Family Involvement in the Care of Nursing Home Residents With Dementia: A Scoping Review.

Family members are involved in the lives of older adults with dementia in complex ways. This scoping review synthesizes existing research on family involvement in the care of nursing home residents with advanced dementia. Using the Arksey and O'Malley scoping review framework, electronic searches of PubMed, EBSCO's CINAHL Complete, and APA PsychInfo on the Ovid platform were conducted. Twenty-eight studies met inclusion criteria. Emergent themes and definitions of involvement were obtained through thematic analysis, including: (1) contact (through visitation, calling, or writing letters); (2) engagement in care activities (instrumental/activities of daily living); (3) planning and monitoring care (being aware of health and treatment changes, partnership with care staff, ensuring adequate care, and decision-making); and (4) supporting the resident (advocacy, socioemotional support, and financial support). Moreover, limited psychometrically sound instruments exist to measure family involvement. These limitations stall the progression of research targeting family involvement.

Gratitude Predicts Meaning in Life in Family Caregivers of Persons with Alzheimer's Disease.

Gratitude is a well-known and researched internal positive psychological resource. Empirical data, however, on the association between gratitude, meaning in life, and burden in family caregivers of persons with Alzheimer's disease is scant. The aims of this study were to (1) investigate the relationships among these variables in a sample of family caregivers of persons with Alzheimer's; and (2) determine if gratitude mediates the effects of perceived burden on meaning in life in this population. One-hundred and twenty-six adult family caregivers, most of whom were an intimate partner or adult child of a person with Alzheimer's, completed the Gratitude Questionnaire-Six Item, the Meaning in Life Questionnaire, the Zarit Burden Inventory, and other relevant measures. A series of OLS regression models, guided by the caregiver stress process model, were conducted. These analyses demonstrated that gratitude was a predictor of the presence of meaning in life among the caregivers in this study even when other key variables were considered. Furthermore, analyses revealed that gratitude fully mediated the effects of caregiver burden on the presence of meaning in life in this sample. Thus, clinicians should consider gratitude as an important internal resource for cultivating meaning in life in this population, especially when caregiver burden is present. Gratitude-bolstering clinical interventions should be further developed and tested as both stand-alone and complimentary additions to empirically supported psychoeducational approaches for supporting health and well-being in this population.

Using Clustering Methods to Map the Experience Profiles of Dementia Caregivers.

Background and Objectives: Caregivers of persons living with dementia report wide-ranging lived experiences, including feelings of burden and frustration but also positivity about caregiving. This study applies clustering methodology to novel survey data to explore variation in caregiving experience profiles, which could then be used to design and target caregiver interventions aimed at improving caregiver well-being. Research Design and Methods: The k-means clustering algorithm partitioned a sample of 81 caregivers from the Midwest region of the United States on the basis of 8 variables capturing caregiver emotions, attitudes, knowledge, and network perceptions (adversity: burden, anxiety, network malfeasance; network nonfeasance; positivity: positive aspects of caregiving, preparedness and confidence in community-based care, knowledge about community services for older adults, and network uplift). The experience profile of each segment is described qualitatively and then regression methods were used to examine the association between (a) experience profiles and caregiver demographic characteristics and (b) experience profiles and study attrition. Results: The clustering algorithm identified 4 segments of caregivers with distinct experience profiles: Thriving (low adversity, high positivity); Struggling with Network (high network malfeasance); Intensely Struggling (high adversity, low positivity); Detached (unprepared, disconnected, but not anxious). Experience profiles were associated with significantly different demographic profiles and attrition rates. Discussion and Implications: How caregivers respond to support interventions may be contingent on caregivers' experience profile. Research and practice should focus on identifying public health strategies tailored to fit caregiver experiences. Clinical Trial Registration: NCT03932812.

Positive Aspects of Caregiving in Familial Care for Nonagenarians and Centenarians: Findings from Hong Kong Centenarian Study.

Caregiving for the fast-growing but vulnerable oldest-old population may involve distinct challenges but also gratification. We analyzed quantitative and qualitative data from family caregivers of community-dwelling older adults aged 95 or above in Hong Kong. Quantitative analysis of 143 caregivers revealed that higher age, dependence on basic activities of daily living, independence on instrumental activities of daily living, and intact hearing ability of the older adults, and absence of a domestic helper and better self-rated health of the caregivers were associated with more positive aspects of caregiving. Qualitative analysis of the 96 caregivers who mentioned at least a positive aspect from their caregiving identified three themes: acquiring caregiving skills, fulfilling family love and obligation, and preparing for graceful aging. Our findings elaborated the nature and mechanism of caregiving gains against the unique backdrop of exceptional longevity and the Chinese cultural expectations of filial piety.

A randomised controlled trial of the Learning Skills Together (LST) intervention to improve dementia family caregivers' self-efficacy with complex care.

BACKGROUND: Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a 6-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD. METHODS: To test the efficacy of LST, we will conduct a two-arm single-site randomized controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomization, a post-intervention survey, and a 3- and 6-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention. DISCUSSION: LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care. TRIAL REGISTRATION: Clinical Trials.gov NCT05846984 . This study was registered on May 6, 2023.

A randomised controlled trial of the Learning Skills Together (LST) intervention to improve dementia family caregivers' self-efficacy with complex care.

Background: Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a six-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD. Methods: To test the efficacy of LST, we will conduct a two-arm single-site randomised controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomisation, a post-intervention survey, and a three- and six-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention. Discussion: LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care.

A Scoping Review to Contribute to Knowledge About Culturally Adapting Interventions for Latino Family Caregivers of Persons Living With Dementia.

INTRODUCTION: Few interventions have focused on Latino family caregivers to persons with dementia, addressing their unique needs. This review aimed to identify best practices in cultural adaptation to make recommendations for adapting interventions for Latino family caregivers of persons living with dementia. METHOD: This scoping review was conducted following the Joanna Briggs Institute Scoping Review guidelines, with findings extracted and summarized from 17 studies addressing cultural adaptation. RESULTS: Frameworks guiding the adaptations were comprehensive, addressing cultural values and traditions and the social context faced by Latino family caregivers. Features of the adaptations included diverse teams of researchers and community members, including Latino family caregivers, to inform the integration of cultural values into the content, mode, and place of intervention delivery. DISCUSSION: Culturally adapting evidence-based interventions will increase the number of available interventions for Latino family caregivers to persons living with dementia, thus reducing inequities in caregiver support.

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

BACKGROUND: Caregiving 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. OBJECTIVES: We 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 SETTING: Cross-sectional study in Kunming, mainland China between November 2022 and January 2023. METHODS: We 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. RESULTS: The 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 IMPLICATIONS: The 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.

mHealth based intervention by social care professionals to support family caregivers to persons with dementia living at home in Sweden (Caregiver Connect): a randomized controlled trial.

BACKGROUND: The majority of persons with dementia in Sweden reside in their own homes with support from family members. Approximately, 12% of persons with dementia have immigrant background. Within the next 20 years, the number of persons with dementia who are non-ethnic Swedes is said to double. Family caregivers with immigrant backgrounds are noted to receive less support in the community than ethnic Swedes and rate their health status lower than ethnic Swedish peers. The Swedish National Board of Health and Welfare have highlighted the importance of follow-up support for family caregivers with immigrant backgrounds as there is a recognized gap in research and available information tailored to meet the needs of this group. PURPOSE OF THE STUDY: The purpose of the study is to test effectiveness of an mHealth based intervention through which community social workers can improve caregiving competence of non-European immigrant family caregivers of people with dementia living at home in Sweden. The overarching aim is to reduce caregiver burden and depressive symptoms, and improve quality of life. METHODS: A randomized controlled trial (RCT) including wait list control group will be performed consisting of an intervention group (A, n = 44) and a wait list control group (B, n = 44), totaling a sample size of 88. On completion of the 10-weeks long intervention in the intervention group, the intervention will be delivered to group B. Effect of the intervention will be analyzed between and within groups over time. The content of the educational component of the intervention is inspired by the iSupport manual developed by the World Health Organization. The contents, in the form of a booklet, aims to equip the family caregivers with structured information on understanding dementia as a condition and its management at home, including self-care guidance designed specifically for family caregivers themselves. DISCUSSION: Similar telephone-delivered intervention studies targeted for family caregivers to persons with dementia are ongoing in Malaysia and will start in India using the same booklet adapted to the local context. These studies will provide evidence on the effectiveness of using digital technologies to deliver support to those who may not be reached or adequately served by the traditional healthcare system. TRIAL REGISTRATION: ISRCTN registry, Registration number ISRCTN64235563.

The impact of "Aging with Medical and Caregiving" on family caregiving-Evidence from China's pilot cities for integrating medical and caregiving.

Easing the pressure on family caregiving and addressing the shortage of manpower for family caregiving are significant challenges that China faces in responding to its aging population. This study utilizes data from the 2015 and 2020 China Health and Retirement Longitudinal Study (CHARLS) and employs a Difference-in-Difference method to investigate the impact of pilot policies that integration of medical and caregiving for aging individuals. The findings reveal that these pilot programs are successful in reducing the amount of time spent on family caregiving and the financial burden placed on families, effectively relieving the pressure associated with family caregiving. However, the effects of these programs differ depending on the level of disability, household registration, and the geographical location of the participants. Further analysis suggests that these pilot programs achieve these positive outcomes by increasing government investment in health and wellness funds and providing in-family medical and caregiving services.

Effectiveness of a health education program for people with dementia and their family caregivers: An intervention by nurse practitioners.

PURPOSE: This study assesses the effectiveness of a health education program on caregiving outcomes for people with dementia and their families. METHODS: This quasi-experimental study involved 250 people with dementia and their family caregivers. Behavioral problems in people with dementia were assessed using the Chinese version of the Cohen-Mansfield Agitation Inventory-community form. Family caregiver outcomes were measured using the Agitation Management Self-Efficacy Scale, Caregiver Preparedness Scale, Competence Scale, and Community Resource Awareness and Utilization Assessment. RESULTS: Following the intervention, the experimental group demonstrated significant improvements in terms of self-efficacy, preparedness, competence, and awareness and utilization of community resources among family caregivers. Additionally, the experimental group exhibited lower levels of behavioral problems among people with dementia. CONCLUSIONS: This study helped improve caregiving outcomes for people with dementia and their family caregivers. Therefore, outpatient healthcare providers can utilize these findings to enhance care for this population.

Trait resilience as a moderator between personality dysfunction and caregiving stress in caregivers of children and adults with developmental disabilities.

Background: Long-term care of a relative with a disability is associated with negative consequences on the caregiver's mental health. Therefore, investigating how some personality traits, such as resilience, protect caregivers with dysfunctional personality traits from caregiving stress is necessary. This study examines the moderating role of resilience in the relationship between caregiver's personality dysfunction and care stress. Methods: A total of 224 family caregivers of children and adults with developmental disabilities participated in this cross-sectional research. They completed self-report measures of resilience, personality dysfunction, and care stress. Results: The results show that medium and high levels of resilience protect familial caregivers from the adverse effects of personality dysfunction on stress. The relationship is maintained for three of the five dysfunctional personality traits (antagonism, disinhibition, and psychoticism). Conclusions: From a theoretical point of view, the results show the contribution of the dimensional personality model to the study of caregiving stress. From a practical standpoint, the results can be used to optimise the resilience of familial caregivers, providing them with tools to take better care of their relatives.

The Effect of Family Nursing Conversations as an Add-on to Multidisciplinary Treatment in Patients with Chronic Non-Cancer Pain: A Quasi-Experimental Trial.

Introduction: Chronic non-cancer pain (CNCP) is a lifelong condition with radical consequences, calling for management involving patients' families. Interventions based on the family systems nursing framework by Wright and Leahey have proved beneficial in other populations but require investigation in a CNCP population. This trial assumed that family nursing conversations (FNCs) based on the family systems nursing framework would increase patients' and family members' self-efficacy concerning CNCP management. Objective: To investigate whether an intervention with FNCs as an add-on to the usual multidisciplinary treatment of CNCP would have an effect on patients' and family members' self-efficacy. Additionally, to investigate any impact on family function, health-related quality of life, anxiety, and depression. Methods: The trial applied a prospective non-blinded quasi-experimental design with two comparable groups of patients and family members: a historical control group (HCG) and an intervention group (IG). The intervention was executed by nurses employed at a multidisciplinary pain center in the Capital Region of Denmark. HCG data were collected before the nurses' intervention training. The primary outcome was self-efficacy. Secondary outcomes were family function, health-related quality of life, anxiety, and depression. Results: In total, 58 patients and 85 family members were included. The primary outcome, self-efficacy, detected no statistically significant between-group differences in mean change for patients, p = .990, or family members, p = .765. A statistically significant effect in favor of the IG was found in between-group differences in mean change in patients' behavioral family function, p = .034, and anxiety, p = .031. No statistically significant between-group differences were detected in family members' secondary outcomes. Conclusion: The intervention had no effect on patients' or family members' self-efficacy but a positive effect on patients' behavioral family function and anxiety. The intervention was deeply affected by the COVID-19 pandemic. Hence, any results should be interpreted with caution.

Exploring the knowledge and skills for effective family caregiving in elderly home care: a qualitative study.

BACKGROUND: Family caregivers play a crucial role in providing physical, emotional, and social support to the elderly, allowing them to maintain their independence and stay in their preferred living environment. However, family caregivers face numerous challenges and require specific knowledge and skills to provide effective care. Therefore, understanding the knowledge and skills required for effective family caregiving in elderly home care is vital to support both the caregivers and the elderly recipients. METHODS: The research was carried out in Mekelle City, Ethiopia, utilizing the phenomenology study design and purposive sampling technique. A total of twenty-two in-depth interviews were conducted. Individuals with experience in providing care for elderly people in their homes were targeted. Data was gathered through the use of an open-ended guide, transcribed word-for-word, inputted into ATLAS.ti8 software, and translated. Codes and themes were then extracted from the transcribed data, and a thematic analysis was performed. To minimize personal biases, the collected data were coded independently by the data collection assistants and the PI. The analysis was carried out by authors who were not involved in the data collection process. The interviews were conducted in a quiet place. RESULTS: A total of 22 in-depth interviews were conducted as part of this research. The results indicated that although the participants had knowledge about common health problems experienced by older people, they were uninformed about how to manage these conditions at home and were unaware of specialized healthcare resources for the elderly. Furthermore, they had limited knowledge about suitable exercise routines, strategies to prevent falls, and home healthcare practices for older individuals. On the other hand, they exhibited a solid comprehension and awareness of abusive behaviors specifically directed at older adults. CONCLUSION: The results emphasized the importance of enhancing education and training for family caregivers in handling elderly health issues, raising awareness about specialized healthcare services catered to the elderly, improving understanding of activities of daily living (ADLs) and fall prevention, and offering inclusive training in healthcare tasks related to elder care. RECOMMENDATION: Participants should receive comprehensive education and training programs to enhance their knowledge and skills in managing these conditions. Efforts should also be made to raise awareness about the availability of geriatric hospitals or specialized nurses for the elderly. Participants need to be educated about suitable exercise routines for the elderly and fall prevention strategies. Healthcare skills training is also necessary for participants, focusing on activities such as wound dressing, vital sign monitoring, and establishing a specific schedule for changing positions.

Cultural Values Influence on Rural Family Caregivers' Decision-Making for Ill Older Adult Loved Ones.

CONTEXT: Rural older adult Americans receive more intense treatment at end of life. Studies indicate that those who participate in goals of care conversations receive care more concordant with their values. Yet, rates of documented goals of care discussions are lower in rural and Black communities. Although multi-factorial, the role that rural family caregivers (FCGs) play in decision-making for ill loved ones is understudied. OBJECTIVE: This study aimed to explore rural FCGs cultural values, beliefs, and attitudes about serious illness and treatment decision-making and to understand how these factors influence their decision-making around goals of care for their family members. METHODS: This is an embedded qualitative study within a tele-palliative care consult randomized trial that the PEN-3 theoretical model guided. Semi-structured interviews were conducted with FCGs who had completed study participation. Thematic analysis was used to analyze the data. RESULTS: Twelve rural FCGs center their decisions around core values, and the decision-making experience was supported by faith. A model of how the key themes and subthemes interact around the central space of supporting the seriously ill loved to demonstrate the complexity of caregiving when race and rurality intersect is presented. CONCLUSION: This study is a foundational step in understanding how rural FCGs beliefs and values influence decision-making. We recommend incorporating those constructs into the development of culturally responsive decision-support interventions.

Family Involvement Training for Staff and Family Caregivers: Case Report on Program Design and Mixed Methods Evaluation.

The COVID-19 pandemic underscored the imperative for meaningful family involvement in long-term care, aligning with policy and safety standards while enhancing outcomes for caregivers, residents, and staff. The objectives of this article are as follows: (1) a case study report on implementing a family involvement intervention designed to facilitate the formal and safe engagement of family caregivers in resident care and (2) the pilot evaluation of the intervention. We used Knapp's six-step implementation science model to guide and describe intervention development to provide insight for others planning family involvement projects. We employed sequential mixed methods, including surveys with quantitative and qualitative questions before and after program implementation for providers, and surveys and interviews with family caregivers a year after. We used the Mann-Whitney U test (p < 0.05) to assess differences in health providers' perceptions pre- and post-education. Families and staff perceived that the Family Involvement Program was important for improving the quality of care, residents' quality of life and family/staff relationships. Providers' perceptions of the program's positive impact on residents' quality of life (p = 0.020) and quality of care (p = 0.010), along with their satisfaction with working relationships with families (p = 0.039), improved significantly after the program. Qualitative data confirmed improvements in family-staff relationships. In conclusion, we documented the design of this family involvement initiative to encourage family caregivers and staff to work together in residents' care. Youville's Family Involvement Program gives families and family caregivers an explicit role as partners in long-term care. The mixed methods pilot evaluation documented improvements in staff and family relationships.

An Intersectional Approach to Understanding the Psychological Health Effects of Combining Work and Parental Caregiving.

OBJECTIVES: Role theory suggests occupying simultaneous family caregiving and employment roles in midlife may exert positive and negative effects on psychological health. However, there is a lack of causal evidence examining the degree to which combinations of these roles influence psychological health at the intersection of gender and racial identity. METHODS: Longitudinal data from the Health and Retirement Study (2004-2018) are used to estimate a series of individual fixed effects models examining combinations of employment status and parental caregiving situation on Center for Epidemiological Studies-Depression Scale (CES-D) depression scores among Black and White men and women aged 50-65. Subsequent models were stratified by intensity of caregiving situation and work schedule. RESULTS: Individual fixed effects models demonstrate combining work, and parental caregiving is associated with greater depressive symptoms than only working, and with lower depressive symptoms than only caregiving, suggesting that paid employment exerts a protective effect on psychological health whereas parental caregiving may be a risk factor for depressive symptoms in later life. Analyses using an intersectional lens found that combining paid work with parental caregiving exerted a protective effect on CES-D scores among White women and men regardless of participants' intensity of care situation or work schedule. This effect was not present for Black men and women. DISCUSSION: Accounting for intersectionality is imperative to research on family caregiving, work, and psychological health.

Development of a short form of the Japanese version of the Caregiver Reaction Assessment (CRA-J-10) among informal caregivers of older adults.

AIM: To support informal caregivers, a simple assessment tool capturing the multidimensional nature of caregiving experiences, including negative and positive aspects, is required. We developed a short form of the Japanese version of the Caregiver Reaction Assessment (CRA-J), a multidimensional assessment scale for caregiver experiences. METHODS: The internet survey involved 934 Japanese informal caregivers aged 20-79 years (mean age = 58.8 years; 50.2% women) who completed questionnaires, including the CRA-J 18 items (CRA-J-18), consisting of five domains, such as impacts on schedule and finances and positive experiences of caregiving. A 10-item short version of the CRA-J (CRA-J-10; 0-50 points), which was prepared by selecting the two items with the highest factor loadings from each domain, was tested for model fit by confirmatory factor analysis (CFA) and was analyzed for correlations with the CRA-J-18, Zarit Burden Interview (ZBI), Positive Aspects of Caregiving Scale (PACS), Patient Health Questionnaire-9 (PHQ-9), and WHO-Five Well-Being Index (WHO-5). The area under the curve (AUC) in the receiver operating characteristic was evaluated as discriminability for depressive symptoms (PHQ-9 ≥ 10 points). RESULTS: The CFA indicated a good model fit in the CRA-J-10. The CRA-J-10 correlated well with the CRA-J-18 and other variables (CRA-J-18, r = 0.970; ZBI, r = 0.747; PACS, r = -0.467; PHQ-9, r = 0.582; WHO-5, r = -0.588) and showed good discriminant performance for the presence of depressive symptoms (AUC = 0.793, 95% confidence interval = 0.762-0.823). CONCLUSIONS: The CRA-J-10 allows a simple assessment of caregiver experiences, helping support informal caregivers. Geriatr Gerontol Int 2024; 24: 290-296.

Increased Care Provision and Caregiver Wellbeing: Moderation by Changes in Social Network Care Provision.

OBJECTIVES: Previous research links increased care provision to worse wellbeing among family and friend caregivers, both before and during the coronavirus disease 2019 (COVID-19) pandemic. We expand on this by incorporating data on caregivers' social networks and exploring the relationships between own and network changes in care during the pandemic and caregiver wellbeing. METHODS: We use nationally representative data from 1,876 family and friend caregivers in the first wave of our Care Network Connections over Time study (fielded 12/17/2020-1/4/2021) who had provided care continuously since before the COVID-19 pandemic began. Caregivers were asked about the amount of care that they and each member of their social networks were providing at the time of the survey relative to before the pandemic. We use multivariate regression models to examine the associations between five caregiver wellbeing outcomes and changes in care, and explore the moderating role of networks' changes in care. RESULTS: Among caregivers who had provided care since prior to the pandemic, most increased (42.0%) or maintained the same (40.8%) care. Their networks also typically increased (33.4%) or maintained (46.5%) care. Increasing one's own care provision was associated with higher levels of anxiety, depression, loneliness, and emotional difficulty than maintaining stable care. Among those who increased care, these levels were highest when the network also increased or decreased care. DISCUSSION: Increased care provision was most strongly associated with poor caregiver wellbeing in contexts where caregivers' social networks also changed care provisions. Supports for caregivers undertaking additional care tasks should take into account caregivers' networks.