"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.

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.

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.

The Living Alone with Cognitive Impairment Project's Policy Advisory Group on Long-Term Services and Supports: Setting a Research Equity Agenda.

(1) Background: A United States national policy advisory group (PAG) was convened to identify barriers and facilitators to expand formal long-term services and support (LTSS) for people living alone with cognitive impairment (PLACI), with a focus on equitable access among diverse older adults. The PAG's insights will inform the research activities of the Living Alone with Cognitive Impairment Project, which is aimed at ensuring the equitable treatment of PLACI. (2) Methods: The PAG identified barriers and facilitators of providing effective and culturally relevant LTSS to PLACI via one-on-one meetings with researchers, followed by professionally facilitated discussions among themselves. (3) Results: The PAG identified three factors that were relevant to providing effective and culturally relevant LTSS to PLACI: (i) better characterization of PLACI, (ii) leveraging the diagnosis of cognitive impairment, and (iii) expanding and enhancing services. For each factor, the PAG identified barriers and facilitators, as well as directions for future research. (4) Conclusions: The barriers and facilitators the PAG identified inform an equity research agenda that will help inform policy change.

What Are the Characteristics of Caregivers Logging in for Support Services?

BACKGROUND AND OBJECTIVES: Online service delivery options have the potential to increase access to informational resources among caregivers to older adults. However, it is unknown which caregivers will use online-delivered services over usual service delivery modes (e.g., by phone) when both options are available in social service settings. This is important for service providers to know when making decisions that best serve their communities. RESEARCH DESIGN AND METHODS: Guided by Andersen's model of health service utilization, we used step-wise logistic regression models to compare the characteristics of caregivers who used an online information service called FCA CareJourney (FCA CJ) with those who accessed the same services using the usual mode of service delivery (N = 540). Online and usual-care services were available through two social service organizations in California. RESULTS: In all, 13.7% of clients used FCA CJ to receive services online. Enabling characteristics were the main predictors of using online-delivered services. Caregivers employed part-time had 3.82 times the odds of using online-delivered services compared to those employed full-time (odds ratio [OR] = 3.82; 95% confidence interval [CI]: 1.58-9.22). Caregivers who learned about services from health care providers had 2.91 times the odds of using FCA CJ as those who learned about services through social services (OR = 2.91; 95% CI: 1.28-6.62). Even among those who learned about services online, 62.2% still accessed services using usual delivery modes. DISCUSSION AND IMPLICATIONS: Based on differences in the characteristics of caregivers using different service delivery modes and the low uptake of online-delivered services, we suggest online service delivery should supplement, not replace, usual delivery modes in social service settings. At the same time, user rates of online service delivery are likely modifiable. Given the potential for online-delivered programming to expand access to information services for caregivers, we recommend further examination into the effects of marketing online service delivery options to caregivers in novel ways.