positively associated with higher task time burden (β = 0.30, p = 0.020).

Table 3 also reports findings from the OLS regression model fitting caregivers’ task difficulty burden. On average, caregivers with higher emotional stress levels experienced higher task difficulty burden (β = 0.30, p = 0.029). On average, caregivers with higher depressive symptomatology levels experienced higher task difficulty burden (β = 0.32, p = 0.002).

This study identified several factors associated with caregiving task time and task difficulty burden among paid and unpaid caregivers of PLWD (47, 48). Care recipients’ characteristics can affect the degree of burden experienced by unpaid and paid caregivers. Results from the present study reveal that task time burden was influenced by several factors including the sex, physical condition, and cognitive status of the care recipient. Research suggests that caring for men is generally more difficult than caring for women (53); however, in the present study, caring for men was associated with lower task time burden. Women have greater risk of functional impairment and cognitive decline than men (23, 54), factors that may contribute to higher ADL- and IADL-dependency. This may explain the higher task time burden associated with caring for women.

Findings also suggest that caregivers of PLWD with more chronic conditions and lower cognitive function report higher task time burden. The care dependent/time interaction is well-established in the literature. Specifically, low ADL and IADL levels increase caregiving time (13, 20, 22, 41). This care encompasses assistance with basic daily activities and ongoing medical care (55, 56), which can include frequent medications, symptom management, monitoring, and more care planning. Coordinating care with multiple healthcare providers, which is common for individuals with multiple chronic conditions (57), requires time-consuming effort to be allocated to care coordination and communication, contributing to the higher task time burden.

Task time burden reported by caregivers of PLWD with lower cognitive function can be due to the additional support and supervision that is required as the disease progresses. Dementia is a progressive disease, which results in declining independence and deteriorating cognitive function in the care recipient over time. Caregivers of PLWD in more advanced stages of the disease are often involved in providing constant supervision for the safety of the care recipients and may spend more time assisting with communication and interpreting the needs of their care recipients (17, 21, 58, 59).

Caregivers working with other paid caregivers and those providing longer duration of care also reported higher task time burden related to caregiving. Duration of care is among the strongest predictors caregiver burden (20, 44). While having a team of caregivers may intuitively appear to support caregivers, it can also require additional coordination among the caregivers. These additional time-consuming tasks include coordinating care tasks and schedules among caregivers, communicating key information across the caregiving team, and ensuring care services are consistent across the team (60). These tasks are often time consuming and when added to caregiving duty, it can result in burden associated with task time. It may also result in conflicts in the care team, which further increases the time spent resolving differences and disagreements.

In the current study, caregivers with higher emotional stress reported higher task time and task difficulty burden; whereas depressive symptomology contributed to higher burden related to task difficulty. Caregiving can have an intense emotional toll on the caregiver (7, 36, 61, 62). Among caregivers with pre-existing mental health conditions, the emotional burden from caregiving can be further amplified (63). Feelings of stress, fatigue and being overwhelmed from caregiving tasks can result from caregivers juggling the management of their own mental health while coping with the demands of caregiving, and having reduced resilience to cope with caregiving demands (64, 65). Additionally, there is a robust association between care burden and psychological distress among PLWD caregivers compared to individuals caring for stroke survivors or persons with frailty but no cognitive decline (66). Individuals with symptoms of depression are also more likely to face social isolation and lack of social support (67, 68). Given the importance of social support in managing caregiver burden, the lack of this can be a driving factor that increases the burden felt by caregivers with pre-existing mental health conditions (69).

In the current study, paid and unpaid caregivers reported differences in caregiving situations and caregiving burdens. Unpaid caregivers more frequently cared for individuals with fewer chronic comorbidities, but they were more likely to provide care within single-family homes, be the care recipients’ spouse or adult child, and provide care without additional paid caregiver support. While task time composite scores were similar across paid and unpaid caregivers, unpaid caregivers felt more time burden associated with managing logistics (i.e., transportation, finances) and paid caregivers expressed the time burdens associated with direct patient care (e.g., monitoring symptoms, treatment, personal care, mobility). These findings support previous literature about the unique challenges of unpaid caregivers to balance the time needed for caregiving duties, family responsibilities, and employment demands (1, 70). As such, while these tasks may not require large amounts of time per se, the time taken from other competing demands may cause feelings of burden among unpaid caregivers who are not being compensated for their time spent caregiving (1, 70). Unpaid caregivers reported higher task difficulty composite scores compared to paid caregivers. Unpaid caregivers generally reported more task difficulty managing logistics (e.g., household tasks, transportation, errands, finances), coordination (e.g., planning activities, finding resources), and interactions with their care recipient (e.g., emotional support, communicating with care recipient). Relative to paid caregivers, unpaid caregivers may perceive these tasks to be more difficult because they have not been formally trained to execute these tasks (71) or have limited finances to acquire caregiving support or resources (71). Further, unpaid caregivers may perceive tasks as more difficult because of the emotional distress related to the failing health or suffering of a loved one (72).

Study findings align with policy priorities of national organizations (73, 74), who recommend policy changes and strategies to support paid and unpaid caregivers in the United States. Reported difficulty associated with household tasks, errands, and transportation reinforce the need to build the national infrastructure of available, accessible, and affordable home- and community-based services (HCBS). These services can provide support to caregivers and provide them with respite opportunities to meet their own household logistics and emotional demands. Strategies to improve access and utilization of HCBS can include tax deductions for out-of-pocket care expenses, long-term care social insurance options, or paid family leave for employed caregivers (73). Expressed difficulty communicating with healthcare professionals highlights the need for productive and informed interactions between caregivers and the care recipients’ healthcare providers. Strategies to improve healthcare providers’ understanding about the unique caregiving circumstances of their care recipients include routinizing formal assessment of unpaid caregiving needs in clinical settings and incentivizing healthcare systems to incorporate unpaid caregivers into healthcare decision making processes (73). Considering the growing need for paid caregivers and the expanding caregiving workforce gap, dedicated efforts are needed to improve paid caregiver wages for HCBS for paid caregivers, expand training and vocational opportunities to grow the workforce, and establish standardized training and accreditation nationwide (73, 74).

This study examined factors associated with caregiving burden in terms of task time and task difficulty among paid and unpaid caregivers of PLWD. Our study’s results highlight the relationship between objective measures of caregiver burden and the impact on mental health. While the care recipient’s disease profile and needs were drivers of task time burden, which may also require coordination with other paid caregivers, task difficulty was emotionally driven. Caregiving burdens differed in terms of task time and task difficulty by the caregivers’ paid/unpaid status. Findings from our study have implications for clinicians, practitioners, and community organizations working to support caregivers of people living with dementia. More specifically, our study’s findings highlight the critical need for caregiver support services and mental health programming.