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. 2019 Jul 19;59(5):e512–e520. doi: 10.1093/geront/gnz099

Financial Strain, Employment, and Role Captivity and Overload Over Time Among Dementia Family Caregivers

Yin Liu 1,✉, Malinda Dokos 1, Elizabeth B Fauth 1, Yoon G Lee 1, Steven H Zarit 2
Editor: Suzanne Meeks
PMCID: PMC6857684  PMID: 31322654

Abstract

Background and Objectives

This study examined how financial strain and changes in employment status affect subjective stressors over 12 months in 184 family caregivers of individuals with dementia.

Research Design and Methods

Subjective stressors of role overload and role captivity, and employment status were measured at baseline, 6-, and 12-months. Self-reports on financial strain were measured at baseline only. Caregivers were categorized into 3 groups based on changes in their employment status during the study over 12 months: (a) who were never employed, (b) who experienced some sort of employment status change, either going from employment to unemployment or vice versa, and (c) who were always employed. Growth curve analyses were conducted to examine within-person changes in role overload and role captivity, and associations with employment and financial strain.

Results

Caregivers with greater financial strain at baseline had higher levels of role overload and increasing role captivity over time. Caregivers who experienced a caregiving transition and had low financial strain at baseline showed greater decrease in role captivity over 12 months. Although caregivers who were consistently unemployed reported lower levels of role overload, they also showed steeper increase over time than those who were consistently employed.

Discussion and Implications

Caregivers’ perceptions of financial strain add to the long-term stress of the caregiving role. Changes in caregivers’ employment status may have complex associations with their feelings of stress over time.

Keywords: Dementia family caregiving, Role overload, Relationship type, Longitudinal study

The stress process model of caregiving highlights multiple sources of stress incurred in providing care for a family member with dementia, including financial strain (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995). Balancing work and caregiving duties is a common experience in the United States (Family Caregiver Alliance, 2016) and paid employment can make round-the-clock care at home very demanding. On the other hand, caregiving responsibilities may reduce the person’s ability to work, and can exacerbate financial difficulties in providing care. Although associations between financial strain and outcomes for caregivers have been established in a general sense, this study examines these relationships more closely, measuring the extent to which financial strain and caregiver’s employment status (i.e., employed, not employed) are associated with changes over time in two care-specific subjective stress measures, role overload and role captivity.

The Stress Process Model

The stress process model differentiates between primary and secondary stressors, which can have objective and subjective dimensions. Primary stressors are those directly related to caregiving, such as cognitive status, behavioral changes, and level of dependency of the person with dementia. Secondary stressors are the spillover of changes caused by the role (primary stressors) into other areas of the caregiver’s life, including work-family conflict and financial strain. Although the stress process model implies directionality from primary to secondary stressors, effects over time are likely reciprocal, where changes in one area affect changes in other areas. Empirical studies have found that both primary and secondary stressors contribute to caregiver burden and distress (Aneshensel et al., 1995; Peetoom, Lexis, Joore, Dirksen, & Witte, 2016).

Role overload and role captivity are primary subjective stressors, which are types of perceived stress directly related to the caregiving role (Aneshensel et al., 1995). Role overload is defined as the subjective feelings of being overwhelmed by care-related responsibilities, whereas role captivity is the feeling of being an involuntary incumbent of the caregiving role. These constructs are not traits; rather both types of stressors are sensitive to changes over time (Aneshensel et al., 1995), and are responsive when interventions or resources are introduced to the caregiver, such as respite care (Zarit, Stephens, Townsend, & Greene, 1998).

These primary subjective stressors are important indicators of well-being because they relate to key caregiving outcomes. Role captivity predicts placement of the person with dementia into a care facility (Cho, Zarit, & Chiriboga, 2009). In addition, changes in role overload and role captivity relate to changes in depression over time (Aneshensel et al., 1995). The advantage to studying these stressors versus studying global outcomes, such as well-being or depressive symptoms, is that role captivity and overload capture experiences embedded in the caregiving role, whereas depression can be influenced by caregiving, but also many other varied experiences.

Financial Strains and Dementia Caregiving

Dementia care can be more costly than other caregiving situations (Jutkowitz et al., 2017; Leibson et al., 2015), such as caregiving for other terminal illnesses (Kelley, McGarry, Gorges, & Skinner, 2015). Studies of financial difficulties and dementia caregiving often use a macro-level or population-based approach, such as calculating costs of paid health care and long-term care (see Alzheimer’s Association, 2018 for a comprehensive report), or the financial value of the hours and services that unpaid caregivers provide for their loved one (Rattinger et al., 2015). These calculations identify high levels of financial costs for value of services otherwise being provided for free by informal caregivers (Family Caregiver Alliance, 2016).

On a micro-level, financial well-being is examined via experiences of the caregiver, such as assessing individual out-of-pocket costs, and/or perceived financial difficulties associated with caregiving. Although informal care involves free labor, financial costs of caregiving may include health care costs of the care recipient and caregiver, adaptations and devices in the home, hired assistance for activities of daily living (e.g., driving, house cleaning), and institutionalization (Peetoom et al., 2016). Caregivers of individuals with dementia report varying degrees of care-related financial difficulties (DaDalt, Burstein, Kramer, D’Amrosio, & Coughlin, 2016); however, caregivers who report high levels of caregiving burden considered financial strain as a major contributing concern for their own quality of life (Coen, O’Boyle, Coakley, & Lawlor, 2002).

Both objective financial indicators (e.g., income, expenditures) and subjective financial indicators (financial strain) predict overall caregiver well-being, but the latter plays a larger role. For example, Sun, Hilgeman, Durkin, Allen, and Burgio (2009) found that the amount of household income reported did not predict caregiver depression, but feelings of income inadequacy were positively associated with depression and anxiety. In studies of African American caregivers, those who reported higher household income or higher educational levels were more likely to also report feelings of role overload (Diwan, Hougham, & Sachs, 2004; Wallace Williams, Dilworth-Anderson, & Goodwin, 2003). Interestingly, when compared to those who care for individuals with other health conditions, dementia caregivers reported more financial hardship, although their monthly spending was comparable (Ory, Hoffman, Yee, Tennstedt, & Schulz, 1999).

Employment Status of Dementia Caregivers

A systematic review of informal caregivers’ participation in the labor force reported that around 50% of family caregivers were actively engaged in work outside the home (Lilly, Laporte, & Coyte, 2007). Previous literature showed mixed findings about the associations between caregivers’ employment status and caregiving outcomes. Disadvantages of being an employed caregiver included that they were more likely to be absent for partial workdays, reduce work responsibilities, turn down promotions, and terminate jobs to cope with caregiving responsibilities (Lilly, Laporte, & Coyte, 2007). Andrén and Elmståhl (2007) found that the largest financial cost for employed caregivers of parents with dementia was lost time working due to caregiving duties. In addition, caregivers who missed work reported they had conflicting roles and suffered more psychological strain (for example, making mistakes at work and having trouble remembering things) than those who did not (Barling, MacEwan, Kelloway, & Higgingottom, 1994; Ory et al., 1999).

There are potential benefits when caregivers are employed outside the home. Greenhaus and Powell (2006) postulated that having multiple roles (e.g., employment and informal caregiving) may act as a buffer for dissatisfaction in one of the roles. One benefit may be work-related social interactions. Caregivers who reported being satisfied with their social interactions also reported fewer negative psychological symptoms (Brodaty & Donkin, 2009), less role overload, and more gain from the caregiving experience (Kramer, 1997). In addition, working outside the home can increase income. Caregivers who report higher income levels also report better physical and emotional health, compared to those who reported lower income (Crouch, Probst, & Bennett, 2017).

Studies on caregiver employment status and well-being have typically focused on global outcomes, but associations with primary subjective stressors have also been examined to some extent. For example, role overload and depression do not differ between employed and unemployed dementia caregivers (Edwards, Zarit, Stephens, & Townsend, 2002). Further, caregiving and employment may not be associated with role overload (Dautzenberg et al., 2000). Employed caregivers report both positive and negative spillover from their caregiving experiences to employment and vice versa (Stephens, Franks, & Atienza, 1997). Caregivers who felt they had job flexibility and support from their employer reported lower caregiving role strain (Fredriksen & Scharlach, 1997), whereas inflexible work schedules and work interruptions due to caregiving responsibilities were correlated with feelings of burden (Reid, Stajduhar, & Chappell, 2010), role strain (Edwards et al., 2002), and lower physical and mental health outcomes (Gaugler et al., 2018; Wang, Shyu, Chen, & Yang, 2011).

Of note, most studies of caregiver employment status were cross-sectional and/or included the variable as a stable characteristic (work status at baseline). It is important to consider that employment status can change, and work transitions can be both the result of increased stress, and can incur additional stress. This study examines employment status, including employment status transitions.

Covariates

We consider additional factors associated with caregiver subjective stressors, such as relationship type, caregiver gender, education, and duration of care as covariates in the current study. Certain relationship types have been associated with better caregiver well-being, and better relationship quality was associated with better physical and psychological outcomes in caregivers (Quinn, Clare, & Woods, 2009). Spouse caregivers were more likely than adult children to report depression, general health deficits, feelings of financial burden, and physical difficulty to manage their responsibilities (Baumgarten et al., 1992; Pinquart & Sörensen, 2011; Schoenmakers, Buntinx, & Delepeleire, 2010). This disparity may be due to older age and decreases in actual physical health, as well as a spouse’s likelihood to live in the same household as the individual with dementia and take on a heavier load of caregiving responsibilities than an adult child caregiver normally would. Adult children caregivers may report experiencing more rewards from their caregiving roles than spouse caregivers (Raschick & Ingersoll-Dayton, 2004). However, providing care for parents is also associated with higher reported burden, compared to other caregiving relationship types (Reid et al., 2010).

Regardless of relationship type, women caregivers reported more negative outcomes from providing care to a family member with dementia than male caregivers (Raschick & Ingersoll-Dayton, 2004; Schoenmakers et al., 2010). Age is also a factor; generally, older caregivers (55+) report lower caregiver burden and role strain than their younger counterparts (Coen et al., 2002). However, older caregivers also tended to report higher levels of depressive symptoms (Schoenmakers et al., 2010). Caregiver education is associated with mixed results, with some studies reporting more years of education loosely associated with self-esteem, well-being, and lower burden (Reid et al., 2010), and others reporting higher education associated with greater emotional strain (Ory et al., 1999). Similarly, there are mixed results about caregiving duration, with multiple studies reporting positive and negative associations with burden (Brodaty & Donkin, 2009).

In longitudinal studies, caregiver transitions are also important to consider (Liu, Kim, & Zarit, 2015). If a caregiver shifts from being the primary caregiver over the duration of the study, through death of the care receiver, institutionalization, or turning the care over to another family member, stress indicators are clearly affected. Bangerter, Liu, and Zarit (2019) confirmed that transitioning out of the primary caregiving role resulted in decreased role captivity and role overload over time.

The Current Study

The current study examined the effects of two secondary stressors, financial strain and changes in employment status, on two primary subjective stressors specific to caregiving: role overload and role captivity. In accordance with the stress process model, we also considered contextual factors such as relationship type, caregiver gender, education, and caregiving transition. On the basis of the stress process model, we hypothesize that financial strain at baseline and changes in employment status over the study duration will both be associated with higher levels of subjective stressors at baseline and increasing stress over time. We also hypothesize that financial strain at baseline will moderate the within-person association between employment status and subjective stressors. Specifically, we expect that associations between employment status and subjective stressors will be stronger among caregivers who had greater financial strain at baseline.

Methods

Participants and Procedures

Participants were 184 primary caregivers who were co-residing with relatives clinically diagnosed with dementia. Primary caregiving was defined as the individual spending the most time helping the person with dementia with daily tasks. They were all using adult day services (ADS) at least 2 days weekly at baseline.

The sample for the current study came from the Daily Stress and Health study (Zarit, Kim, Femia, Amelida, & Klein, 2014). Recruitment took place at 57 ADS programs in New Jersey, Pennsylvania, Virginia, and Colorado. Brochures and information were given to possible participants, who then contacted the research coordinator for eligibility screening. Once enrolled, in-person interviews were conducted to gather sociodemographic information and baseline data. Subsequent data were collected via telephone interviews at 6- and 12-months after baseline.

Measures

Subjective Stressors

Self-reported feelings of caregiving role overload and role captivity were collected at baseline, 6-, and 12-month intervals from each participant. Caregiving role overload and role captivity were both measured by three questions on a 4-point scale (ranging from 1 = None of the time to 4 = All of the time; role overload α = .63, role captivity α = .83), with higher scores indicating higher levels of subjective stress of each type (Aneshensel et al., 1995; Pearlin, Mullan, Semple, & Skaff, 1990). Higher levels of role overload indicated feelings of having more to do than caregivers could handle. Higher levels of role captivity indicated feeling more of being trapped in the caregiver role.

Financial Strain

During the initial interview, participants were administered a two-item scale (α = .63) to assess financial strain that was adapted from Aneshensel et al. (1995). The items were as follows: “In general, how do the finances in your household work out at the end of the month?,” with four possible responses (1 = Some money left over, 2 = Just enough money to make ends meet, 3 = Not enough to make ends meet, and 9 = Refused to answer), and “Do you consider the amount of money you have to spend on caring for your (relative) each month to be?,” with the responses (1 = About what you can afford, 2 = Somewhat more than you can afford, 3 = Much more than you can afford). Following Aneshensel et al. (1995), a mean score was calculated to indicate total financial strain.

Employment Status

Participants reported whether or not they were employed at baseline, 6-, and 12-months interviews (1 = Yes and 0 = No). Using these responses, we created three groups of caregivers: (a) who were never employed, (b) who experienced some sort of employment status change, either going from employment to unemployment or vice versa during the 12 months of the study, and (c) who were always employed during the study over 12 months.

Covariates

The following covariates were controlled for in the models for hypothesis testing: relation type (1 = Spouse, 0 = Other kin relationship), age, gender (1 = Female, 0 = Male), total household income before taxes (measured on an 11-point scale with higher scores indicating higher income), duration of providing care, and transitioning out of the caregiver role over study duration (1 = Transition, 0 = Maintained primary caregiver status).

Data Analyses

We tested the hypotheses on the effects of financial strain and employment status on changes over time in role captivity and role overload using the following series of analyses. First, unconditional models with time as the only predictor were employed to examine the change trajectories in role overload and role captivity over time. Second, caregiving transition was added into the empty model to examine its effect on the two trajectories, respectively (Model 1). Next, financial strain (Model 2) and employment status group (Model 3) was added into Model 1, one at a time, to examine their main effects on the levels, and effects on the linear slope for both role overload and role captivity, respectively. Caregivers who were always employed were the reference group. To examine possible moderating effects, the interaction between financial strain and employment status group was tested for the main effect and its effect on the linear slope of the two trajectories, respectively (Model 4). Caregiving transition was included as a covariate in Model 1, and thereafter all covariates were included.

Results

Descriptive statistics for the sample (N = 184) at baseline are presented in Table 1. Caregivers who transitioned out of the caregiving role over the course of the study (n = 65; 35.33%) did so because of death of the person with dementia (n = 31; 16.85% of total sample) or transition to other living arrangements, most commonly into a nursing home or assisted living (n = 34; 18.48%). Preliminary analysis using the unconditional model with time as the only predictor, adjusted for transitioning out of the caregiving role, showed that both role captivity (β = −.041, p < .000) and overload (β = −.056, p < .000) were decreasing over 6- and 12-months. In Model 2, financial strain at baseline had a main effect on role overload. Specifically, greater financial strain was associated with higher levels of role overload (β = .313, p < .000). In addition, financial strain at baseline had a significant interaction effect with time on role captivity. Specifically, caregivers with low financial strain at baseline who transitioned out of being a primary caregiver in the next 12 months showed a greater decrease in role captivity over 12 months (β = .043, p = .026). Figure 1 shows the significant interaction. Parameter estimates from Model 2 are presented in Table 2.

Table 1.

Characteristics of Caregivers at Baseline and Caregiving Transitions

Mean (SD) or freq. (%) Range
Age 61.5 (10.8) 39–89
Female, n = 159 (86.4%)
Race/ethnicity
 White, n = 130 (70.7%)
 African American, n = 27 (27.2%)
 Hispanic, n = 4 (2.2%)
Married, n = 125 (67.9%)
Educationa 4.43 (1.2) 1–6
Duration of providing care (in months) 60.49 (45.4) 2–264
Employed at baseline, n = 79 (42.9%)
Finance at the end of the monthb 1.64 (0.8) 1–3
Being able to afford the money spent on careb 1.41 (0.7) 1–3
Total household income before taxesc 6.69 (3.1) 1–11
Relationship type
 Spouse, n = 66 (35.9%)
 Adult child (-in-law), n = 109 (59.3%)
 Sibling, n = 3 (1.6%)
 Other, n = 6 (3.3%)
Role captivity 2.11 (0.8) 1–4
Role overload 2.81 (0.6) 1–4
Employment status over 12 monthsd
 Never employed, n = 96 (52.2%)
 Employment transition, n = 27 (14.7%)
 Always employed, n = 61 (33.2%)
Caregivers who transitioned out of role over 12 monthse, n = 62 (33.7%)
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Notes: There were 184 caregivers at baseline.

aEducation was measure on a 6-point scale with higher scores suggesting better education. The scale ranged from 1 = Less than high school, 2 = Some high school, 3 = High school graduate, 4 = Some college/trade/vocational, 5 = College graduate, to 6 = Post college degree.

bFinancial strain was measured by these two items at baseline only; the mean of them was used in the current study.

cTotal household income before taxes was measured on an 11-point scale with higher scores suggesting higher income. The scale ranged from 1 = Less than $10k, 2 = $10k–$19,999, 3 = $20k–$29,999, . . . ., 10 = $90k–$99,999, to 11 = $100k or over.

dEmployment transition was defined as having a paid job outside home at baseline and then not having the job, or vice versa, throughout the study period of 12 months.

eCaregiving transition was defined as transition out of the caregiving role over the course of the study because of death of the care receiver, institutionalization or turning the care over to another family member.

Figure 1.

Figure 1.

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Caregivers who experienced a caregiving transition and had low financial strain at baseline showed greater decrease in role captivity over 12 months.

Table 2.

Parameter Estimates From Model 2 on Associations of Employment Status and Covariates with Role Overload and Captivity

Effect Role overload Role captivity
Parameter estimates (SE) Parameter estimates (SE)
Fixed effects
 Intercept 2.406 (0.370)*** 1.990 (0.510)***
 Time 0.002 (0.004) 0.001 (0.011)
 Caregiving transition 0.203 (0.098)* 0.118 (0.323)
 Time × caregiving transition −0.060 (0.010)*** −0.112 (0.028)***
 Financial strains 0.327 (0.068)*** 0.179 (0.113)
 Caregiving transition × financial strains 0.083 (0.197)
 Time × financial strains −0.003 (0.007)
 Time × caregiving transition × financial strains 0.045 (0.015)**
 Caregiver total household income before taxes 0.015 (0.014) 0.029 (0.020)
 Female caregiver 0.109 (0.117) −0.125 (0.159)
 Caregiver age −0.007 (0.004) −0.004 (0.006)
 Duration of care 0.001 (0.001) −0.001 (0.001)
Random effects
 Intercept VAR 0.189 (0.028)*** 0.400 (0.053)***
 Residual VAR 0.144 (0.012)*** 0.146 (0.013)***
 −2 Log-likelihood 680.8 794.2
 AIC, BIC 684.8, 691.0 798.2, 804.3
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Note: VAR = Variance; AIC = Akaike information criterion; BIC = Bayesian information criterion. *p < .05. **p < .01. ***p < .001.

To examine the association between employment status and subjective stressors over time, Model 3 was fit by adding time-invariant employment status change groups as a predictor. The findings showed that caregivers who were never employed had lower average levels of role overload than caregivers who were consistently employed during the year (β = −.383, p < .000). However, caregivers who were never employed had increasing overload over time compared to those who were continuously employed (β = .021, p = .010). Figure 2 shows the significant association. There were no significant effects for role captivity. Parameter estimates from Model 3 using role overload as the outcome are presented in Table 3. Last, to examine possible moderating effect of financial strain on the association between employment status and subjective stressors, Model 4 was fit by adding the interaction between financial strain and employment status on role overload and captivity, respectively. No significant effects were found.

Figure 2.

Figure 2.

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Caregivers who were never employed experienced lower but increasing role overload over 12 months.

Table 3.

Parameter Estimates From Model 3 on Associations of Employment Status and Covariates With Role Overload

Effect Parameter estimates (SE)
Fixed effects
 Intercept 2.291 (0.368)***
 Time −0.012 (0.007)
 Caregiving transition 0.157 (0.097)
 Time × caregiving transition −0.056 (0.010)***
 Financial strains 0.325 (0.067)***
 Always unemployed −0.367 (0.105)***
 Had any changes in employment 0.048 (0.139)
 Time × always unemployed 0.024 (0.008)**
 Time × had any changes in employment 0.004 (0.012)
 Caregiver total household income before taxes 0.010 (0.014)
 Female caregiver 0.119 (0.114)
 Caregiver age −0.001 (0.004)
 Duration of care 0.001 (0.001)
Random effects
 Intercept VAR 0.180 (0.027)***
 Residual VAR 0.140 (0.012)***
 −2 Log-likelihood 683.0
 AIC, BIC 687.0, 693.2
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Notes: Caregivers who were always employed were the reference group.

*p < .05. **p < .01. ***p < .001.

Additional Analysis

Given spouse caregivers in the current sample tended to be older and not in the workforce, whereas adult children caregivers tended to be younger and employed, additional analyses were conducted to explore whether the hypothesized associations differed between spouse versus adult children caregivers. The analysis showed a significant four-way interaction between employment status change group, caregiver relationship type, transition out of caregiving, and time (β = .075, p = .013). To explore the nature of this significant interaction, submodels were fit using just spouse or adult children caregivers, and those who transitioned out of caregiving versus those who continued as the primary caregivers over the course of study. The findings suggested that among spouse caregivers who left the primary role over the 12-month period and who were never employed were more likely to have higher levels of role captivity over time than those who were always employed (β = .094, p = .039). However, relationship type did not have any other significant main or interaction effect on role overload.

Discussion

This study of dementia family caregivers identified complex associations of financial strain and employment status with changes over time in care-specific subjective stressors. In terms of the effect of financial strain on subjective stressors, greater financial strain was associated with higher levels of role overload in general. Further, caregivers who transitioned out of the role of primary caregiver over the course of study and who had low financial strain at baseline showed decreasing role captivity longitudinally. Employment status was only associated with role overload. Specifically, caregivers who were never employed had lower levels of role overload, but showed increasing overload longitudinally, compared with caregivers who were always employed. We did not find any significant interactions between financial strain and employment on subjective stressors.

Findings that financial strain was associated with caregivers’ levels of subjective stressors are consistent with prior research, which showed that feelings of financial strain were a risk factor for compromised caregiver well-being (Aneshensel et al., 1995), and that caregivers who reported higher caregiving burden were more likely to report finances as a concern for quality of life (Coen et al., 2002). The current study, however, offers insight into the additional complexity of these relationships between financial strain and subjective stressors. Although prior studies focused on global measures (e.g., well-being), nuances in the effects of financial strain were identified using measures specific of subjective stressors that are specific to the caregiving experience. The current study also examined associations cross-sectionally and longitudinally, and when considering caregiving role transitions.

It might be expected that a caregiver who transitions out of the caregiving role experiences reduced role captivity over time, but this decrease was only noted for caregivers with low financial strain at baseline. Role captivity decreased significantly for caregivers who transitioned out of caregiving with low financial strain, but not for caregivers who transitioned out of the role with high financial strain. This latter group also had higher initial levels of captivity, and did not see the large reduction in role captivity after they were no longer primary caregivers. These findings suggested that financially strained individuals may maintain their higher levels of care-related stress and not “recover” from transitioning out of caregiving as quickly as their peers with low financial strain. One possible reason for this association is that caregivers experiencing high financial strain prior to the transition in role may have already incurred costs associated with caregiving that limited their life choices and kept feelings of being trapped in the care role high. Consistent with prior research, the findings also suggest that many may need more extended support beyond the transition from the primary care role (Gaugler, Pot, & Zarit, 2007).

Although employment status was not associated with role captivity, it was associated with caregivers’ role overload. Caregivers who were always employed reported higher levels of role overload than those who were never employed. Employed caregivers must split their time and attention between caring for the person with dementia and keeping up with their job duties at work. Interestingly, although caregivers who were never employed showed lower levels of role overload, they nevertheless experienced increasing role overload longitudinally. It is possible that employment and juggling work and caregiving contribute to strain, but also act as a buffer, allowing for slower increases in role overload over time, perhaps by creating opportunities for caregivers to experience more “life outside caregiving.” More broadly, the finding suggests that objective measures (e.g., employment) and subjective measures (financial strain) have different effects on the stress process.

The hypothesis on the moderating effect of financial strain on the association between employment status and subjective stressors was not supported. The null finding suggested no exacerbating effect of both financial strain and employment status on subjective stressors of caregiving, at least for this sample. We noted that this sample had a little over half of the caregivers who were never employed, approximately one third who were employed for the duration of the study, and about 14% who reported employment status changes (Table 1). In a recent American Association of Retired Persons (AARP) report, a little more than half of family caregivers were reported as employed outside the home (Feinberg, 2016). Thus, with fewer proportions of employed caregivers, our sample may not be reflective of all caregiving populations. It is also possible that our current sample configuration did not have enough power for such employment status related interaction.

These findings have implications for policy and practice. First, it seems that the cumulative effects of financial strain over time warrant further attention in research and in practice settings. In addition, the findings that overload did not increase among employed caregivers suggests that regular use of ADS may make it possible for sustaining care in the community for these caregivers. Conversely, caregivers who were not employed experienced increasing overload over time, suggesting that ADS use alone may not be sufficient to manage their subjective stress. Using programs that offer social support and address issues on social isolation may be especially relevant and helpful for these caregivers’ well-being.

Limitations and Conclusion

This study had some limitations. First, although we focused on examining the effects of financial strain and employment, other factors may also affect how subjective stressors of caregiving change over time. Such factors may include changes in care-related and non-care stressor exposures (i.e., changes and variations in behavior and psychological symptoms of dementia and other daily experiences), available resources such as service use, time for breaks, family support, and even dyadic relationship quality between the caregiver and care receiver. Second, our study included only two questions on financial strain and one question on employment status over time. We were limited in proposing more complex research questions on the association between employment, financial strain and caregiver subjective care-related stressors. Third, the measure on household income was not adjusted for number of people currently living in the same household, which may have different implication for caregivers reporting similar household income levels. Further, some of the variables in this study were measured longitudinally (i.e., role overload, role captivity, employment), but some were only measured at one time (i.e., financial strain). As research on financial well-being in dementia caregiving is limited, future studies should use data sets originally designed to answer questions concerning how employment and finance in caregiving affect caregiver stress and well-being. For example, future studies could examine changes in financial strain over time and how such time-varying strain relates to caregiving subjective stressors.

In conclusion, this study supports general associations between higher financial strain and negative caregiver outcomes, but provides evidence that role captivity and role overload are not the same in their associations with both employment status and financial strain. Financial strain may place stress on caregivers such that they cannot recover from care-related stress, even after they transition out of the caregiving role. In addition, working outside the home may incur additional role overload, but also potentially protect caregivers from increasing in their role overload over time.

Funding

This work was supported by grant R01 AG031758 “Daily Stress and Health of Family Caregivers” from the National Institute on Aging (NIA).

Conflict of Interest

The authors do not have any conflict of interest to disclose.

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