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. Author manuscript; available in PMC: 2026 Apr 19.
Published in final edited form as: J Gerontol Nurs. 2025 Mar 31;51(6):17–21. doi: 10.3928/00989134-20250321-01

Adverse Childhood Experiences Reported by Spouses of Persons Living With Dementia and Their Association With Care-Related Strain

Kylee Deterding 1, Lyndsey Anderson 2, Allison Lindauer 3; Oregon Alzheimer’s Disease Research Center, STELLA Lab PI
PMCID: PMC13091038  NIHMSID: NIHMS2151202  PMID: 40152458

Abstract

Purpose:

The purpose of this study was to explore the association between adverse childhood experiences and care-related strain among spouses of a person living with dementia (PLWD).

Methods:

Data from spouses (n=30) of a PLWD were included in a cross-sectional analysis examining whether childhood adversity (ACE-10) was associated with reports of care-related strain (ZBI-12).

Results:

Care-related strain was moderate (x¯ = 17.00), and there was a significant difference between ZBI-12 scores reported by spouses with no ACEs (n=10, x¯=11.30) versus those with ≥1 ACE (n=18, x¯=20.17), p= 0.01, 95% CI (−15.37, −2.36). Multiple regression analysis indicated that there was a significant association between ACEs and ZBI-12 (p=0.006), even controlling for role captivity (p<0.001), another influential factor.

Conclusion:

Early childhood adversity may influence the degree of care-related strain appraised by spouses based on these preliminary results. Future research is needed to understand mechanisms and potential interventions for heightened appraisal of strain among caregivers with ACEs.

Introduction

The family caregiving role can be a stressful experience, particularly for spouses of a person living with dementia, who are usually cohabiting and are often the sole provider of care in the last years of life (Ornstein et al., 2019). The subjective negative appraisals (e.g. feeling overwhelmed, confined, or resentful) that arise from the demands of caregiving are often collectively referred to as care-related strain, or the conceptual equivalent, caregiver burden (the term strain will be used in this writing to describe this concept except when the measure Zarit Burden Interview is referenced) (Savundranayagam et al., 2011; Stuckey et al., 1996; Vitaliano et al., 1991; Zarit et al., 1980). Yet, not all spouse caregivers who provide this intensive dementia care experience a high level of strain.

Adverse Childhood Experiences (ACE) include abuses that are physical, verbal, or sexual, parental incarceration, substance abuse in the home, parental depression, parental divorce, or witnessing of domestic violence (Felitti et al., 1998). For each additional ACE reported, the odds increase for acute and chronic physical health conditions later in life (e.g. heart attacks and autoimmune diseases) (Kalmakis & Chandler, 2015; Monnat & Chandler, 2015) and mental health consequences (e.g. mood disorders and post-traumatic stress disorder) (Kalmakis & Chandler, 2015; Petruccelli et al., 2019). The link between ACEs and physical and mental health across the lifespan has in part, been explained by the formative influence of childhood trauma on stress reactivity (Del Giudice et al., 2011) and the lifelong impact it has on negative affect and psychological stress appraisals (Kong et al., 2021).

The Stress Process Model (SPM) (Aneshensel et al., 1995; Pearlin et al., 1990) provides a framework for explaining how the early life context can lead to greater stress proliferation among caregivers in later life. Caring and caregiving, first experienced in infancy, are the most primary components of social and familial relationships, and have profound lifelong impact on development into adulthood (Ulmer Yaniv et al., 2021). Providing care for an older family member or friend can also be a rich and rewarding part of many adult relationships. Yet, certain intense forms of caregiving, such as dementia, can transform the experience into one of great strain on the relationship and on the caregiver’s well-being (Haley et al., 2020). When caring and helping becomes unidirectional in a relationship, the Stress Process Model indicates that it may create distress in the caregiver, especially when the caregiver has limited resources and has experienced previous stress or trauma in a caregiving relationship (Pearlin et al., 1990).

The objective of this study was to examine the association between ACEs and care-related strain reported by spousal caregivers of persons living with dementia. Hypothesis: ACEs will be associated with significantly higher amounts of care-related strain.

Methods

Sample and Design

To assess the relationship between ACEs and care-related strain, a secondary analysis was completed on data from 30 dyads who were enrolled in the Oregon Center for Care Support Translational Research Advantaged by Integrating Technology (ORCASTRAIT; National Institute on Aging, P30AG024978). ORCASTRAIT is a NIA-Roybal-funded center designed to test technologically-enhanced assessments and intervention delivery methods to better understand and improve the health of older adults, including those with dementia and their caregivers.

Dyads (persons with dementia and their spouses) were recruited from the [X] area. For this analysis, it was only the spousal caregiver data for statistical analysis. To be included in the study, dyads had to cohabitate in a home that was larger than a studio apartment, have a computer with a broadband connection, and were comfortable using email. Persons with dementia had to be age 55 or older. Spouses had to be 18 or older and not have a dementia diagnosis. Potential participants were excluded if they had an unstable psychiatric or physical illness.

Consent was obtained via eConsent using Qualtrics – with the exception of two dyads who preferred paper consent. The study was approved by the [X] IRB, # 20236.

This secondary analysis used cross-sectional data collected from participant online surveys, which were completed at enrollment. Both the person with dementia and the spouse completed the surveys via secure links. Data was collected and stored securely using the REDCap database (Harris et al., 2019).

Measures

Demographic variables included were gender, age, education in years, Rural Urban Continuum of home zip code (RUCA) (U.S. Department of Agriculture, 2023).

Zarit Burden Inventory (ZBI-12) measures aspects of care-related strain or burden appraised by caregivers (Ballesteros et al., 2012). The 12-item scale is Likert-type with responses ranging from 0 (never) to 4 (nearly always) for a total scale score range of 0 to 48 (Higginson et al., 2010). Higher scores are reflective of increased burden or strain experienced by spouses from provision of care (Bedard et al., 2001).

Adverse Childhood Experiences (ACEs - 10) explores potentially traumatic events (related to abuse, neglect, and household dysfunction) during years 0-17 in age (Felitti et al., 1998). The scale includes 10 items with yes/no responses. ACEs are scored by adding the total number of yes responses. In our study, the total score was dichotomized for analysis with zero as a category and one to nine as the other.

Role Captivity is a type of strain in which caregivers enter into the role being compelled to engage in caregiving activities without a strong willingness or desire to perform them (Pearlin et al., 1990). Role Captivity was assessed by the three original (Pearlin et al., 1990) items: Do you wish you were free to lead a life of your own? Do you feel trapped by your relative's illness? Do you wish you could just run away? The response scale for these items was 1 to 5, and items were averaged with a lower total score indicating less role captivity.

Analysis

Stata v17 was used to analyze the data (Statacorp, 2020). Descriptive statistics were used to analyze demographic data. Independent samples t-test was used to compare ZBI of dichotomized caregiver ACE samples. Pearson’s correlation was initially reviewed to determine correlation and verify there was no multicollinearity. Multiple linear regression was used to predict ZBI-12 for caregivers with ACEs (ACE-10), adjusting for role captivity (an aspect of caregiver stress process). Criteria for significance was set at p <0.05.

Results

The sample of spouse caregivers was majority female (66.67%), mean age of 71.8 years (SD 16.8), whereas the participants with dementia were majority male (66.67%), mean age 74.8 (SD 18.6) years old. Participants with dementia and their spouses resided in urban settings, and had, on average, a college education (see Table 1 for sample characteristics).

Table 1.

Sample Characteristics

Caregivers with ACE Caregivers without ACE No ACE reported a
# Female 13 5 2
# Male 5 5 0
RUCA score b
1: Urban 15 8
2: Urban commute 3 2
4: Small town 0 1
Years of Schooling
Mean 16.39 17.5
SD 2.15 2.4
Range 12-20 14-22
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Note.N=30

a

Caregivers with full data but no ACEs reported (n=2).

b

Rural-Urban Commuting Area codes (U.S.Department of Agriculture, 2023).

The average caregiver ZBI-12 score was 17 (sample range 2-33 on 48-point scale), indicating caregivers experience significant strain (clinical cutoff ZBI = 13). The majority of spouse caregivers (60%) reported at least one ACE. The average number of ACEs in the sample was 1.68 (SD 1.83). Independent samples t-test showed a significant difference (p=0.01) in strain between caregivers with no ACEs (n=10, mean 20.17, SD 8.30) versus those with one or more ACEs (n=18, mean 11.30, SD 7.50).

Multiple regression analysis indicated that there was a significant association between ACEs and ZBI, controlling for role captivity, with a high capture of ZBI variance (see Table 2). Role captivity also showed moderate correlation with caregiver burden, without multicollinearity (see Table 3).

Table 2.

Associations with ZBI a-12 Score Using Multiple Regression

Variable β SE t P 95% CI
ACEs (dichotomized) 7.57 2.55 2.97 0.006 [2.32, 12.81]
Role Captivity Total 1.69 0.43 3.98 0.001 [0.82, 2.57]
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Note. N=28; CI = confidence interval; R-squared = 0.53; Adjusted R-squared 0.49.

a

ZBI: Zarit Burden Inventory

Table 3.

Correlation Table of Study Variables

Variable 1 2 3 4 5
1. ZBI a Total -
2. ACE Dichotomized .481* -
3. Role Captivity Total .610* .128 -
4. Caregiver Age − .179 − .229 −.311 -
5. Years of Schooling − .370* − .280 −.027 − .016 -
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a

ZBI: Zarit Burden Inventory

*

p < .05

Discussion

In this study of spousal dementia care dyads, we sought to examine the association between adverse life experiences as children (ACEs), and current appraisals of strain from providing care. This secondary analysis of data from a sample of 30 spouse caregivers who were cohabiting with their spouse with cognitive impairment revealed that care-related strain was significantly higher among the group of spouse caregivers who reported 1 or more ACEs. Further, when controlling for role captivity, which is known to negatively impact appraisals of the caregiving experience (Aneshensel et al., 1995), both role captivity and ACEs were significantly associated with greater care-related strain. These results highlight the potential importance of a fundamental life-course risk factor (ACEs) that has largely been unstudied among this growing segment of the older adult population (spouse caregivers of persons living with dementia). There are implications for better understanding the stress process of caregiving, and for addressing the heightened potential for poor mental health outcomes among this group of caregivers.

Consistent with the broader literature and populations, in this study, a history of adverse childhood experiences intensifies the appraisal of stress and strain in adulthood (Petrucelli et al., 2019; Kong et al., 2021). Spouse caregivers who reported one or more ACEs appraised care-related strain as almost twice as high, on average, as spouse caregivers who reported no ACEs. This finding is congruent with the Stress Process Model, in which other background factors (e.g. socioeconomic status) in the caregiver’s life provide meaningful context that contributes to the proliferation of subjective stressors, such as care-related strain (Pearlin et al., 1990).

The spousal status of a caregiver, which is a more intense and often intimate form of caregiving (Zhang & Bennett, 2024), is a context in which a history of ACEs may further complicate the caregiving experience and could also heighten the sense of role captivity. Role captivity, seen as a lack of autonomy or freedom of choice in the caregiving role, may be influenced by marriage vows or the concept of spousal duty. In this study, there was not a strong correlation between ACEs and role captivity, however, future studies would need to investigate how adversity experienced during the vulnerable time of childhood development and formation of attachment with a caregiver could influence the perception of later delivering care to an individual within an intimate, cohabitating status. Further exploration of the impacts that ACEs carry through into adulthood relationships, particularly as a spouse providing care, is important to understand the context of spousal caregiving. Understanding and destigmatized support for family caregivers is imperative as our overall population ages and in turn, the proportion of peoples at risk of dementia may also continue to grow. Replicating this type of study on offspring caregivers, as this proportion of peoples grows, will also offer great value.

Limitations

The small sample offers preliminary results, limiting the ability to generalize from this study as well as limiting the stability of the relationships identified. The experience of caregiving for persons with dementia is a long-term experience. The stability of strain experience is unknown for a caregiver experience. Therefore, this cross-sectional, descriptive study may reflect differently during phases of the caregiving experience. ACEs are temporally distant from the older adult period, therefore the correlation identified has limited ability to draw future causal conclusions. Due to the small sample size, each association presented warrants future research with larger samples.

Conclusion

In this study we found early childhood adversity may influence the degree of caregiver strain experienced by spouses of persons living with dementia. In addition, there was a highly significant association between role captivity and strain experience. Further research is needed to understand how to mitigate role captivity and other potential disrupters of the stress process among spouse caregivers of persons with dementia.

Contributor Information

Kylee Deterding, Oregon Health & Science University, School of Nursing.

Lyndsey Anderson, Vanderbilt University, School of Nursing.

Allison Lindauer, Oregon Health & Science University, Division of Aging, Alzheimer’s and Related Disorders.

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