Adult Child Caregivers Research Articles

LINKING DEMENTIA CAREGIVING EXPERIENCES WITH EXPECTATIONS OF FUTURE HEALTH CARE NAVIGATION

Abstract Caregivers of people living with advanced dementia are often exposed to the complexities of healthcare coordination and decision-making over the disease trajectory. These observations can shape former caregivers’ expectations of healthcare available to them in the future, particularly approaching their end-of-life. We conducted a reflexive thematic analysis to characterize adult-child caregivers’ observations about healthcare provision for people with dementia, as well as exploring how and whether these former caregivers related these observations to their own end-of-life care expectations. Analysis of semi-structured interviews from 32 bereaved caregivers generated two themes describing how caregiving influenced caregivers’ understanding of a) the need for medical advocacy and b) the appropriateness of medical services at the end-of-life. For some former caregivers, having engaged in medical advocacy for their parents served to demystify the process of communicating with medical professionals about goals of care and the relative utility of medical interventions, fostering feelings of preparedness for self-advocacy around receiving what they judge to be appropriate care in the future. Some participants linked their observations to changes in their perceptions of hospice care, with the majority of this group expressing an increased appreciation for its role in enhancing comfort and reducing care fragmentation. Others indicated that caregiving reinforced their existing appraisal of hospice as appropriate for improving end-of-life experiences. This work indicates that former dementia caregivers’ healthcare observations shape their broader understanding of end-of-life opportunities and limitations within current medical systems, and influence their perceived ability to navigate similar contexts in the future.

LIFE COURSE APPROACH TO CAREGIVING FOR AGING PARENTS: THE ROLE OF ADVERSE CHILDHOOD EXPERIENCES

Abstract The high strain and burden of caring for aging parents have been well-documented. Few but growing studies have found the effects of earlier distal factors, such as childhood maltreatment, on negative mental health for caregivers of aging parents. Taking a life course approach to intergenerational caregiving, this study examined the long-term impact of adverse childhood experiences (ACEs) on adult caregivers of aging parents. Using data from the Midlife in the United States (MIDUS), we analyzed a sample of 412 caregivers of aging mothers. We conducted a series of latent class analyses (LCA) for a holistic assessment of the patterns of ACEs among the caregivers. Respondents’ exposure to ACEs available in MIDUS included parental neglect, emotional abuse, physical abuse, sexual assault (perpetrator not specified), living with a household member with a substance use issue, and parental divorce/separation/death during childhood. Among the caregivers of mothers, we identified a five-latent-class structure: No/low ACEs (60%), Neglect and Household Challenges (12%), Paternal Abuse (5%), Parental Physical Abuse (16%), and Substantial ACEs (7%). The respondent’s education was significantly associated with latent class membership. Caregivers in the Substantial ACEs class showed consistently worse physical and mental health than those in the No/low ACEs class. The current study contributes to raising awareness of adult-child caregivers who experienced childhood trauma, who may deal with accumulated disadvantages from childhood adversities, their potential correlates, and current caregiving. Further investigations will help find ways to reduce ACEs’ impact in order to promote the health of these caregivers and strengthen their well-being.

Perceived Social Support, Intolerance of Uncertainty, and War-Related Stress: Unraveling the Nexus with Treatment Burden in Adult-Child Caregivers During War

ABSTRACT Adult-child caregivers encounter various challenges due to their array of roles and tasks, often leading to a substantial sense of treatment burden. While previous research has explored factors contributing to treatment burden, much of it has centered on routine periods, leaving a gap in the understanding of this issue during crisis situations characterized by heightened stress and uncertainty. Therefore, this study aims to address this gap by investigating the mediating role of intolerance of uncertainty and war-related stress in the relationship between perceived social support and treatment burden among adult-child caregivers during the Israel-Hamas war. The study involved Israeli adult-child caregivers who completed a structured questionnaire distributed online. The findings showed that perceived social support was negatively associated with intolerance of uncertainty, which, in turn, was positively associated with war-related stress. Consequently, a positive correlation was observed between war-related stress and treatment burden. Perceived social support was found to be negatively associated with war-related stress. These findings underscore the significance of social support in reducing treatment burden, particularly during periods of heightened stress such as wartime. Understanding the interplay between these factors can inform the development of effective interventions aimed at alleviating the burden experienced by adult-child caregivers.

'You want to shield your kids': Patients' and their adult-children's serious illness conversations.

Timely and transparent serious illness conversations (SIC) between family caregivers and patients facilitate high-quality end-of-life care and patients' and family caregivers' mental wellbeing, but frequently do not occur, happen too late, or are incomplete. While social relations and roles shape communication, few studies explore their influence on patient-caregiver SICs. Investigate how the parent-child relation and roles shape SICs between cancer patients and their adult-child caregivers (ACC), the largest caregiver population. Qualitative interviews were conducted with 47 participants: advanced cancer patients (n=16), their ACCs (n=23), and bereaved ACCs (n=8). Interviews were transcribed and analyzed using a theoretical thematic approach. Respondents' experiences with SICs centered on three key themes: (1) the parent role could hinder SICs in an attempt to protect their ACC while expectations to prepare one's child promoted SICs; (2) adult-children's busy life phase (e.g., marriage, children, career) hampered their prognostic awareness and added emotional weight to parent-child SICs; and (3) the child role dictated expectations for SICs and amplified distress when ACCs felt they were expected to engage in SICs in ways concordant with another role (e.g., patient's spouse or nurse). The fundamental rebalancing of the parent-child relation and roles when an adult-child cares for their parent creates unique challenges for patients and their ACC to discuss and plan for end-of-life. To encourage timely, effective SICs, clinicians and caregiver services in and outside the clinic need awareness and guidance on how goals of care conversations must incorporate family caregivers' and patients' familial role expectations.

Certified Child Life Specialists in Hospice and Palliative Care Organizations: A State of the Profession.

Certified Child Life Specialists (CCLSs) provide developmentally appropriate psychosocial care to children to promote positive coping. However, little is known about the current professional landscape and opportunities for professional growth, especially in hospice and palliative care. To conduct a needs assessment among CCLS and examine the role in hospice and palliative care. CCLSs were surveyed on their experience and needs in providing care in hospice and palliative care organizations. The online survey contained questions about demographics and work environment. The survey included multiple choice, yes/no, and open-ended questions. Descriptive statistics were generated from the survey items and comments/open-ended questions were coded and assessed for themes. Among the 191 respondents, most were females (96.3%), under 40 years of age (63.8%), Caucasian (87.4%), and non-Hispanic (95.3%) with under 12 years of full-time work experience (57.0%). CCLSs commonly worked in urban/suburban (67.5%) pediatric programs (62.3%) with clients ranging from perinatal (33.5%) to adult caregivers of children (60.2%). Themes from the open-ended questions were: (a) role clarification, (b) staffing, (c) funding, (d) training/education, (e) professionality, and (f) self-care. Key insights into the profession, along with challenges and opportunities of working within the hospice and palliative care setting were identified. The findings highlighted the unique need for professional development among CCLSs.

Changes in care provision to older parents during COVID-19 and the well-being of adult children: The moderating roles of the child-parent relationship and pandemic-related measures

Objective: The study addresses the associations between changes in care provision to older parents since the pandemic and worsened depression and anxiety in adult children. It also explores whether pandemic-related control measures and child-parent relationships moderated these associations. Background: Changes in informal care during the pandemic, such as increased or decreased caregiving frequency, may have affected caregivers’ psychological well-being. Limited research exists on how stressors and resources shape the well-being of adult children caregivers. Method: Data from 740 respondents in the first SHARE Corona Survey (SCS) who provided care for their parents during the pandemic were analyzed. Changes in depression and anxiety were assessed using data from SCS and pre-pandemic Wave. Logistic regression analyses were conducted, with added interactions between the moderators - pandemic measures and child-parent relationship characteristics - and changes in care frequency. Results: Increased caregiving frequency during the pandemic was associated with worsened depression. Stricter pandemic measures intensified this effect but also reduced the likelihood of anxiety for those who provided care less often. A higher quality of relationship with the mother in childhood was marginally associated with lower depression among those increasing caregiving but worsened depression for those decreasing it. Conclusion: To address post-pandemic caregiving challenges, efforts should focus on reducing caregiver stress and considering the enduring influence of early child-parent relationships.

Systematic review of burden&quality of life in caregivers of children with schizophrenia (SyREN)

Abstract Background Schizophrenia is a chronic, disabling disorder that affects 23.6 million people worldwide, with patients often needing extensive assistance and care. Main caregivers are frequently family members who may present a reduced quality of life (QoL) due to the high-level burden of care. Literature mostly focuses on the burden caused by other mental disorders or by schizophrenia in both the adult and child population. We aim to assess the burden and QoL in caregivers of children and adolescents with schizophrenia. Methods We conducted a Systematic Review of articles published between 2013 and 2023 on MEDLINE, Scopus, Web of Science, APA PsycARTICLES, CINAHL. We included studies in which a validated instrument was used to measure the burden of caregiving and QoL for adult caregivers of children and adolescent schizophrenic patients. The results were reported following the PRISMA guidelines. Results We identified 1388 studies. We removed 610 duplicates. After screening 788 studies on title and abstract and 52 for full-text, we included one cross-sectional study in China based on the STROBE Checklist. Significant correlations between burden of care and schizophrenia severity, children’s age, period of care, education, sex, residence, and income were reported. Additionally, we screened 7 qualitative studies. Social stigma and struggle were the most frequently reported feelings, and financial burden was the most common external factor associated with a worse quality of life. Conclusions This review revealed a significant research gap in this field. This lack of focused research underscores the urgent need for targeted investigations into the experiences of caregivers of children and adolescents with schizophrenia. Addressing these knowledge gaps will improve support systems and interventions tailored to the unique needs of this population, such as disease-specific advisory, mental health services, social and financial support, and self-help groups. Key messages • We identified a research gap for burden and quality of life in informal caregivers of children with schizophrenia. Education, sex and income of caregivers relate to the burden of care. • Further research is needed to develop strategies to improve support systems and interventions tailored to the unique needs of this population.

Does Social Support Alleviate the Caregiving Burden of Adult Children? Evidence from Chinese Long-Term Care Insurance Pilot Program

ABSTRACT In China, and many other developed nations, public long-term care insurance (LTCI) is a commonly adopted approach to meet long-term care needs, but its impact on the burden of family caregivers remains uncertain. This study investigated whether a parent having LTCI alleviates the caregiver burden for the adult child caregiver. Data derived from the 2011, 2013, and 2018 China Health and Retirement Longitudinal Study (N = 4595 adult child caregivers). Guided by the stress-appraisal model, Difference-in-Difference (DID) methods were used to investigate the spillover effects of LTCI on caregiver stressors and burden. The results show that having public LTCI in place in a location is associated with reduced caregiver burden among adult child caregivers through its effects on secondary stressors (wealth, health, and sleep problems) and hours of caregiving. Findings suggest that the LTCI is an effective form of social support for aiding family caregivers and alleviating their burden.

Assessing the Burden of Atopic Dermatitis in Portugal through Patient-Centered Experiences

Introduction: Adult patients and caregivers of children with atopic dermatitis experience high physical, mental, and financial burden in Portugal. We outline the experience of atopic dermatitis management and how the current medical care model impacts patient-centered concerns such as financial burden, quality of life, disease burden, and treatment satisfaction. Methods: We conducted a survey of 419 Portuguese adults and caregivers of children to capture the experience of managing atopic dermatitis in Portugal. Results: Respondents reported average satisfaction with treatment, with a mean satisfaction rating of 3.15/5.00 (SD = 0.77). Adults reported slightly better control of atopic dermatitis symptoms (mean = 56.6) than pediatric patients (mean = 55.9, caregiver reported). Nearly 34% of adults and 39% of caregivers of children and adolescents indicated that their healthcare providers asked about their priorities at the last medical visit. Additionally, only 40% of adult patients and 32% of caregivers reported that patient training was offered to them. Respondents seeing dermatologists reported higher satisfaction than those seeing other healthcare providers (p = 0.01) but there were no differences in long-term control of symptoms by provider type (p = 0.85) when controlling for severity. Portuguese adult patients scored 0.86/1.00 on the EQ-5D (where 0 = death and 1 = perfect health). Financial concern was high as nearly 80% of patients and caregivers reported using savings, borrowing money, and/or reducing spending to cover atopic dermatitis-related costs.Conclusion: Portuguese patients with atopic dermatitis and caregivers experience financial burden, lower health-related quality of life, higher disease burden, and treatment satisfaction issues with their current medical care. These factors often deteriorate as the disease’s severity increases. Providers, researchers and policymakers should focus on better addressing patient-centered concerns for individuals suffering from atopic dermatitis to improve care and health outcomes.

Gambaran Stres pada Adult-Child Caregiver dalam Merawat Orang Tua dengan Penyakit Pikun

There are currently more than 55 million people suffering from senile worldwide, more than 60% of whom are dominated by middle and low income countries. Every year, 10 million cases of senile occur. Senile is caused by various diseases that attack the brain. Alzheimer's disease is one of the most common forms of this disease and can cause 60-70% of cases in elderly people with senile. Caring for a parent with senile has the potential to be very stressful. The aim of this research is to determine the description (aspects, levels, & influencing factors) of stress in adult-child caregivers in caring for parents with senile. The method used in this research is qualitative with a phenomenological type. The subjects in this study were 3 people who played the role of Adult-Child Caregiver for a period of 4 years or more. The data collection technique uses the interview method. The data analysis technique uses the Miles and Hubberman model. The data credibility techniques used are source triangulation and member checking. The results of this research show that there is a description of the stress experienced by the subject with both biological and psychological aspects. 2 of the 3 subjects studied had Very Severe Stress levels with the influence of economic, family and environmental factors. 1 in 3 subjects have symptoms of excessive stress and have experienced it for a very long time. The results of this research can be a suggestion for other adult-child caregivers to receive training to increase their skills in caring for elderly parents.

Caregiving-Related Characteristics and Dental Care Utilization in Informal Caregivers of Persons With Dementia: Is There a Gender Difference?

Dental care utilization is an important, yet understudied aspect of healthcare in informal caregivers of persons with dementia. This study examined how caregiving-related characteristics are associated with dental care utilization among U.S. informal caregivers of persons with dementia and further examined gender differences. Pooled data came from the Behavioral Risk Factor Surveillance System in 2016, 2018, 2020, and 2022. A nationally representative sample of informal caregivers (n = 3,909) was included. Dental care utilization was "yes" versus "no" within the past year. Caregiving-related characteristics included caregiver role, intensity of care, duration of care, and type of care. Logistic regressions and subgroup analyses were conducted. In total sample, compared to adult child caregivers, spousal caregivers were 28% less likely to visit a dentist (odds ratio [OR] = 0.72; 95% confidence interval [CI] = 0.56, 0.94). Caregivers who provided care for more than 20hrper week were 18% less likely to visit a dentist (OR = 0.82; 95% CI = 0.69, 0.98). In subgroup analyses, intensity of care was a barrier to dental care utilization for female caregivers (OR = 0.78; 95% CI = 0.62, 0.98), whereas caregiver role such as spousal caregiver (OR = 0.59; 95% CI = 0.39, 0.89) or other relative caregiver (OR = 0.70; 95% CI = 0.50, 0.99) was a barrier to dental care utilization for male caregivers. The findings highlight the importance of caregiving-related characteristics in dental care utilization and suggest gender-tailored interventions.

Family Caregivers of Cancer Patients: Burdens and Support Preferences of Partner, Parent and Adult-Child Caregivers.

The aim of this study is to (1) identify similarities and differences in psychosocial burdens and support needs experienced by parent, partner and adult-child caregivers and (2) identify support needs of family caregivers regarding peer support programs. Semi-structured interviews (n=30) were conducted with family caregivers of cancer patients. Interviews were transcribed and analyzed by inductive content analysis to identify themes. Ten categories of burden were identified for all three groups of caregivers. Partners emphasized the time burden through caregiving, parents and adult-child caregivers accentuated the emotional burden. All caregivers wished for peer-to-peer exchange which will provide the feeling not to be alone, to share emotions and to prepare for what will come next. Preferences for matching with peers with similar prognosis for their sick relative and similar living conditions were found. Partner, parent and adult-child caregivers describe similar burdens of caregiving. They wish for peer support programs that allow them to share their experiences with persons who understand their situation. Therefore, caregivers desire a good match with peers to enhance the positive outcome of peer exchange.

Caring for the child with a tracheostomy through the eyes of their caregiver: A photovoice study

PurposeThis qualitative descriptive study aimed to explore the daily experiences of caregivers of children with medical complexity with a tracheostomy at home. MethodsThis study used photovoice, a participatory action research methodology. Adult English-speaking caregivers of children with a tracheostomy, living in Texas, with access to a smartphone were recruited. Photographs taken by participants and an interview guide were used to guide semi-structured interviews with caregivers. ResultsEight participants were recruited. After analyzing photographs and caregiver interviews, four main themes were identified: role transition, daily challenges, finding support, and thriving in the new normal. ConclusionsCaregivers take on multiple roles, including providing medical care, advocating for their children, and educating others. While facing emotional challenges such as guilt, fear, and exhaustion, caregivers rely on external support systems, emphasizing the need for nurses and healthcare providers to provide comprehensive support and improve the accessibility of home nursing services. Practice implicationsThe findings of this study can inform nurse-led interventions and advocacy efforts aimed at supporting marginalized children with medical complexity with a tracheostomy and their families. These efforts may include enhancing communication and collaboration between families, healthcare workers, and the public, providing comprehensive, proactive support for caregivers, and improving access to home nursing services.

The relationship between filial values and preparedness in adult -child caregivers of patients with chronic heart failure: A cross-sectional study

ObjectivesTo explore the relationship between filial values (responsibility, reciprocity, and obligation) and caregiving preparedness in adult child carers of patients with chronic heart failure (CHF). MethodsA total of 339 adult child caregivers of CHF patients were recruited from six hospitals in China. Self-report questionnaires were used to measure caregivers’ filial values and their caregiving preparedness. Descriptive analysis, Spearman's correlation analysis, and hierarchical regression analysis were performed. The study adhered to the STROBE guidelines. ResultsFilial values were positively correlated with caregiving preparedness. Hierarchical regression analysis revealed a positive relationship between the combined variables of care and respect with caregiver preparedness, jointly explaining 7.9 % of the variance. ConclusionsFilial values promote caregiver preparedness, broadening the applicability of the Caregiver Empowerment Model.

Differential Effects of an Integrated Community-Based End-Of-Life Support Team (ICEST) Model for Terminally Ill Older Adults on Spousal and Adult-Children Caregivers.

Backgrounds: Family caregivers (FCs) play an essential role in delivering home-based end-of-life care. However, little is known about FCs'' experiences when undertaking this role. The integrated community end-of-life support team (ICEST) is a needs-driven, home-based, family-centered care model in Hong Kong. We evaluated its effects on FCs and compared outcomes for spouses and adult children. Method: A multicenter pre-post-test study was conducted. Eligible participants were primary FCs of terminally ill older adults (age ≥ 60) who had a life expectancy of ≤12months. Baseline (T0) and three-month post-intervention (T1) outcome measures included FCs'' caregiving strain, psychological distress, perceived external support, intimate relationships, and communications regarding care planning. Results: A sample of 628 FCs were enrolled at T0, and 40.0% completed the T1 assessments. The ICEST model was effective in reducing caregiving strain, depression, and worries about patients, whilst there were improvements in agreement about care planning with patients, and perceived external supports. At T0, spouses held more negative perceptions of caregiving and faced fewer adjustment demands than adult children. Compared with spouses, adult children were more intimate with patients. Between T0 and T1, spouses experienced a greater reduction in worries about patients, than adult children. Conclusions: The ICEST model contributed to better outcomes, individually and relationally, for FCs, regardless of relationship type. Spouses and adult children faced different challenges while delivering home-based end-of-life care. Effective interventions should modify the negative perceptions of caregiving in spousal caregivers and enable adult children to deal with multiple tasks and complex expectations.

Caring for a Parent With a Blood Cancer: Sibling Communication Challenges and Psychosocial Outcomes

This exploratory survey study used quantitative and qualitative analyses to (a) identify challenges communicating with siblings that adult child caregivers of a parent with a blood cancer encounter and (b) examine how these challenges are related to caregivers’ burden, social support, family openness, and clinical communication quality. A total of 95 caregivers with siblings participated in an online survey. We conducted a qualitative content analysis on an open-ended response to understand their challenges and statistical analyses on responses to validated scales to examine associations between the challenges and psychosocial/communication outcomes. Caregivers encountered nine challenges communicating with siblings (lack of agreement and competing obligations). Caregivers’ family openness, social support, and caregiver burden differed based on several challenges. The number of siblings was linked to poorer outcomes (burden). Adult child caregivers face sibling-related challenges, which may inhibit their communication and well-being.

Wellness in the modulator era: An observational study of the impact of CFTR modulator therapy on the well-being of people with cystic fibrosis

BackgroundPeople with cystic fibrosis (PwCF) have experienced substantial improvements in health following use of cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies. However, less is known about how modulator therapies impact well-being. MethodsWe used a cross-sectional observational study to identify relationships between CFTR modulator therapies, health-related quality of life (HRQoL), and well-being. Adult PwCF and caregivers of children with CF completed the Wellness in the Modulator Era (Well-ME) survey between June 22 and July 31, 2022. HRQoL was measured with PROMIS Global 10/Global 7 + 2 Parent Proxy. We used a mixed methods analysis to compare experiences and concerns of PwCF who currently (n = 665), no longer (n = 51), or never (n = 184) took modulator therapy. ResultsAdult PwCF taking a modulator (n = 416) reported better PROMIS global physical health than those who no longer (n = 37) or never took a modulator (n = 94) and better PROMIS global mental health than those who never took a modulator. Caregiver-reported HRQoL was similar across children with CF who currently, no longer, or never took a modulator. PwCF taking a modulator reported larger improvements in physical health, quality of life, social well-being, and treatment burden than those who no longer or never took a modulator. Nearly one-quarter (23 %) of PwCF taking modulator therapy reported worsening of mental well-being. ConclusionsThis study expands our knowledge of well-being among PwCF in the CFTR modulator era as reported by patients and parents. Findings lay the groundwork for establishing future research priorities, policy efforts, and communications in areas that improve well-being for PwCF.

Impact of caregiving on mental, self-rated, and physical health: evidence from the China health and retirement longitudinal study.

Given the escalating demand for care services, understanding the impact of informal caregiving, providing unpaid care for family members, on own health is essential. This study longitudinally analyzed the association of caregiving (and different caregiver types) with mental, physical, and self-rated health. Urban-rural, gender, and employment heterogeneity were further investigated. Based on three-wave data (2011, 2013, and 2018) from the China Health and Retirement Longitudinal Study, we used growth curve models to assess the impact of informal caregiving (providing care to family members) and caregiver types (caregivers to grandchildren, parents, spouses, or multiple family members) on three health outcomes (depressive symptoms, self-rated health, and activities of daily living limitations). Our study included 13,377 individuals. Results showed a negative correlation of caregiving with mental, physical, and self-rated health. Compared to noncaregivers, spousal caregivers and multiple caregivers were both associated with worsening mental, self-rated, and physical health. In contrast, adult child caregivers were only negatively associated with mental health, and grandparent caregiving did not significantly affect any health outcomes. Further heterogeneity analysis showed that gender did not moderate the relationship between caregiving and health, whereas the negative association between caregiving and health was more pronounced among the rural population and those employed in agriculture. Findings from the present study suggest that caregiving is detrimental to health, and recommend considering caregiver type when examining caregiving and health. These findings have vital implications for policymakers in addressing the challenges of structuring and implementing a sustainable informal care system.

Caring for a parent with dementia: The psychological well-being of adult children

BackgroundCaregiving for a parent with dementia has both positive and negative influences on psychological well-being of adult children and perceived social support plays an essential role in dementia caregiving process. ObjectivesWe examined how the degree of caregiving intensity influences mental health among Chinese adult children then further explored how perceived social support influences the relationship between intensity and psychological well-being. Research design and settingCross-sectional study in Kunming, mainland China between November 2022 and January 2023. MethodsWe interviewed 320 adult dementia child caregivers. Linear regression and multiple mediation analysis using Hayes’ process model were used to assess the relationship between caregiving intensity and psychological well-being, as well as the mediating role of perceived social support. ResultsThe study found that caregiving intensity was positively associated with depression and negatively associated with life satisfaction. A lack of perceived social support exacerbated these effects for the adult children. Specifically, the caregivers reported higher caregiving intensity when they perceived less family support, which is in turn associated with greater depression and lower life satisfaction among the caregivers. Likewise, those who reported higher caregiving intensity was reported lower friend support, which was in turn associated with greater depression. Conclusions and implicationsThe findings emphasize the importance of social support, especially family support, and the necessity for health practitioners to provide targeted interventions on both negative and positive aspects of psychological well-being among dementia caregivers and to strengthen caregivers’ resources for social support to enhance their well-being. While these findings are cross-sectional, it is logical to assume that those who perceive less support feel that their caregiving responsibilities are more intense, and that intensity could cause the caregiver to withdraw from friends.

Pre-onset relational investments and dementia caregiver wellbeing: Comparing theorizing from the investment model and the theory of resilience and relational load

ABSTRACT Dementia alters relationships between family caregivers and their relatives living with dementia. Drawing from the theory of resilience and relational load (TRRL) and the investment model, this study assesses the influence of dementia caregivers’ pre-onset relational investments in these relationships (relationship maintenance and communal orientation) on their individual and relational wellbeing (depression, personal growth, love/closeness). Two mediating mechanisms (relational deprivation, ongoing relationship maintenance) were examined, and disease severity was tested as a moderator. Using surveys from 454 dementia family caregivers (majority adult child and spousal caregivers), analysis revealed that pre-onset relational investments generally support caregiver wellbeing through ongoing relationship maintenance as a mediator. Disease severity moderated these associations. Findings are discussed in light of TRRL and investment model theorizing.