How do family caregivers of older adults cope with relationship strain?

OBJECTIVE: Studies of families' experiences with caregiving to older adults most often focus on overall burden and stress. Yet, caregiving is also a type of relationship, and the onset of caregiving can contribute to relationship strain between care partners. Despite implications for both care partners, little is known about how caregivers cope with caregiving relationship strain. METHODS: The authors conducted nine focus groups and 8 interviews with a purposeful sample of racially and ethnically diverse family caregivers in Los Angeles. Conventional content analysis was applied to transcripts to identify how caregivers cope with relationship strain. RESULTS: Analyses revealed four overall coping approaches to manage relationship strain: (1) Self-Care; (2) Adapting Behaviors, (3) Adapting Feelings and Cognitions, and (4) Help and Support. Selected strategies likely vary by care recipient condition. For example, caregivers for persons living with dementia emphasize adapting their own behaviors and feelings, rather than trying to change their loved one's behaviors. CONCLUSIONS: Findings suggest that caregivers cope with relationship strain using both interpersonal tension and care management strategies. We also identified possible variations by care recipient condition and caregiver race and ethnicity. These results suggest a need for interventions focused on caregiver coping should also be tested for effects on relationship strain.

A Community Initiative to Engage Employers to Support Caregiving Employees and Build an Advocacy Alliance.

Family caregivers to persons living with a chronic or disabling condition often report disruption to their employment. Employment disruption can cause long-term financial difficulty and psychological distress for caregivers, high costs for employers, and exacerbates social inequities. In this commentary, we describe a community initiative to better support employees who are caregivers conducted with nonprofit employers in San Antonio, located in the central Texas region of the United States. This initiative aimed to raise awareness among local employers about the challenges employees face in balancing employment and caregiving. This led to the co-development of a pledge to guide employer efforts to support employees who are caregivers. This initiative represents a first step to mobilize employers as stakeholder allies to improve workplace support for family caregivers. The authors draw on the Shilton Model of Policy Advocacy to make the case that the mobilization of employers as advocacy stakeholders can hasten the advancement of policies that enable family caregivers to balance both roles. Further, the implementation of organization-level changes, in addition to state and federal policy changes, to support employed caregivers by employers is consistent with recommendations of the recently published National Strategy to Support Family Caregivers.

Unmet needs and health-related quality of life of dementia family caregivers transitioning from home to long-term care: A scoping review.

This scoping review is to identify experiences, unmet needs, and health-related quality of life (HRQoL) of family caregivers transitioning their care recipients with dementia into long-term care (LTC). The methodological framework of Arksey and O'Malley guided the review. Themes from nineteen selected studies were organized around three categories. First, caregiver experiences during LTC placement featured challenges around placement decision-making and distress and changes in relationships and responsibilities. Second, unmet needs of caregivers were desired emotional support and information about transitions. Finally, caregivers' HRQoL varies around transition. Family caregivers experience unique challenges and can have unmet needs during the LTC placement of their care recipients with dementia. Findings suggest the need for interventions that teach skills, care planning, assistance with conflict resolution, communication training, and guidance finding services and resources.

Family caregivers' perceptions and experiences of participating in the learning skills together intervention to build self-efficacy for providing complex care.

The purpose of this study was to describe how an intervention to teach family caregivers of persons living with dementia to provide complex care tasks contributes to their self-efficacy. This qualitative study was embedded in a pilot study evaluating the intervention. Semi-structured interviews were conducted with 15 caregivers who had completed the intervention. Content analysis was used to analyze the data. Themes identified from the interviews were: "helpfulness of the content", "if they can do it, so can I", and "applying what I have learned". Caregivers described the helpfulness of learning from expert healthcare professionals in a supportive environment. They valued the group setting, including interacting with and learning from their peers. Caregivers demonstrated mastery of the content by applying it to their caregiving situations and sharing information with other family members. These findings provide insights into successful elements in a complex care intervention that contributed to building caregiver self-efficacy.

Caregiver self-efficacy improves following complex care training: Results from the Learning Skills Together pilot study.

Family caregivers to persons living with dementia increasingly provide complex care tasks, though most (53%) do so without any training. "Complex care" includes medical/nursing tasks, as well as personal care tasks that require disease knowledge. Of the 67% of dementia caregivers who provide complex care, nearly half worry about making a mistake. To help caregivers feel more confident when providing complex care tasks, we developed and conducted a pilot study of the 4-week Learning Skills Together psychoeducation program (LST; N=35). Participants in LST reported high satisfaction with the program and found the information shared about complex care was easy to understand. Pre- and post-test data demonstrated improvements in mean caregiver self-efficacy at both 4-weeks and 8-weeks post-intervention (mean difference (MD)=1.0, SD= 1.6, p-value=0.004 and MD= 1.0, SD=2.2, p-value=0.038, respectively). Results demonstrate the potential for a brief psychoeducational program to prepare caregivers to provide complex care to persons living with dementia.

Simulation learning to train healthcare students in person-centered dementia care.

In coming decades, healthcare providers will treat a greater number of individuals living with Alzheimer's Disease and related dementias than ever. Simulation-based learning provides experiential learning opportunities to enhance clinical training, but little is known about how dementia simulation training improves understanding of dementia or how it changes in participants' ability to deliver high-quality healthcare to individuals living with dementia. In this study, we examine how a simulation training program may prepare healthcare trainees to treat individuals living with dementia. We conducted eight in-depth, one-on-one interviews with healthcare trainees who participated in the Virtual Dementia Tour (VDT) program and faculty who added VDT to their curricula, and also examined 20 reflection papers from students following participation in VDT. A thematic analysis of qualitative data led us to three themes: 1) dementia simulation complements and enhances traditional teaching methods, 2) dementia simulation helps students to understand the experiences of people living with dementia, and 3) experiential learning inspired students to reflect on actions they would take as clinicians and leaders to support individuals living with dementia and their families. Based on these findings, we propose a modified transformative learning process for dementia simulation training with healthcare students.

Conceptualizing How Caregiving Relationships Connect to Quality of Family Caregiving within the Stress Process Model.

Family caregivers provide the majority of care for older and disabled family members living with an illness or disability. Although most caregivers want to provide high-quality care, many report providing care that is potentially harmful. We apply the Stress Process Model to review the preponderance of literature implicating quality of the relationship between caregivers and care recipients as a factor contributing to quality of family caregiving. In drawing together literature on caregiving relationships and caregiving quality, this commentary identifies potentially modifiable intervention targets to develop programs to support high-quality caregiving to older adults living with a chronic illness or disability.

The relationship between perceived support and depression in spousal care partners: a dyadic approach.

OBJECTIVES: Caregiving within a spousal partnership marks a novel relationship stage for couples. Caregiving introduces new stressors and affects couples' ability to cope, and potentially alters perceptions of emotional support. Prior research on older married couples illustrates how perceived support not only affects an individual's mental health, but also that of their partner. To date, the dyadic relationship between emotional support and mental health is largely unexamined among caregiving partners, where support expectations may differ. METHOD: Actor partner interdependence models using linear mixed modeling were applied to data from spouses where one partner received caregiving within the 2014 and 2016 waves of the Health and Retirement Study. We examined the cross-sectional and lagged associations between perceived emotional support and strain from a spouse on actor and partner depression scores, as well as whether one was the caregiver or the care recipient moderated associations. RESULTS: More positive perceptions of support were associated with lower depression scores for oneself (b= -0.55, p < 0.001) and one's partner (b= -0.24, p < 0.001). Actor effects-how one's own perceptions of support associate with one's own depressive symptomology-were stronger for care recipients than for caregivers (b= -0.83, p < 0.001 v. b= -0.26, p < 0.05). Higher perceptions of strain were also associated with higher depression scores for oneself (b = 0.57, p < 0.001) and one's partner (b = 0.39, p < 0.001), associations that remained even in lagged models. CONCLUSIONS: The observation of both actor and partner effects in this study suggests opportunities to improve care recipient outcomes through intervention with caregivers or both members of the care dyad.

Assessing acceptability and patient experience of a behavioral lifestyle intervention using fitbit technology in older adults to manage type 2 diabetes amid COVID-19 pandemic: A focus group study.

Type 2 diabetes (T2D) contributes to reduced quality of life in older adults, especially in those with comorbidities such as being overweight or obese. Personal fitness technology (Fitbit ®) has the potential to improve the management of T2D. Using a semi-structured interview guide, focus groups were conducted to explore participants' acceptability and experiences following a behavioral lifestyle intervention that integrated Fitbit in overweight/obese older adults with T2D amid the COVID-19 pandemic which began during the time of this study. Focus group transcripts were transcribed and analyzed using thematic analysis. Eighteen (18) of the 20 participants completed the program and focus group interviews. Overall, we observed high acceptability of the program, and participants reported favorable experiences such as increased knowledge of health behaviors, improved diabetes management, and improved quality of life following the behavioral lifestyle intervention, even under stressful life circumstances from COVID-19.

Looking Back to Move Forward: The Value of Reflexive Journaling for Novice Researchers.

For novice qualitative researchers, each encounter in the field yields a ream of questions and uncertainties. While fieldwork has inherent ambiguities for all researchers, novice researchers have less experience on which to draw to assess their interactions with participants. Adding to this uncertainty, gerontological fieldwork is frequently imbued by age-and cohort-related nuances, characteristics which new researchers often do not share with participants. It is also not uncommon for new researchers to work primarily alone on projects, such as dissertations and theses. Mentors and academic advisors can help examine research encounters, however advice may be most constructive following engagement in reflexive exercises. We discuss the benefits of using reflexive journaling to assist with answering the many questions generated while conducting qualitative interviews during a study with family carers. Advisors should consider encouraging the use of reflexive journaling to help novices grow as researchers.

What Are Strategies to Advance Policies Supporting Family Caregivers? Promising Approaches From a Statewide Task Force.

Family caregivers are the cornerstone of the long-term supports and services infrastructure in the United States, yet they often contend with many challenges related to this role. Public policy has been slow to change, leaving many caregivers vulnerable to health and economic consequences. Using models of policy making, we identify barriers to advancing policies that support family caregivers and overcome policy drift. We draw on discussions from the California Task Force on Family Caregiving as it prepares state policy recommendations. Identified strategies include identification of caregivers in health care and workplace settings to promote political consciousness raising, collecting and reporting on data that frame caregiving as a policy problem, borrowing policies and language from overlapping fields to emulate their policy successes, and presenting supportive caregiver policies as solutions to other policy problems. By presenting specific strategic approaches to advance caregiving policies, we provide tools to address the growing gap between caregiver needs and policy responses.

"I Lay Awake at Night": Latino Family Caregivers' Experiences Covering Out-of-Pocket Costs When Caring for Someone Living With Dementia.

BACKGROUND AND OBJECTIVES: The financial burden of caregiving has received less research attention than physical and emotional costs. This is especially true for underserved ethnic minorities. Financial strain affects mental and physical health and is unequally distributed across caregivers of different races and ethnicities. Although caregivers overall spend, on average, one quarter of their income on caregiving, Latino caregivers, the focus of this study, spend nearly half. RESEARCH DESIGN AND METHODS: To better understand this disparity, we conducted 11 qualitative interviews with 14 Latino caregivers of persons living with dementia located in either California or Texas. Interview transcripts were thematically coded, guided by a material-psychosocial-behavioral conceptual model of financial strain. RESULTS: We identified 3 themes: daily needs and costs, psychological distress caused by financial issues, and stressful barriers to accessing family and societal support. Furthermore, interviews revealed how Latino culture may influence spending patterns and management of costs. Findings suggest that preference by Latino families to care for a family member in the home may be met with a financial disadvantage due to the high out-of-pocket costs of care. DISCUSSION AND IMPLICATIONS: A better understanding of the factors contributing to high costs for Latino caregivers and how these costs affect caregivers will inform approaches at both the individual and policy levels and develop culturally relevant interventions to help Latino families to lower caregiving costs. This is especially important as the number of Latinos living with dementia is expected to increase over the next 4 decades and effective interventions are lacking.

Thematic Analysis of Alzheimer's Medication Management Discussion in a Non-Moderated Online Forum.

BACKGROUND: Managing medications for Alzheimer's disease and related dementias is challenging for caregivers. Information about caregivers' strategies to manage these challenges is needed to inform intervention development. OBJECTIVE: This study aimed to understand caregivers' medication management experiences by analyzing online community discussions. METHODS: Posts were extracted from the ALZConnected® Forum using keywords "medication" and "drug" via web scraping. The researchers applied thematic analysis. RESULTS: Four major themes emerged: (1) role transition of medication management responsibilities, (2) caregivers' uncertainty about medication purpose and values, (3) conflicts between the care recipients and caregivers, and (4) difficulty accessing and affording medications. CONCLUSIONS: The experiences shared on a non-moderated, unstructured online forum indicate that medication management is challenging and overwhelming for caregivers of people living with Alzheimer's disease and related dementias. Since this is a progressive disease with various stages and changing needs, caregivers' strategies vary and are often limited by available resources and support. Health care providers should offer training and support for caregivers to navigate the transfer of medication management responsibilities and changing care needs as the disease progresses.

Comprehensive Older Adult and Caregiver Help (COACH): A person-centered caregiver intervention prevents elder mistreatment.

BACKGROUND: Elder mistreatment (EM) harms individuals, families, communities, and society as a whole. Yet research on interventions is lagging, and no rigorous studies demonstrating effective prevention have been published. This pilot study examines whether a first-of-its-kind coaching intervention reduced the experience of EM among older adults with chronic health conditions, including dementia. METHODS: We used a double-blind, randomized controlled trial to test a strengths-based person-centered caregiver support intervention, developed from evidence-based approaches used in other types of family violence. Participants (n = 80), family caregivers of older adults who were members of Kaiser Permanente, completed surveys at baseline, post-test, and 3-month follow-up. The primary outcome was caregiver-reported EM; additional proximal outcomes were caregiver burden, quality-of-life, anxiety, and depression. Nonparametric tests (Mann-Whitney U, Fisher's Exact, Wilcoxon Signed Rank, and McNemar's) were used to make comparisons between treatment and control groups and across time points. RESULTS: The treatment group had no EM after intervention completion (assessed at 3-month follow-up), a significantly lower rate than the control group (treatment = 0%, control = 23.1%, p = 0.010). CONCLUSIONS: In this pilot study, we found that the COACH caregiver support intervention successfully reduced EM of persons living with chronic illness, including dementia. Next steps will include: (1) testing the intervention's mechanism in a fully powered RCT and (2) scaling the intervention for testing in a variety of care delivery systems.

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.

Qualitative Evaluation of Family Caregivers' Experiences Participating in Knowledge and Interpersonal Skills to Develop Exemplary Relationships (KINDER): Web-Based Intervention to Improve Relationship Quality.

BACKGROUND: The onset of Alzheimer disease and related dementias (AD/ADRD) can alter relationships between family caregivers and persons living with AD/ADRD, such as through the occurrence of distressful behavioral and psychological symptoms of dementia. Poorly perceived relationship quality by caregivers contributes to negative outcomes for both care partners, such as low-quality caregiving and potential mistreatment of older adults. Knowledge and Interpersonal Skills to Develop Exemplary Relationships (KINDER) is a new, web-based, asynchronous psychoeducational intervention with content informed by focus groups with family caregivers. The program was developed to prevent low-quality caregiving and potential mistreatment of older adults by focusing on building healthy caregiving relationships. OBJECTIVE: The purpose of this study is to describe caregivers' experiences participating in KINDER to understand intervention acceptability. Of particular interest was learning how comfortable caregivers were viewing content addressing potential mistreatment, as well as whether asynchronous delivery created any barriers to participating in the intervention. Findings will inform future program refinements before efficacy testing. METHODS: Although 23 caregivers enrolled in the KINDER parent study, only 7 of them completed the 8-week intervention. In-depth, semistructured qualitative interviews were conducted with all participants who completed the program to understand their experiences while attending KINDER and to decipher barriers to participation. We also asked participants about which program elements were most valuable and which were least valuable to them, as well as how the program could be improved. Interview transcripts were analyzed by 2 coders using thematic analysis. RESULTS: Our findings indicate that caregivers were overall satisfied with KINDER's focus and content. Participants particularly liked how KINDER materials felt authentic and relevant to supporting healthy care relationships (Theme 1). The program's multiple components were found to be valuable, especially story-based video vignettes and readings (Theme 2). Most caregivers were comfortable viewing depictions of mistreatment and understood the importance of this content (Theme 3). Notably, while caregivers appreciated the convenience of participating in an asynchronous web-based intervention, several expressed a desire for more opportunities to speak with other caregivers (Theme 4). Technology challenges, such as a lack of clarity about automated intervention activities, deterred completion. CONCLUSIONS: Findings from this study suggest an asynchronous web-based intervention covering sensitive topics such as mistreatment is acceptable for at least some AD/ADRD caregivers. Caregivers' comments that materials felt authentic may suggest that the integration of caregiver voices before intervention development enhanced the relevance of content. To make KINDER easier to deliver and participate in, the investigators plan to reduce the use of automation and integrate more group-based programming, as recommended by participants. Further, given the higher-than-expected dropout rate, in future studies, the investigators will collect data to determine the reasons for participants not completing study activities.

Social Activity Restriction and Psychological Health Among Caregivers of Older Adults With and Without Dementia.

OBJECTIVES: We examined associations between social activity restriction and psychological distress and well-being for caregivers of older adults with and without dementia, and if the identified associations are different for the two groups. METHODS: Using data from the 2017 National Study of Caregiving, we identified caregivers of older adults with (N = 541) and without (N = 1701) dementia. Linear regression models were estimated, adjusting for caregivers' age, gender, race, education, relationship to care recipient, and self-rated health. RESULTS: Restriction in visiting friends and family and attending religious services were associated with higher distress in dementia caregivers. Restriction in visiting friends and family was associated with higher distress and lower well-being in non-dementia caregivers. Any activity restriction had stronger association with distress for caregivers of older adults with versus without dementia. DISCUSSION: Findings highlight the need for tailored interventions based on caregivers' perceptions of meaningful social activities and dementia-friendly communities to promote social participation.

The Differential Effects of Caregiving Intensity on Overnight Hospitalization.

This study aims to examine how caregiving for a spouse affects caregivers' likelihood of overnight hospitalization. Using data from the Health and Retirement Study, we examine the odds of spousal caregivers experiencing an overnight hospitalization in the previous two years according to caregiving status, intensity, and change in caregiving intensity. Caregivers were no more likely to experience an overnight hospitalization than noncaregivers (OR = .92; CI [.84, 1.00]). Effects varied by intensity of care. Compared to noncaregivers, caregivers who reported providing no assistance with activities of daily living were less likely to experience overnight hospitalization (OR = .77; CI [.66, .89]); however, caregivers who provided care to someone living with dementia for 4 to <6 years had 2.11 times the odds of experiencing an overnight hospitalization (CI [1.16, 3.85]). Although caregivers overall experience overnight hospitalization at a similar rate as noncaregivers, there are differences between caregivers by the intensity of care.

A Multiple Stakeholder Perspective on the Impact of COVID-19 on Dementia Care.

The aim of this study was to describe the impact of the COVID-19 pandemic on dementia care from a multiple stakeholder perspective. We used a multi-method design, with a cross-sectional survey followed by focus groups/interviews. Surveys were completed by people living with dementia (n = 27), family caregivers (n = 161), and health and social care professionals (n = 77). A sub-sample (n = 55) participated in an interview or one of 9 focus groups. Surveys were analyzed with descriptive statistics and focus group/interview data were analyzed using a thematic approach. Participants reported an impact of COVID-19 on dementia care, including less access to care and resources for care. Telehealth and tele-support/education were reported to be effective alternatives to support care. Themes from the qualitative data about dementia care were: (1) planning and providing care, (2) making choices around risk and safety, (3) experiences of loss, and (4) technology and dementia care. The results of this study present opportunities to improve the quality of care through addressing inequities and identifying improved and innovative approaches to address social isolation and virtual care for this vulnerable population.