Diverse rural caregivers for individuals with Alzheimer's disease or related dementias: analysis of health factors at the individual, interpersonal, and community level.

Objectives: Approximately 6.2 million Americans aged 65 or older have Alzheimer's disease or related dementias (ADRD). Unpaid family members and friends provide the bulk of caregiving for these individuals. Caregiving in rural areas adds unique challenges, particularly for ethnically/racially diverse caregivers. This study provides a profile of diverse, rural ADRD caregivers with an emphasis on multi-level factors that influence physical and mental health.Methods: A cross-sectional survey was conducted with 156 diverse rural ADRD caregivers.Results: 65% of participants identified as White/Non-Hispanic (WNH; n = 101) and 35% identified as ethnically/racially diverse (ERD; n = 55). The majority of participants reported economic deprivation. More ERD caregivers were uninsured and had at least one chronic health condition. Higher proportions of ERD caregivers smoked cigarettes, consumed alcohol regularly, and had not seen or talked to a doctor in the previous year. There were no ethnic/racial group differences in stress, anxiety, depressive symptoms, subjective health, or sleep quality.Conclusion: Rural caregivers, regardless of ethnicity/race, may benefit from extra supports in order to maintain optimal health. Further research is needed to disentangle the complex relationship between culture, caregiving, and health.

A systematic review of psychosocial interventions for Latinx and American Indian patient-family caregiver dyads coping with chronic health conditions.

Latinx and American Indians experience high rates of chronic health conditions. Family members play a significant role as informal caregivers for loved ones with chronic conditions and both patients and family caregivers report poor psychosocial outcomes. This systematic review synthesizes published studies about psychosocial interventions for Latinx and American Indian care dyads to determine: (i) the benefits of these interventions; (ii) their distinguishing features or adaptations, and; (iii) recommendations for future intervention development. Out of 366 records identified, seven studies met inclusion criteria. Interventions demonstrated benefits to outcomes such as disease knowledge, caregiver self-efficacy and burden, patient and caregiver well-being, symptom distress, anxiety and depression, and dyadic communication. Distinguishing features included tailoring to cultural values, beliefs, and delivery preferences, participants' level of acculturation, and population-specific issues such as migratory stressors and support networks. Based upon this review, six recommendations for future intervention development are put forth.

Development and Validation of a Community Assessment Survey for Diverse Rural Family Caregivers of People With Alzheimer Disease and Related Dementias.

Many individuals with Alzheimer disease and related dementias receive care from family members and friends. Rurality adds increased complexity to care, especially for diverse caregivers. This study details the development and content validation process for a community assessment survey for rural white, Latinx, and American Indian/Alaska Native Alzheimer disease and related dementias caregivers. Foundational survey items were based upon instruments validated with diverse rural caregivers. A modified Delphi process (2 rounds) was used to refine items. The process concluded when 75%+ of experts agreed that the survey was (1) inclusive of different cultural groups; (2) respectful of cultural values and norms; (3) comprehensive with respect to needs, assets, and resources, and (4) relevant to the experiences of diverse rural caregivers. Round 1 of the process (N = 9 panelists) resulted in the elimination of 2 survey sections, a greater focus on issues including transportation and roles of extended family members, and the inclusion of open-ended questions. Round 2 (N = 6 panelists) resulted in further improvements, particularly to the sections about cultural customs, beliefs, and traditions and interactions with health care and other providers. Benefits of the process included raising awareness about rural caregiving issues and maximizing data quality. Challenges included honoring the diversity of respondents' opinions and balancing research rigor with community utility. This community assessment survey may help researchers better understand the needs and culturally-based strengths of diverse rural family caregivers.

Development and validation of a quality of relationship intervention for stroke survivor-family caregiver dyads.

Background: The relationship between stroke survivors and family caregivers is critical for the well-being of both dyad members. Currently, there are few interventions targeted at dyads and focused on strengthening the relationship between survivors and family caregivers.Objectives: This study reports on the development of a customizable, strengths-based, relationship-focused intervention driven by the real-world experience and advice of stroke dyads. It also describes the "tips" that survivors and family caregivers offered for dealing with relationship challenges after stroke.Methods: Content of the intervention, including relationship tips, was derived from semi-structured interviews with N= 19 stroke dyads. A modified Delphi process with a national panel of 10 subject matter experts was used to evaluate and refine the content of the intervention and the associated screening tool.Results: Seventeen domains of relationship challenges and tips were identified. Consensus was reached among experts that the intervention content was relevant to the goal of helping survivors and family caregivers maintain a strong relationship after stroke; (2) clear from the perspective of stroke survivors and family caregivers who would be using it; (3) accurate with respect to the advice being offered, and; (4) useful for helping stroke survivors and family caregivers improve the quality of their relationship.Conclusions: This study extends the limited body of research about dyadic interventions after stroke. The next steps in this line of research include feasibility testing the intervention and evaluating its efficacy in a larger trial.