Sharing in Caring: Perceptions of (In)Equality and Mental Health Among Siblings Caring for a Parent With Dementia

Abstract

Care for a parent with dementia is often shared among multiple adult children, yet it is not always evenly distributed. Guided by the family stress process model, this study examined associations between perceptions of care equality, depressive symptoms, loneliness, and positive affect among 208 adult children caring for a parent with dementia within 110 families from the Siblings Caring for a Parent with Dementia Study (mean age = 58.36, SD = 9.38; 89% women), and mediating roles of caregiver burden and social support. When adult child caregivers perceived that they were contributing more to parental care than their sibling, they reported greater depressive symptoms than participants who reported equal care. Unequal care was linked to depressive symptoms, loneliness, and positive affect via caregiver burden but not social support. Perceptions of (un)equal divisions of care are associated with adult children’s mental health, representing potential caregiving intervention targets.

Keywords

caregiving dementia adult children caregiver burden mental health depression loneliness

It is estimated that 7.2 million individuals in the United States have Alzheimer’s disease or a related dementia (ADRD; Alzheimer’s Association, 2025), and over half of the caregivers of older adults with ADRD are adult children (Wolff et al., 2018). Family caregivers of older adults with ADRD are at an elevated risk of adverse physical and mental health outcomes (Ma et al., 2018; Pinquart & Sörensen, 2003). Although much of the research on family caregivers of older adults with ADRD has taken the perspective of a single primary caregiver, a growing number of studies have shown that caregiving is usually a “family affair” negotiated among siblings (Keith, 1995; Kokorelias et al., 2021). Siblings can be a source of stress and support to each other during caregiving (Bagautdinova et al., 2023; Ngangana et al., 2016), particularly regarding their perceptions of the division of parental care (Lin & Wolf, 2020; Tolkacheva et al., 2011). In turn, how much care adult children see themselves as contributing relative to their siblings may shape their level of burden and perceptions of crucial resources like social support (Milkie, 2009), both of which have implications for adult child caregivers’ mental health (Falzarano et al., 2022; Pinquart & Sörensen, 2003).

Guided by the family stress process model, this study examines associations between perceptions of care equality, depressive symptoms, loneliness, and positive affect using survey data collected from 208 adult children nested within 110 families as part of the Siblings Caring for Parents with Dementia Study. We extend previous research by considering the association between adult children’s perceptions of equality in parental care provision and mental health, as well as whether caregiver burden and perceived social support mediate this association. Focusing on adult children is important because adult children hold strong normative expectations to provide care to their parents and are sensitive to the division of care among each other (Brody, 1998; Ingersoll-Dayton et al., 2003; Kokorelias et al., 2021, 2022).

Theoretical Framework

The caregiving stress process model (Pearlin et al., 1990) was originally conceptualized as an individual phenomenon; therefore, the focus of most previous research has been on a single primary caregiver (Penning & Wu, 2016). Although the model posits that background characteristics, including family and care network factors, shape individuals’ experiences with care (Pearlin et al., 1990), the dynamics between family caregivers have been underexamined. Thus, moving beyond the individual caregiver, the family stress process model (Milkie, 2009) advocates for extending the model by considering care needs as a family-level stressor and calls for greater research attention to relational factors in the caregiving context (Fincham & Rogge, 2010). Guided by the family stress process model, this study examines the association between adult children’s perceptions of equality in ADRD parental care provision and mental health.

The family stress model describes “family-level” stressors as both objective and subjective stressors to which caregivers are exposed (Milkie, 2009; Pearlin et al., 1990). Milkie (2009) emphasizes that variability in the degree to which family members share responsibility for family-level stressors carries mental health consequences, and advocates for research testing whether equal or unequal distributions yield better outcomes. Consequently, we consider perceptions of equality in ADRD parental care provision to be a novel family-level subjective stressor (Ashida et al., 2018). We focus on perceptions of equality versus an objective stressor (e.g., number of hours of care provided) because the number of caregiving hours or tasks each sibling devotes to care may matter less for their mental health than how they perceive their contributions relative to their siblings, and whether these perceptions align with societal and family expectations for caregiving roles. Indeed, among 1,773 adult child caregivers, the frequency of care provision was unrelated to psychological well-being or distress, whereas the subjective evaluation of the care experience was (Skoblow & Gilligan, 2025). Therefore, in this study we focus on adult children’s perceptions of equality in parental ADRD care provision.

The family stress process model also describes how burdens and resources can mediate the associations between family-level stressors and caregiver outcomes (Milkie, 2009; Pearlin et al., 1990). Therefore, in addition to adult children’s perceptions of equality as a family-level stressor, we also consider potential burden and resources in the association between perceptions for equality in parental ADRD care provision and mental health outcomes. Specifically, we examine whether perceptions of caregiver burden and social support mediate associations between perceptions of care equality and mental health.

Perceptions of Care Provision (In)Equality and Mental Health

Prior research has demonstrated associations between caregivers’ perceptions of equality in ADRD care provision and mental health; however, this previous work has focused on broad caregiving networks. Ashida and colleagues (2018) examined the associations between 72 ADRD caregivers’ perceptions of equality in caregiving processes and psychological distress. These researchers found that caregivers’ perceptions of family members’ under-contribution to care were associated with more depressive symptoms. Conversely, individuals who perceived that more family members were providing care reported fewer depressive symptoms than those whose families were less involved, suggesting that viewing care responsibilities as more evenly distributed may promote better caregiver outcomes. In this previous work, Ashida and colleagues (2018) defined family caregivers as immediate family members of individuals with dementia including spouses, siblings, and adult children, including step and adopted children. Among these family caregivers, 51% were adult children; however, this relationship was only considered as a control variable, masking the potential unique consequences of perceptions of (un)equal care contributions within the sibship. Thus, in the current study, we focus specifically on adult children’s perceptions of equality in ADRD parental care with their siblings.

Focusing specifically on adult children’s perceptions of ADRD parental care equality is important given that over half of the caregivers of older adults with ADRD are adult children (Wolff et al., 2018). Although relatives and non-relatives may form part of the greater caregiving network for people with dementia (Tolkacheva et al., 2011), according to social exchange theory, adult children are more motivated than non-family to care for their parents during health crises because their parents cared for them earlier in the life course (Wan & Antonucci, 2016). Further, adult children in the same family often hold expectations that their siblings will also participate in parental care provision (Ingersoll-Dayton et al., 2003; Kokorelias et al., 2021, 2022), and multiple children are likely to become involved as their parent’s care needs increase (Lin & Wolf, 2020). Previous research has demonstrated that siblings are particularly sensitive to inequalities in parental care provision when parents require intensive care such as in the context of dementia (Brody, 1998; Ingersoll-Dayton et al., 2003). As a result, adult children are likely to be attuned to and affected by perceived (in)equality among their siblings in the division of ADRD parental care provision.

In this study, we focus on three dimensions of caregivers’ mental health: depressive symptoms, loneliness, and positive affect. Depressive symptoms and loneliness are two related but distinct mental health dimensions commonly experienced by ADRD caregivers (Beeson et al., 2000; Peavy et al., 2022). First, Ashida and colleagues (2018) found that family members’ under-contribution was associated with higher depressive symptoms and, conversely, more family members’ participation was associated with lower depressive symptoms. Similarly, we anticipate that adult child caregivers’ perceptions of equality in care provision with their siblings will be associated with fewer depressive symptoms compared to those who perceive that they or their siblings provide more care. Second, feelings of loneliness are common among caregivers of older adults with dementia (Liao et al., 2024). A review of interventions designed to reduce ADRD caregivers’ loneliness suggests that caregivers benefit when they have another caregiver with whom they can share the caregiving experience (Velloze et al., 2022). As such, we anticipate that adult children’s perceptions of equality in care provision with their siblings will be associated with less loneliness compared to those who perceive that they or their siblings provide more care. Last, scholars have called for dementia caregiver researchers to consider the positive aspects of care provision in addition to the negative aspects (Wolff et al., 2021). In response, we also consider the association between perceptions of care equality and positive affect. We anticipate that adult children who perceived equality in caregiving with their siblings will report more positive affect compared to those who perceive that they or their siblings provide more care.

The Mediating Roles of Caregiver Burden and Social Support

Guided by the family stress process model, we further considered both negative and positive mechanisms linking care (in)equality to mental health: caregiver burden and social support. Caregiver burden, or the degree to which caregiving interferes with and damages one’s daily functioning (Zarit et al., 1986), is associated with poor mental health outcomes, including depressive symptoms and loneliness (Collins & Kishita, 2019; Qian, 2025). Due to the high stress, demands, and uncertainty of dementia, caregiver burden exerts a particularly strong toll on the mental health of ADRD caregivers than in other illness contexts (Ma et al., 2018; Pinquart & Sörensen, 2003). However, evidence suggests that division of care among care network members contributes to caregiver burden. A study showed that when adult children (N = 602) shared care tasks with others, they reported lower levels of caregiver burden (Tolkacheva et al., 2011). Further, family care networks characterized by disagreements over care coordination have been associated with greater caregiver burden and depressive symptoms (Xu et al., 2021). Thus, perceptions of unequal care among siblings may contribute to greater caregiver burden, and, in turn, link to adult children’s mental health.

Prior research also indicates that care (in)equality might predict perceptions of social support. According to the family stress process model (Milkie, 2009), family-level stressors such as perceived unequal care can change the quality of family ties, including the perceptions of social support available to caregivers. Indeed, Cleary and colleagues (2022) found that when ADRD caregivers (59% adult children) viewed family members to be under-contributing to care, they were less likely to consider these relatives as sources of emotional support, suggesting that perceptions of care contributions are linked to perceived social resources. Over-contributing to care might reduce opportunities for social interactions that facilitate support receipt (Qian, 2025), whereas under-contributing may result in being less likely to mobilize support networks because the need is not seen as sufficiently severe (Dunkel-Schetter & Skokan, 1990). Therefore, adult children who perceive unequal divisions of parental care among their siblings may feel less supported and, in turn, experience poorer mental health outcomes.

Moreover, gerontological research has long conceptualized social support as an important contributor to caregivers’ mental health and well-being (Haley et al., 1987; Pearlin et al., 1990), and substantial empirical evidence supports this notion. For example, greater receipt of and satisfaction with social support were associated with fewer depressive symptoms among a sample of 243 ADRD caregivers (Falzarano et al., 2022). Likewise, microlongitudinal research showed that on days when dementia family caregivers (N = 165; 55% adult children) received social support, they were less likely to experience depressive and anxiety symptoms than on days without such support (Puga et al., 2023). Not only is social support related to the adverse consequences of caregiving, but it also promotes beneficial outcomes. For instance, among 705 ADRD caregivers in the National Study of Caregiving, those who reported receiving social support in the form of having friends and family to talk to viewed caregiving as more rewarding than those without this support (Leggett et al., 2021). In other work, ADRD caregivers (N = 229) with highly supportive family members were 4.9 times more likely to report high levels of psychological resilience (Wilks & Croom, 2008).

Summary of Hypotheses

In summary, we test the following hypotheses regarding the associations between adult children’s perceptions of equality in ADRD care provision and mental health outcomes:

Adult children caregivers’ perceptions of equality in care provision with their siblings will be associated with fewer depressive symptoms, less loneliness, and more positive affect compared to those who perceive that they or their siblings provide more care.

Adult children caregivers’ perceptions of equality in care provision with their siblings will be associated with less caregiver burden and, in turn, lower levels of depressive symptoms and loneliness, and higher levels of positive affect compared to those who perceive that they or their siblings provide more care.

Adult children caregivers’ perceptions of equality in care provision with their siblings will be associated with more social support and, consequently, fewer depressive symptoms, less loneliness, and more positive affect compared to those who perceive that they or their siblings provide more care.

Method

Design and Sample

Siblings Caring for Parents with Dementia is a cross-sectional study of health and well-being among adult children (aged 18+) who were providing care for a parent with ADRD. To understand how siblings navigate parental dementia care, adult children who provided care to a parent living with living with dementia were recruited from across the United States with assistance from the Alzheimer’s Association of Iowa; Alzheimer’s Disease Research Centers in Massachusetts, Wisconsin, and Michigan; and national research registries. Interested adult children were asked to share study materials with another sibling in their family who was also involved in the care of their parent, and participants were asked to answer questions regarding the other sibling who they identified as also providing care. Biological, step, adoptive, in-law, and voluntary/fictive sibling ties were eligible. Participants provided informed consent prior to data collection. In the present study, we draw from surveys that captured mental health, care experiences, symptom appraisal, and sociodemographic characteristics, which siblings completed separately between 2022 and 2024. This study was approved by the appropriate institutional review boards. Because some identified siblings did not participate in the study (n = 14), and there were two cases in which participants recruited two siblings (i.e., three siblings from the same family submitted surveys), our analytic sample included 208 adult child caregivers nested in 110 families who completed survey data. Non-response was minimal (ranging from 1 missing observation on participants’ gender to 17 missing observations on parent’s age).

Most siblings (95%) were full biological siblings and 2% were half-siblings; the rest did not report how they were related. Among the families who contributed more than one observation, the majority (77%) were comprised of all sisters, 22% were mixed-gender siblings, and just 1% involved multiple brothers. Of the families in which only one sibling participated, 86% involved sisters attempting to recruit a sister, and 14% involved sisters attempting to recruit a brother. We tested for potential differences in the gender composition of sibships between those who contributed only one observation per family and those with multiple. Results indicated no differences by gender composition, χ² (2) = 0.60, p = .74.

The sample characteristics (N = 208 adults caring for a parent with ADRD) are shown in Table 1. Participants ranged in age from 28 to 75, with most in midlife (M = 58.36, SD = 9.38). The majority were women (89%), college educated (78%), had a spouse or romantic partner (78%), were currently working for pay (67%), and identified as non-Hispanic (95%) and White (88%). Slightly more than one-third reported that they provided more care for their parent than their sibling did (36%), with a similar proportion reporting that their sibling provided more care (36%), and fewer than one-third reporting that care was equally shared with their sibling (28%). Bivariate correlations between target variables are presented in Supplemental Table 1. The sample included 95 sibling dyads (190 participants) from the same family.

Table 1.

Sample Characteristics (N = 208)

Variable	% or M	SD	Range
Age	58.36	9.38	28–75
Gender (% women)	89
Education (% college degree)	78
Marital status (% partnered)	70
Work (% employed)	67
Ethnicity (% Hispanic)	5
Race (% white)	88
Parent’s age	82.25	8.12	55–98
Parent’s gender (% women)	82
Parent’s marital status (% partnered)	37
Parent’s dementia symptoms	7.45	3.65	0–18
Coreside with parent (% yes)	14
Total siblings	3.67	1.81	2–12
Proportion sisters	0.73	0.24	0–1
Care equity (% endorsed)
You care more	36
Sibling cares more	36
Equal care	28
Depressive symptoms	6.22	4.51	0–21
Loneliness	19.82	5.16	10–34
Positive affect	9.73	2.08	5–15
Caregiver burden	1.50	1.09	0–4
Social support	3.40	0.45	1.80–4

Note. Parent refers to the parent with dementia.

Measures

Outcomes

Depressive symptoms were measured with seven items from the Center for Epidemiologic Studies Depression scale (Radloff, 1977; Ross & Mirowsky, 1988). Participants reported how often in the past week they experienced various symptoms, including feeling sad, like they couldn’t get going, and like everything was an effort (1 = Rarely or none of the time/less than 1 day to 4 = Most or all of the time/5–7 days). We summed across the items such that higher scores indicate more depressive symptoms (α = .84).

Loneliness was measured with the revised UCLA (University of California, Los Angeles) Loneliness Scale (Russell, 1996). Participants reported how often they had 10 feelings and thoughts during the past week, such as feeling that they lacked companionship or were left out (0 = Never to 3 = Always). We created a sum score in which higher scores represent more loneliness (α = .87).

Positive affect was measured using five items from the Mini Mood and Anxiety Symptom Questionnaire (Clark & Watson, 1991; Watson et al., 1995). Participants reported how much during the past week they felt (1) happy; (2) like they had a lot to look forward to; (3) really lively, “up”; (4) like they had a lot of energy; and (5) like they were having a lot of fun (0 = Not at all to 2 = Extremely). In the original scale, these items are reverse scored to create a measure of anhedonic depression or a lack of positive emotion. Following past work (Kendall et al., 2016), we retained the positive valence to assess positive affect. We created a sum score in which higher scores indicate more positive affect (α = 0.79).

Predictors

To assess care equality, participants evaluated the level of assistance they provided to their parent with ADRD in comparison to their sibling who also participated in the study. They then indicated whether they provided more help, their sibling provided more, or if both provided an equal amount of assistance. We dummy coded responses into two inequality constructs (i.e., under-contributing, in which the participant provided more care than their sibling, and over-contributing, in which the sibling provided more care than the participant), using equal care provision as the reference category.

Mediators

Caregiver burden was measured with the 4-item Zarit Burden Interview screening version combined with one item from the full scale (Bédard et al., 2001; Zarit et al., 1985). Participants reported how often they felt that care impeded their lives, such as feeling like they do not have enough time for themselves because of the time they spend with their parent or feeling stressed caring for their parent and trying to meet other responsibilities such as work or family (0 = Never to 4 = Nearly all of the time). We used mean scores of these five items in which higher scores indicate more caregiver burden (α = .92).

Social support was measured with the 10-item short form of the Social Provisions Scale that taps perceived emotional support from family members, friends, colleagues, community members, and others (Cutrona & Russell, 1987). Example items include “There are people I can depend on to help me if I really need it” and “I have relationships where my competence and skill are recognized” (1 = Strongly disagree to 4 = Strongly agree). We averaged across items to create a scale in which higher scores represent more social support (α = .87).

Covariates

We controlled for age, gender (0 = men, 1 = women), education (0 = no college degree, 1 = college degree or higher), marital status (0 = partnered, 1 = unpartnered), employment status (0 = not employed, 1 = employed), ethnicity (0 = non-Hispanic, 1 = Hispanic), race (0 = White, 1 = race other than White), and whether participants coresided with their parent with ADRD (0 = no, 1 = yes). We also accounted for several variables related to the parent with ADRD: parent’s age, gender (0 = men, 1 = women), and marital status (0 = partnered, 1 = unpartnered). Additionally, covariates included a measure of the parent’s dementia symptoms via participant report. Participants completed 22 items from the Revised Memory and Behavior Problems Checklist indicating whether their parent displayed a variety of symptoms in the past week (0 = no, 1 = yes; Johnson et al., 2001; Teri et al., 1992). The scale assesses depression (e.g., appearing sad or depressed), disruption (e.g., destroying property), and memory problems (e.g., asking the same question over and over). We summed responses to create an index in which higher scores represent more dementia symptoms (α = .79). Finally, we accounted for two variables related to the family context: the total number of siblings in the family and the proportion of sisters among these siblings, as gender shapes informal caregiving (Rurka et al., 2023; Vergauwen & Mortelmans, 2021).

Analyses

Analyses were computed in Mplus Version 8.11 (Muthén & Muthén, 1998–2017). First, we analyzed sample descriptives, including within-family differences regarding siblings’ reports of care (in)equality. Then, we tested direct effects from care equality to depressive symptoms, loneliness, and positive affect using regression with cluster robust standard errors to account for the nested nature of the sample (i.e., multiple siblings within families). Finally, we estimated mediation models from care equality to each outcome via caregiver burden and social support. We analyzed both mediators simultaneously with each outcome in separate models, for a total of three mediation models. We accounted for clustering using the CLUSTER command, COMPLEX option of the ANALYSIS command, and maximum likelihood estimation with robust standard errors (MLR). Bootstrap draws are not available with the COMPLEX option or with clustered data (Muthén & Muthén, 1998–2017). Acceptable model fit was evaluated using chi-square tests, the root mean square error of approximation (RMSEA; <.06), the standardized root mean square residual (SRMR; <.08), the comparative fit index (CFI; >.90), and the Tucker-Lewis index (TLI; >.90; Brown, 2015). Full information maximum likelihood addressed minimal missing observations. Non-significant correlations between covariates were constrained to zero for parsimony.

Results

Within-family descriptives revealed that most siblings’ (76%) perceptions of the division of parental care were aligned. Specifically, in 18% of families, both siblings reported equal care provision; in 58% of families, siblings reported unequal care and agreed on which sibling provided more. Disagreement about care provision was usually the result of one sibling reporting equal care and the other reporting that either their sibling provided more care (12%) or that they themselves provided more care (7%). Just 2% of families involved participants who both reported that they provided more care than their sibling.

Care Equality and Depressive Symptoms

Regression results for care equality and depressive symptoms are presented in Table 2. Adult child caregivers who perceived that they were contributing more to parental care than their sibling reported greater depressive symptoms than participants who reported equal care (b = 2.17, 95% CI [0.45, 3.88], p = .01). Perceiving that one’s sibling provided more care was not directly related to depressive symptoms (b = 1.08, 95% CI [−0.42, 2.59], p = .16).

Table 2.

Regression Results for Depressive Symptoms

Variable	Depressive symptoms
	b	95% CI for b		SE	p
	b	LL	UL	SE	p
Intercept	6.97	−1.94	15.83	4.54	.13
Care equity
You care more	2.17	0.45	3.88	0.87	.01
Sibling cares more	1.08	−0.42	2.59	0.77	.16
Age	0.12	−0.05	0.28	0.08	.17
Gender	3.39	1. 54	5.24	0.94	< .001
Education	−0.47	−2.29	1.35	0.93	.61
Marital status	0.37	−1.07	1.81	0.74	.61
Employment	−0.29	−1.67	1.10	0.71	.69
Ethnicity	−0.49	−3.81	2.83	1.69	.77
Race	−0.40	−2.11	1.31	0.87	.65
Parent’s age	−0.16	−0.35	0.03	0.10	.11
Parent’s gender	0.08	−1.90	2.07	1.01	.94
Parent’s marital status	−1.06	−2.55	0.43	0.76	.16
Parent’s dementia symptoms	0.11	−0.07	0.28	0.09	.23
Coreside	−0.74	−2.60	1.13	0.95	.44
Total siblings	0.06	−0.31	0.42	0.19	.77
Proportion sisters	2.27	−0.77	5. 31	1.55	.14
R ²	.16

Note. N = 208. Wald test: χ² (16) = 51.66, p < .001. Bolded coefficients are statistically significant (p < .05). b = unstandardized regression coefficient; CI = confidence interval; LL = lower limit; UL = upper limit; SE = standard error.

The results of mediation analyses with depressive symptoms are shown in Figure 1(a). Indirect effects from care equality to depressive symptoms through caregiver burden were statistically significant both for reporting that one provides more care than one’s sibling (b = 1.37, 95% CI [0.65, 2.08], p < .001) and that one’s sibling provides more care (b = −0.68, 95% CI [−1.27, −0.09], p = .02). Compared with participants who perceived that parental care was shared equally, individuals who perceived that they helped more than their sibling reported greater caregiver burden, whereas those who reported that their sibling helped more reported lower caregiver burden. Caregiver burden was then positively associated with depressive symptoms. With caregiver burden in the model, there was no direct effect from perceiving that one helps more to depressive symptoms; the direct effect from a sibling helping more to depressive symptoms was statistically significant and positive (b = 1.28, 95% CI [0.20, 2.53], p = .046).

Figure 1.

(a) Paths from care equality to depressive symptoms via caregiver burden and social support. Fit statistics: CFI = .98, TLI = .99, RMSEA = .01 [.00, .04], SRMR = .06. (b) Paths from care equality to loneliness via caregiver burden and social support. Fit statistics: CFI = .98, TLI = .99, RMSEA = .02 [.00, .04], SRMR = .06. (c) Paths from care equality to positive affect via caregiver burden and social support. Fit statistics: CFI = .98, TLI = .99, RMSEA = .01 [.00, .04], SRMR = .06. Bolded paths indicate statistically significant indirect effects. *p < .05; **p < .01; ***p < .001

The indirect effects of social support between care equality and depressive symptoms were not statistically significant. Despite the statistically significant and negative path from social support to depressive symptoms, we did not detect indirect effects via social support, either from providing more care than a sibling (b = 0.50, 95% CI [−0.11, 1.10], p = .11) or reporting that one’s sibling provided more care (b = 0.17, 95% CI [−0.47, 0.82], p = .60), relative to equal care provision.

Care Equality and Loneliness

Although there were no statistically significant direct paths from care equality to loneliness (see Supplemental Table 2), mediation analyses revealed indirect effects. As presented in Figure 1(b), when participants perceived that they provided more care than their sibling, there was a significant indirect effect from care equality to loneliness through caregiver burden (b = 1.38, 95% CI [0.63, 2.13], p < .001). Likewise, the indirect effect from reporting that a sibling provided more care was statistically significant (b = −0.67, 95% CI [−1.25, −0.08], p = .03). When participants reported that they provided more care than their sibling, they also reported higher caregiver burden, whereas participants who perceived that their sibling provided more care reported lower levels of caregiver burden. In turn, caregiver burden was positively associated with loneliness. With caregiver burden in the model, there was no direct effect from care equality to loneliness.

However, social support did not appear to mediate associations from care equality to loneliness. Although social support was negatively associated with loneliness, no indirect effect via social support was detected, either from providing more care than a sibling (b = 0.95, 95% CI [−0.15, 2.05], p = .09) or reporting that one’s sibling provided more care (b = 0.35, 95% CI [−0.84, 1.53], p = .57).

Care Equality and Positive Affect

Care equality was not directly associated with positive affect in regression results (see Supplemental Table 2). Nevertheless, there were statistically significant indirect effects from care equality to positive affect through caregiver burden, both for perceiving that one helps more than one’s sibling (b = −0.57, 95% CI [−0.90, −0.24], p = .001) and for perceiving that one’s sibling helps more (b = 0.30, 95% CI [0.02, 0.58], p = .04), compared with equally distributed help. As shown in Figure 1(c), participants who reported helping more than their sibling also reported higher caregiver burden, whereas those who reported that their sibling helped more reported lower caregiver burden. In turn, caregiver burden was negatively associated with positive affect.

Social support did not mediate associations between care equality and positive affect. The indirect effects from providing more care than one’s sibling (b = −0.22, 95% CI [−0.47, 0.04], p = .10) and one’s sibling providing more care (b = −0.09, 95% CI [−0.34, 0.17], p = .52) were not statistically significant. As shown in Figure 1(c), social support was directly and positively associated with positive affect, but there were no direct effects from care equality to positive affect.

To test the robustness of our results, we re-estimated models after adding a variable indicative of primary caregiver status. Participants were asked “Who among you and your sibling/s is the one on whom your parent relied the most for help in the past year?” and approximately 40% of participants (n = 83) responded with their own name. We entered this as a dummy variable (1 = relied on me most; 0 = did not rely on me most) in the direct effects models and found that it did not explain additional variance (p’s ranged from .12 to .86) nor did it change the overall pattern of findings.

Discussion

Guided by the family stress process model, this study examined associations between perceptions of care equality and mental health among adult children caring for a parent with dementia, as well as whether caregiver burden and social support mediated these associations. Prior research has demonstrated associations between caregivers’ perceptions of equality in ADRD care provision and mental health; however, this previous work has focused on broad caregiving networks (Ashida et al., 2018). By contrast, in this work, we focused specifically on adult children’s perceptions of care equality with their siblings.

We hypothesized that adult children’s perceptions of (in)equality in care provision with their siblings would be associated with mental health outcomes. Our findings provided partial support; adult child caregivers who perceived that they were contributing more to parental care than their sibling reported greater depressive symptoms than participants who reported equal care. By contrast, there were no direct effects from care equality to loneliness or positive affect. These findings demonstrate the importance of taking a multidimensional approach that considers both the positive and negative aspects of care provision (Wolff et al., 2021).

In addition, we expected that caregiver burden and social support would mediate the associations between perceptions of care (in)equality and mental health outcomes. Our findings provided partial support for this expectation. Consistent with our hypotheses, over-contributing siblings reported greater caregiver burden, whereas under-contributing siblings reported less, relative to siblings who perceived that care was equally shared. In turn, burden was positively associated with depressive symptoms and loneliness and negatively associated with positive affect, even over and above the contributions of factors that traditionally contribute to caregiver outcomes, such as symptom severity and coresidence (Pearlin et al., 1990). Prior work suggests that family caregivers experience unequal distributions of care as distressing (Ashida et al., 2018; Kokorelias et al., 2021, 2022), and our findings extend this work by demonstrating that caregiver burden is a key mechanism through which these perceptions impact adult children’s mental health.

Contrary to our expectations, social support did not mediate any of the associations between care (in)equality and mental health outcomes. These null findings diverge from previous work showing that care distributions are associated with informal support (Cleary et al., 2022), but they are in line with evidence suggesting that social support may not be uniformly beneficial across all caregivers (Skoblow & Gilligan, 2025). It is possible that different results would have emerged with a care-specific measure of support rather than a general construct. However, Leggett et al. (2021) found that perceiving that one has family and friends to talk to was associated with positive aspects of care, whereas having others to help with the care itself was unrelated. Another possibility is that the mobilization of social support networks is more closely tied to the expression of need than the perceptions of care division, which may or may not be communicated to others (Dunkel-Schetter & Skokan, 1990). Finally, it is also plausible that care inequality elicits a stronger impact on caregiver burden than on social support because negative constructs are often more salient than positive ones (Baumeister et al., 2001).

It is also worth noting that we assessed care equality, or the perception of who contributes more, rather than care equity, or the perception that care distributions are fair, even if they are unequal. In qualitative research, some adult child ADRD caregivers described contributing more time and effort than their sibling(s), while nonetheless viewing this arrangement to be justified (Kokorelias et al., 2022). It may be that a sibling classified as under-contributing in our study provides less care due to career and family responsibilities, for instance, which the over-contributing sibling understands. Still, perceiving care arrangements as equitable does not negate their unequal division and corresponding demands. Our findings suggest that such inequality contributes to caregiver burden for both siblings and, in turn, to their mental health. Future work considering the simultaneous contributions of care equality and equity will be valuable in understanding how family care networks can best navigate the division of care tasks.

Future Directions

Our study suggests several directions for future research. First, this work is cross-sectional; extending these findings with longitudinal data would provide greater insight into the long-term implications of care inequality. Past work suggests that sibling involvement increases alongside a parent’s disease severity (Lin & Wolf, 2020), but it remains unknown whether unequal division of care might also motivate some siblings to opt out of caregiving, further exacerbating the strain placed on their siblings who remain involved.

Second, we were only able to include responses from up to three siblings from each family, yet families had an average of 3.67 total siblings (SD = 1.81), with as many as 12 in the sibship. We asked adult children to identify another sibling in their family who was also involved in care provision. As a result, adult children with more than one sibling were likely to recruit siblings with whom they were actively engaged in care provision. It is possible that participants view each sibling’s care contribution distinctly, and therefore it is necessary to consider how perceptions of equality in parental care across all siblings may impact adult children’s mental health. In general, the research on sibling relationships in adulthood is limited by aggregate reports or reports on a single target sibling (Gilligan et al., 2020). However, research has demonstrated variability in adult sibling ties within the family (Gilligan et al., 2020; Suitor et al., 2024), and specifically, other research has demonstrated inequality in parental care provision (Pillemer & Gilligan, 2018). Future studies should ask respondents to report on perceptions of each of their siblings’ care contributions to capture variability.

Third, future research would benefit from the consideration of care provision in diverse populations. This study consists of a predominately white sample, and it is important to consider care provision in other racial, ethnic and cultural groups, and potential differential associations within mental health. For example, in a study of 243 informal ADRD caregivers, Black and Hispanic participants reported more familism and social support than their White counterparts, as well as lower levels of caregiver burden and depressive symptoms (Falzarano et al., 2022). In other work with 339 Chinese Canadian family caregivers, stronger endorsements of filial piety buffered the association between caregiving stressors and caregiver burden (Lai, 2010). Further, similar to other research on ADRD caregivers (Shin & Habermann, 2022), this sample consisted mainly of women. Although adult daughters are more proactive in their parent’s ADRD care, sons also contribute, albeit often in less intensive or personal tasks (Cha & Ailshire, 2025; Kokorelias et al., 2022). Future research should consider the associations between equality in the division of care and mental health among daughters and sons. Finally, researchers should consider how these multiple identities intersect to influence adult children’s caregiving experiences (Liu et al., 2022).

Fourth, future research should examine (in)congruence in siblings’ perceptions of equality in caring for parents with dementia. Although most participants reported congruent perceptions of care equality among siblings, 24% indicated incongruence among our sample. While prior research has primarily examined incongruence within caregiver–care recipient dyads, findings suggest that discrepancies in caregiving experiences can negatively affect well-being (Miller et al., 2018; Moon et al., 2017). Accordingly, future studies should test whether similar patterns emerge among adult child caregivers as they navigate shared parental care responsibilities (Rurka et al., 2021).

Lastly, our study did not account for other caregivers, although their involvement may influence the allocation of care, perceptions of care equality, and the mental health of adult child caregivers. For example, although we included parents’ marital status as a covariate, the participation of a parent’s partner in caregiving should be considered when examining the association between adult children’s perceptions of care equality and their mental health, as partners and spouses are often identified as primary caregivers (Wolff et al., 2018). Prior research has also shown that the number of caregivers shapes caregiving experiences (Ashida et al., 2018). Thus, future studies should consider the roles of other potential caregivers when investigating caregiving among adult children.

Conclusion

Siblings may serve as both sources of stress and support during parental ADRD caregiving (Bagautdinova et al., 2023; Ngangana et al., 2016), particularly in relation to their perceptions of how care is divided (Lin & Wolf, 2020; Tolkacheva et al., 2011). Our findings indicate that when adult children perceive care to be equally distributed, they report better mental health outcomes and suggest caregiver burden as a key mediator in this link. These findings can be used to inform dementia caregiver programs. Family gerontologists have called for caregiver programs to incorporate family-level approaches (Jackson et al., 2025; Pillemer & Gilligan, 2018). Our findings indicate that improving perceptions of care equality among siblings is a promising family-level approach. In prior qualitative research, siblings emphasized the importance of shared goals and open communication to promote equitable care (Kokorelias et al., 2022). Therefore, interventions that incorporate interpersonal and communication skills across caregivers may reduce caregiver burden and adverse mental health outcomes among caregivers.

Supplemental Material

Supplemental Material - Sharing in Caring: Perceptions of (In)Equality and Mental Health Among Siblings Caring for a Parent With Dementia

Supplemental Material for Sharing in Caring: Perceptions of (In)Equality and Mental Health Among Siblings Caring for a Parent With Dementia by Megan Gilligan, Hanamori F. Skoblow, Jeenkyoung Lee, Destiny Ogle in Research on Aging.

Footnotes

ORCID iDs

Megan Gilligan

Hanamori F. Skoblow

Destiny Ogle

Ethical Considerations

This study was approved by the Institutional Review Boards at the University of Missouri and Iowa State University.

Consent to Participate

Participants provided the electronic equivalent of written informed consent before starting surveys.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research is supported by a grant from the National Institute of Aging (K01 AG061260-01), the Boston University Alzheimer’s Disease Research Center and BU CTE Center (NIH P30AG072978, U01NS086659, U54NS115266), the Wisconsin Alzheimer’s Disease Research Center (P30AG062715), and partially by the NIH/NIA funded Michigan Alzheimer’s Disease Center (P30AG053760 and P30AG072931).

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

Study materials are available upon reasonable request.*

Supplemental Material

Supplemental material for this article is available online.

Author Biographies

Megan Gilligan, Ph.D., is an Associate Professor of Human Development and Family Science and a member of the Center for Family Policy and Research at the University of Missouri. Her research focuses on family relationships and well-being, with particular interest in parent-child and sibling relationships in the middle and later years.

Hanamori F. Skoblow, Ph.D., is a Postdoctoral Fellow in the Center for Family Policy and Research at the University of Missouri. Her research examines social relationships and health in older adulthood, with a focus on the context of cognitive aging.

Jeenkyoung Lee, Ph.D., is a postdoctoral fellow at the Center for Family Policy and Research at University of Missouri. Her research examines family, relational, and individual factors intertwined with close relationships and their influence on adult health.

Destiny Ogle is a dual-title Ph.D. student in Sociology and Gerontology, and a member of the Center on Aging and the Life Course at Purdue University. Her research interests focus on intergenerational relations and well-being with a particular emphasis on grandparent-grandchild and sibling relations in adulthood.

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