Spousal Caregivers Research Articles

Transition Into the Caregiver Role Among Older Adults: A Study of Social Participation and Social Support Based on the Canadian Longitudinal Study on Aging.

Older adults (65 years and older) are increasingly providing care for their spouses, family members, and nonkin others (e.g., friends and neighbors). However, available knowledge of older caregivers is limited to spousal caregivers and their psychological outcomes. Other caregiver role types or social outcomes among older caregivers are less well studied. Thus, this study examines the social participation and social support among older caregivers by comparing 3 types of older caregivers, including spousal caregivers, nonspouse family caregivers, and nonkin caregivers. Participants for this study were drawn from the Baseline and Follow-up 1 data from the Canadian Longitudinal Study on Aging. A total of 3,789 older adults became caregivers during the 2 data collection time points. Linear mixed models were applied to examine the change of social participation and social support among the three caregiver role types over the course of survey. The study finds that after transitioning into the caregiving role, spousal caregivers, and nonkin caregivers experienced a decline in social participation, and spousal caregivers also received less social support over time. When comparing the 3 caregiver role types, spousal caregivers reported the greatest decline in social participation and social support. This study adds to the relatively limited knowledge of older caregivers by presenting the changes in social participation and social support after transitioning into 3 types of caregiver roles. The results indicate the need to provide support for caregivers, particularly spousal and nonkin caregivers, to help them maintain social relationships and networks for participation and support.

Insomnia Symptom Trajectory of Spouse Caregivers of Older Adults with Functional Limitations

ABSTRACT Objectives This study examined the long-term impact of spouse caregiving on insomnia symptoms, compared to propensity-score matched non-caregivers. Methods Health and Retirement Study data between 2006 and 2018 were used. Caregivers (n = 403) were respondents (aged 50+) who assisted their heterosexual spouses in performing (instrumental) activities of daily living at baseline. Non-caregivers were matched using a propensity score matching procedure based on baseline characteristics. Insomnia symptoms were measured every 4 years for both groups. Poisson mixed-effect models estimated the association between caregiver status and insomnia symptoms. Results Compared to matched non-caregivers, caregivers had similar severity of insomnia symptoms at baseline ( β caregiver = 0.018, 95% CI = −0.089, 0.124) and reported a similar yearly change rate ( β caregiver × time = −0.008, 95% CI = −0.017, 0.001). No moderation effects of care-recipients’ dementia status and social support were significant. Conclusions In this study sample, there is no evidence that spouse caregivers, specifically those who performed light duties, experience more severe insomnia symptoms than non-caregivers. Clinical implications Spouse caregiving, especially in a light-duty capacity, may not be detrimental to the caregivers’ sleep health. More data are needed regarding insomnia in spouse caregivers with heavy duties of care to fully assess the health impact of the caregiving experience.

Perceived neighborhood disorder, social cohesion, and depressive symptoms in spousal caregivers

Objectives Prior research into the factors linked to mental health of caregivers of older adults have largely focused on individual- or household-level characteristics, but neighborhood supports and stressors may also matter for caregiver mental health. The current study fills this knowledge gap by examining the association of neighborhood social cohesion and disorder and depressive symptoms among spousal caregivers. Method We used data from the 2006 to 2016 waves of the Health and Retirement Study, which include 2,322 spousal caregivers. Negative binomial regression models were estimated to examine the association of perceived neighborhood social cohesion and disorder with depressive symptoms. Results A higher level of perceived neighborhood social cohesion was associated with fewer depressive symptoms (b = –0.06, 95% CI: −0.10, −0.02). On the other hand, greater perceived neighborhood disorder was associated with more symptoms (b = 0.04, 95% CI: 0.01, 0.08). The association of perceived social cohesion with depressive symptoms remained even after controlling for perceived disorder, but neighborhood disorder was no longer associated with depressive symptoms after accounting for reported neighborhood social cohesion. Conclusions This study suggests neighborhood supports and stressors matter for caregiver well-being. Neighborhood-based social support may be particularly important for caregivers as they navigate the challenges caregiving for an aging spouse can bring. Future studies should determine if enhancing positive characteristics of the neighborhood promotes well-being of spousal caregivers.

A Double Whammy? Psychosocial Disadvantages of Dementia Caregivers with Cancer Histories

ABSTRACT Guided by the Diathesis-Stress model, this study examined how cancer history interacted with caregiving status to determine the psychosocial functioning of dementia caregivers. This study assessed a set of indicators for psychological health and social connections among 85 spousal caregivers of persons with Alzheimer’s disease and 86 age- and gender-matched spouses of healthy controls at study entry and 15–18 months later. Results showed that dementia caregivers with cancer histories reported lower social connections relative to caregivers without cancer histories or non-caregivers with or without cancer histories, and reported lower psychological health relative to non-caregivers with and without cancer histories at two time points. The findings highlight that a history of cancer is a predisposing vulnerability factor for psychosocial dysfunctions among dementia caregivers and address gaps in knowledge about the psychosocial adjustment of cancer survivors as caregivers.

Impacts of Caregiving on Health of New Spousal Caregivers to Older Adults in the United States: A Coarsened Exact Matching Analysis.

Spousal caregivers of older adults, especially new spousal caregivers, face increased risks of negative health outcomes due to the demands of caregiving and their own health decline. Estimating the impacts of caregiving on health without controlling for caregivers' own aging-related health decline could exaggerate the negative health consequences of caregiving, while focusing solely on caregivers could result in selection bias where healthier individuals enter and/or remain in caregiving. This study aims to estimate the impacts of caregiving on health of new spousal caregivers while controlling for observable confounders. We utilized coarsened exact matching analysis to compare health outcomes between new spousal caregivers and spousal non-caregivers using pooled panel data from 2006 to 2018 in the Health and Retirement Study. We analyzed 242,123 person-wave observations from 42,180 unique individuals, among whom 3,927 were new spousal caregivers. Variables used for matching were classified into three categories: care needs, willingness to provide care, and ability to provide care. Two-year outcomes assessed are spouse's self-rated health, depressive symptoms, and cognitive functioning. A total of 3,417 (87.01%) new spousal caregivers were matched with 129,798 observations of spousal non-caregivers. Regression analysis indicated being a new spousal caregiver was associated with a 0.18 (SE=0.05) unit increase in number of depressive symptoms. No statistically significant results were identified for self-rated health and cognitive functioning. Our results highlighted the needs to address mental health among new spousal caregivers and emphasized the importance of addressing mental health in long-term care programs and policies.

Heterogeneity in the mental health cost of caring for others

Drawing on the stress process, gender theory, and social roles theories, this study examines whether the associations between caregiving and mental health reflect the heterogeneity in caregiving experiences. It explores whether differences in care circumstances (location and intensity of care) and caregiver characteristics (gender and relation to care recipient) impact caregivers' health. While previous research has looked at these factors individually, this study uses longitudinal estimation methods to examine their combined associations with mental health. Using British data from the nationally representative panel survey Understanding Society (N = 366,907), fixed-effect models are used to assess the associations between the location and intensity of care, the caregiver's gender, and the relation to the care recipient and mental health. I report differences in mental health between non-caregivers and caregivers, as well as among caregivers across different care circumstances. While the results highlight the somewhat unique nature of each care circumstance and its relation to mental health, they uncover some general patterns. First, caregiving is a stressful social role. Second, care intensity is a crucial dimension of variation in the relationship between caregiving and mental health. Third, the location of care interacts with care relations only for less intensive caregivers. Fourth, there is a gradation in the negative association between caregiving activities and mental health by care relations. Finally, female caregivers are more susceptible to role overload and role captivity. When the care act is more expected and normative, such as when caring for a spouse, there is no difference by gender in mental health. Yet, differences by gender are evidenced when the intensive care act is less normative. This study unveils nuanced patterns in the joint and unique relations between care circumstances, caregiver characteristics, and mental health, and underscores the importance of effective care support especially for spousal and female parental caregivers.

Analysis of action planning, achievement and life purpose statements in an intervention to support caregivers of persons with heart failure

BackgroundCaregivers of persons living with heart failure (HF) experience uncertainty related to heart failure trajectory and caregiving demands. Caregiver Support is a nurse-led intervention consisting of a well-being assessment, development of a life purpose statement, and action planning related to self-care and support for caregivers. ObjectivesThe goal of this study was to describe the caregivers’ action plans, action plan achievement and life purpose statements. MethodsWe used inductive content analysis to code life purpose statements and action plans by 2 coders. Descriptive statistics were used to describe the average number of action plans set per caregiver, the average number of themes coded per action plan and life purpose statement, and the status of goal achievement (i.e., by thematic domain, subdomains). Goal achievement was defined categorically: Achieved, not achieved, and not assessed. The achievement rate was calculated as the proportion of achieved action plans out of the total number of assessed action plans. ResultsThe sample (n = 22) was predominantly women, spousal caregivers, and an average age of 62±14.2 years. Thirty-six percent of caregivers were Black and 41% reported financial strain. Action plans comprised five categories: personal health and well-being, social support, home environment, instrumental support and other. The most common topics of life purpose statements were faith and self-care/actualization. Of 85 action plans, 69 were assessed and 66.7% were achieved. ConclusionsThese findings highlight the diversity of values and needs of caregivers and provides insights for additional person-centered support.

Relationship Matters in Dementia Caregiving: A Comparative Study in West Bengal, India

Numerous studies have revealed that adverse health issues are common in demented caregivers; however, less is known about the health consequences of spouse caregivers. The purpose of this study was to compare the psychological health of spousal and non-spousal caregivers of demented individuals. In addition, it also examined the association and strength of the relationship between spouse and non-spousal caregivers’ socio-economic condition. This was a cross-sectional study that included 136 caregivers of demented individuals. Among them, 55.89% ( n = 76) were a spouse. The findings suggest that spousal caregivers who care for their demented spouse feel higher anxiety and depressive symptoms as compared with non-spousal caregivers. Socio-demographic factors were shown to be an important predictor of spousal caregivers’ mental health condition. The findings of this study have major policy implications owing to the predicted increase in demand for caregivers, especially spousal caregivers, as the incidence rate of dementia rises over time. It is essential that we endorse not only the health of the care-recipient but also the spousal caregiver as well. We believe that improving access to caregivers’ respite programs would benefit spousal caregivers.

Exploring the Caregiver Role after Deep Brain Stimulation Surgery for Parkinson's Disease: A Qualitative Analysis.

This pilot study aimed to explore how caregiver spouses make sense of themselves one and five years after their partner's deep brain stimulation (DBS) surgery for Parkinson's disease. 16 spouse (8 husbands and 8 wives) caregivers were recruited for the interview. Eight struggled to reflect on their own lived experience and primarily focused on the impact of PD on their partners, such that their transcripts were no longer viable for interpretative phenomenological analysis (IPA). A content analysis showed (1) how these 8 caregivers shared less than half as many self-reflections than the other caregivers, (2) that there was a bias to reflect on their partner's experience answering the opening question, (3) the bias continued when answering subsequent questions, and (4) there was a lack of awareness of this bias. No other patterns of behaviour or themes were able to be extracted. The remaining 8 interviews were transcribed and analysed using IPA. This analysis discovered 3 inter-related themes: (1) DBS allows carers to question and shift the caregiver role, (2) Parkinson's unites and DBS divides, and (3) seeing myself and my needs, DBS enhances visibility. How these caregivers interacted with these themes depended on when their partners were operated. The results suggested that spouses maintained the role of caregiver one year post DBS because they struggle to identify themselves in any other way but were more comfortable reassociating into the role of spouse 5 years post surgery. Further inquiry into caregiver and patient identity roles post DBS is recommended as a means of supporting their psychosocial adjustment after surgery.

Abstract 5540: Spouse caregivers of patients with glioblastoma report unmet needs throughout the disease trajectory

Abstract Glioblastoma (GBM) is a devastating and terminal cancer that results in memory loss, cognitive declines, personality changes, neuropsychiatric symptoms, and physical impairments that greatly affect quality of life of both the patient with GBM and their primary caregiver, who is often a spouse or partner. These caregivers describe feeling unsupported and unprepared to assume the responsibilities associated with addressing the progressive physical, emotional, and psychological support needs of their loved ones with GBM. In this qualitative study, female spouse primary caregivers were recruited through a private Facebook support group to write letters describing their experiences in caring for their loved ones with GBM. Using a reflexive thematic analysis, 101 letters from caregivers were analyzed for unmet needs, challenges, and opportunities for better care and support. Caregivers expressed feeling unsupported and poorly prepared, and described different levels and types of needs and challenges throughout the GBM disease trajectory. The 4 phases of the trajectory included the acute phase (first 2-4 months post diagnosis), living with disease progression, end of life stage, and the bereavement stage. Challenges included difficulties adapting to sudden life changes, the need for more education on what to expect, feelings of sudden loss, relationship strain, and not having enough knowledge about GBM. Associated emotional responses included feelings of fear, lack of control, agony, disappointment, and exhaustion. These challenges and emotional impact were greatest during the acute and living with disease progression phases. Caregivers also described relying heavily on friends, community supports (such as faith groups), peer-support through the Facebook group during this living with disease progression phase, but still experienced high levels of relationship strain and other unmet needs. These findings on the primary caregivers’ experiences provide opportunities to guide more timely and tailored interventions to provide support and improve care for patient/caregiver dyads to help mitigate the burden of this progressive disease and improve quality of life for caregivers. Citation Format: Diana L. Coman, Megan Chard, Lisa Desautels, Barbara J. Lutz, Laurie Minns. Spouse caregivers of patients with glioblastoma report unmet needs throughout the disease trajectory. [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 5540.

Association between Advance Care Planning for Older Adults and Family Caregivers’ Sense of Security in Home Care Settings: A Prospective Cohort Study

Family caregivers’ sense of security benefits older adults who receive home care. Advance care planning (ACP) is reported to affect family caregivers’ experience positively, but it might differ depending on family caregivers’ kin relationships with the older adults. This study aimed to investigate whether ACP for older adults in home care settings is associated with family caregivers’ sense of security and whether such an association depends on the family caregivers’ status as spouses or adult children. Clarifying this association may offer practical support for implementing ACP while maintaining family caregivers’ sense of security. This study was part of a prospective cohort study in Japan. The participants were older adults who used home-visit nursing services, their family caregivers, and the nurses who cared for them, recruited through the professional associations of home care nurses across Japan. Family caregivers answered a sense of security questionnaire, and the nurses were asked whether ACP was conducted. Data were collected three times from nurses and twice from family caregivers over a three-month period from August 2019 to June 2020. Multivariate logistic regression analyses were performed to examine the association between ACP implementation and positive changes in the sense of security scores after three months. Data from 169 cases were analyzed; 28.1% of the family caregivers were men and 55.6% were spouses. ACP was performed in 53.8% of the cases. The multivariate analysis showed an interactive effect between ACP implementation and family caregivers’ kin relationships. For spouses, ACP was significantly associated with a positive change in their sense of security. For adult children, such an association was not found. Thus, ACP might have a positive effect on caregiving spouses’ sense of security. Adult child caregivers, who often have multiple responsibilities and have difficulties facing their parents’ physical decline, may need support in addition to ACP.

Physio-psycho-social interaction mechanism in dyadic health of young and middle-aged stroke survivors and their spousal caregivers: a longitudinal observational study protocol

IntroductionIn recent years, stroke has become more common among young people. Stroke not only has a profound impact on patients’ health but also incurs stress and health threats to their...

A couple-based dyadic coping intervention for couples coping with colorectal cancer: A pilot feasibility study.

Compared to individual coping, dyadic coping has significant impact on cancer adaptation in cancer couples. Few intervention studies have focused on dyadic coping in colorectal cancer couples. The purpose of this study was to test the feasibility, acceptability, and preliminary efficacy of a Systemic Transactional Model-guided, couples-based dyadic coping intervention program for colorectal cancer couples. A pre-/post-test single-group pilot study was conducted among Chinese colorectal cancer couples. Couples received six intervention sessions delivered by researchers via face-to-face or telephone. Recruitment and retention rates were calculated to assess program feasibility. Quantitative and qualitative post-intervention program evaluation were evaluated to assess acceptability. Additionally, effect sizes were calculated using Dyadic Coping Inventory, Dyadic Adjustments Scale, Medical Outcomes Study 12-item Short-Form, Benefit-Finding Scale, and Hospital Anxiety and Depression Scale to assess preliminary program efficacy. Of the 31 eligible couples approached, 21 dyads completed the baseline questionnaire, with 16 dyads completing the intervention and post-intervention assessments. Recruitment (67.7%) and retention (76.2%) rates supported the feasibility of the intervention program. Program acceptability was supported by participant satisfaction with the program. The intervention had small-to-medium effect sizes (Cohen's d=0.19-0.48) in improving dyadic coping and most cancer adaptation outcomes for both patients and their spousal caregivers, validating the preliminary efficacy of the program. The couples-based dyadic coping intervention is feasible, acceptable, and effective for improving dyadic coping levels and cancer adaptation in colorectal cancer couples. Further examination of this intervention program in a large-scale randomized controlled trial is required.

Examination of Factors Associated With Informal Caregivers’ Reactions to Different Problem Behaviors Among Persons With Alzheimer’s Disease

Problem behaviors among persons with Alzheimer’s Disease (AD) have a significant impact on caregivers. However, caregivers’ subjective reaction to the problem behaviors better predicts the caregiving outcomes than the objective frequency of problem behaviors. With a sample recruited from community agencies serving Alzheimer’s Disease (AD) caregivers (n = 108), this study examined the effect of various factors on the caregivers ’reaction to different types of problem behaviors, including demographics, caregivers’ knowledge about the AD, and resilience level, controlling for the frequency of problem behaviors and other caregiving context factors. Caregivers’ reaction to problem behaviors was measured by the Revised Memory and Behavior Problem Checklist. Findings indicated that African American caregivers had a lower level of reactions to disruptive ( B = −3.956; p < .01) and depressive behaviors ( B = −2.443; p < .05) than white caregivers, but not for memory-loss problems. Age, being spousal caregivers, and knowledge of AD only affected reactions to memory-loss problems but not for other types of behaviors. No effects were observed for personal resilience. Intervention should be tailored to the varied needs of family caregivers to deal with problem behaviors among people with AD to delay institutionalization. More training/resources at the skill level over the information-only caregiver intervention should be promoted.

Unmet needs and depression among spousal caregivers: the mediating role of marital satisfaction

Objectives Previous research has identified that unmet needs are associated with adverse mental health outcomes in older adults. However, the unmet needs of older adults’ spousal caregivers are unknown. The present study examined the association between unmet needs and depression among spousal caregivers, and whether marital satisfaction mediated this association. Methods We included 1,856 participants who provided care to their spouses with difficulties in activities of daily living (ADL) and instrumental activities of daily living (IADL) from the 2018 China Health and Retirement Longitudinal Survey. Unmet needs of spousal caregivers were assessed as the total number of ADL/IADL tasks with which respondents had unmet needs. Path models were conducted to evaluate the associations between unmet needs, marital satisfaction, and depression. Subgroup analyses by sex were conducted to examine the sex differences regarding the associations. Results Spousal caregivers with more unmet ADL/IADL needs reported higher levels of depression (p < 0.001). Additionally, for wife caregivers, unmet ADL/IADL needs were associated with lower marital satisfaction, and lower marital satisfaction was associated with higher degrees of depression, indicating that marital satisfaction partially mediated the association between unmet needs and depression (p < 0.01). However, marital satisfaction did not mediate the association between unmet needs and depression among husband caregivers. Conclusions The mediating effect of marital satisfaction on the association between unmet needs and depression only existed in wife caregivers. Social services should be provided to meet the needs of caregivers with ADL/IADL difficulties, and interventions should be implemented to promote the marital satisfaction of wife caregivers.

Qualitative study exploring heterogeneity in caregiving experiences post-stroke in Singapore

ObjectiveStroke, a common illness in older adults, accounts for up to 4% of direct medical costs in developed nations. Informal caregiving contributing a significant proportion of economic burden post-stroke warrants...

Freedom and loneliness: dementia caregiver experiences of the nursing home transition.

the transition to nursing home care has previously been linked to negative outcomes for spousal caregivers of persons with dementia (PwD). However, little is known about the experience or trajectory of loneliness in spousal caregivers during this time. to explore experiences of loneliness in caregivers during the nursing home admission of their spouse or partner with dementia. semi-structured interviews were conducted with 11 individuals living in Ireland between Oct 2020 and June 2021, who were married to/partnered with a PwD who had, in the past 7 years, moved to full-time nursing home care. Data were collected and analysed using a deductive qualitative analytic strategy in the grounded theory tradition. data were interpreted in the context of Weiss' typology of social and emotional loneliness and indicated that social loneliness increased for many at the point of diagnosis, decreasing somewhat after the transition, while emotional loneliness increased across the transition. Data were used to refine an existing synthesised model of loneliness, providing an updated model of the causes and contexts of loneliness. the transition to nursing home care differentially affects loneliness subtypes. Results have implications for other transitions, which should be assessed in terms of various subtypes of loneliness. Our refined theoretical synthesis model of loneliness also warrants further evaluation.

A Cross-Sectional Study on the Associations between Economic, Social, and Political Resources and Subjective Caregiver Burden among Older Spousal Caregivers in Two Nordic Regions

Inspired by the caregiver stress process model emphasising the role of resources for caregiving outcomes, the aim of this study was to investigate the prevalence of subjective caregiver burden (SCB) and its associations with individual social, economic, and political resources among older spousal caregivers in a Nordic regional setting. Cross-sectional survey data collected in 2016 in the Bothnia region of Finland and Sweden were used, where 674 spousal caregivers were identified and included in the analyses. The descriptive results showed that about half of the respondents experienced SCB. SCB was more common among Finnish-speaking caregivers. Results from the multivariate logistic regression analysis showed that none of the assessed political resources were significantly associated with SCB when controlling for other variables. Experiencing financial strain was associated with SCB, while personal income was not. Frequent contact with family members was statistically significantly associated with SCB. Future research could use longitudinal data to determine causal relationships, and when data allow, test the full caregiver stress process model to investigate the role of mediating factors in different comparative settings. Accumulated evidence on risk factors for negative outcomes of informal caregiving can contribute to effective screening tools for identifying and supporting vulnerable caregivers, which is becoming increasingly important with the ageing population.

The Longitudinal Association between Co-Residential Care Provision and Healthcare Use among the Portuguese Population Aged 50 and Over: A SHARE Study.

Co-residential care is associated with poor caregiver health and a high burden. Although Portugal relies heavily on co-residential care by individuals aged 50 and over, studies on the impact of co-residential care provision on Portuguese caregivers' healthcare use are lacking. This study aims to analyze the impact of co-residential care (spousal and non-spousal care) on healthcare use of the Portuguese population aged 50 plus. Data from waves 4 (n = 1697) and 6 (n = 1460) of the Survey of Health, Ageing and Retirement in Europe (SHARE) were used. Negative Binomial Generalized Linear Mixed Models with random (individual level) and fixed (covariates) effects were performed. The results show that the number of visits to the doctor decrease significantly over time for the co-residential spousal caregivers as compared to the non-co-residential caregivers. This result highlights the fact that the Portuguese co-residential spousal caregiver group is at a higher risk of not using healthcare, thus jeopardizing their own health and continuity of care. Promoting more accessible healthcare services and implementing public policies adjusted to the needs of informal caregivers are important to improve the health and healthcare use of Portuguese spousal co-residential caregivers.

Exploring the Meaning of Dementia Grief in Female, Spousal Caregivers: A Qualitative Study

Exploring the Meaning of Dementia Grief in Female, Spousal Caregivers: A Qualitative Study