Capturing the perspectives of African American informal dementia caregivers: a phenomenological study.

Dementia can be overwhelming to families and their caregivers. Informal caregiving is a widespread mode of providing dementia care in African American communities, yet impact of caregiving on informal or family caregivers in African American communities is burdensome. This study aimed to describe the lived experiences of informal caregivers of African American People Living with Dementia (PLWD) to understand their perceptions of dementia and dementia care, caregiver support needs, and service needs. Interpretive phenomenological qualitative inquiry guided this study to understand caregivers' experiences and needs. Ten family caregivers of African American PLWD in the community participated in this study. Data were collected through in-depth interviews and a diary study approach to document and interpret caregivers' experiences. The data analysis was based on procedures of content analysis. Four major themes emerged from the in-depth interviews: caregiver burden, familism, lack of information and community-based resources, and desire and need for culturally appropriate community-based resources. Triangulated diary entry data complemented the in-depth interviews with similar themes. This study highlights how African American informal caregivers of PLWD face various caregiving needs and challenges in dementia care including lack of culturally appropriate community resources and information. The study illustrates that African American cultural beliefs of familism are significant aspects of their caregiving experience and their coping strategies. These study results provide a useful foundation for various stakeholders to develop culturally targeted interventions and programs to support African American informal caregivers and their family members with dementia.

Assessing Culturally Tailored Dementia Interventions to Support Informal Caregivers of People Living with Dementia (PLWD): A Scoping Review.

The review aimed to identify and describe dementia care interventions and programs that are culturally tailored to support racial and ethnic minority informal caregivers of community-dwelling people living with dementia (PLWD) to identify gaps in need. Culturally targeted interventions to support vulnerable minority informal caregivers are important in addressing the care needs of PLWD and eliminating racial and ethnic dementia disparities. Nevertheless, little is known about the existing interventions and programs that are culturally tailored to support racial and ethnic minority groups, in particular, African-American caregivers in the care of their family members. We conducted a Scoping review, searching eight databases including MEDLINE, EMBASE, APA PsycINFO, CINAHL, PUBMED, Scopus, and Web of Science between January 2012 and June 2022. Our search identified 2669 records, of which 17 articles were included in the analysis. The review addressed how these interventions have been developed to meet the needs and preferences of minority caregivers, particularly, African-American caregivers in culturally responsive ways. Findings show that culturally tailored interventions have the potential to improve the caregiving ability of informal caregivers. Supporting informal caregivers appears to be an effective strategy often improving the well-being of PLWD and reducing caregiver burden. The review demonstrates the paucity and diversity of research on culturally tailored dementia interventions to reduce racial and ethnic disparities. This scoping review identified gaps in the existing literature and aims for future work to develop and investigate cultural tailoring of interventions.

Rural Native Veterans' Perceptions of Care in the Context of Navigator Program Development.

INTRODUCTION: American Indian and Alaska Natives serve in the military at one of the highest rates of all racial and ethnic groups. For Veterans, the already significant healthcare disparities Natives experience are aggravated by barriers to accessing care, care navigation, and coordination of health care within the Veterans Health Administration (VHA) between the VHA and tribal health systems. To mitigate these barriers, the VHA is developing a patient navigation program designed specifically for rural Native Veterans. We describe formative work aimed at understanding and addressing barriers to VHA care from the perspective of rural Native Veterans and those who facilitate their care. METHODS: Thirty-four individuals participated in semi-structured interviews (22 Veterans, 6 family members, and 6 Veteran advocates) drawn from 9 tribal communities across the US. RESULTS: Participants described many barriers to using the VHA, including perceptions of care scarcity, long travel distances to the VHA, high travel costs, and bureaucratic barriers including poor customer service, scheduling issues, and long waits for appointments. Many Veterans preferred IHS/tribal health care over the VHA due to its proximity, simplicity, ease of use, and quality. CONCLUSION: Rural Native Veterans must see a clear benefit to using the VHA given the many obstacles to its use. Veteran recommendations for addressing barriers to VHA care within a navigation program include assistance enrolling in, scheduling, and navigating VHA systems; paperwork assistance; cost reimbursement; and care coordination with the IHS/tribal health care.

An age-friendly approach to primary care in an academic health system.

BACKGROUND: Age-friendly care, addressing what matters most, medications, mentation, and mobility, is a successful model for improving older adult care. We describe the initial outcomes of age-friendly care implementation in five primary care clinics in an academic health system. METHODS: In partnership with a regional quality improvement (QI) organization, we used practice facilitation to implement age-friendly care from July 2020 to June 2023. Clinic workflows and electronic health record (EHR) templates were modified to capture six QI measures for patients ≥65 years: Documenting what matters most to patients Advance care planning (ACP) Annual cognitive screening Caregiver referral to dementia community resources Fall-risk screening Co-prescription of opioid and sedative-hypnotic drugs Providers were alerted if patients had positive screens and given support tools for clinical decision-making. QI measures from January-June 2023 were compared to the year prior to implementation. Providers and staff were interviewed about implementation barriers and facilitators. RESULTS: All six measures improved in Geriatrics and and other clinics showed improvement in ACP and cognitive screening. All clinics had high fall-risk screening rates (≥85%). The least improved measure was co-prescription of opioids and sedative-hypnotics with co-prescription rates ranging from 7% to 39%. Implementation hinged on leadership prioritization, practice facilitator guidance, clinical team buy-in, EHR functionality, and clinical performance review. Three clinics received Age-Friendly Health System recognition. CONCLUSIONS: A QI approach using practice facilitation and EHR templates improved some but not all age-friendly care measures. Future interventions will focus on training in high-risk medication tapering and elicitation of health goals.

Tribal Perspectives on Patient Navigation for Rural Native Veterans Using Veteran Health Administration Services.

American Indian and Alaska Native (Native) Veterans enrolled in the U.S. Department of Veterans Affairs (VA) benefits program are far less likely to access health care compared to other racial/ethnic groups, in part driven by challenges posed by often distant, complex, and culturally unresponsive health care that does not easily interface with the Indian Health Service (IHS) and local Tribal Health Care. To address this disparity, in 2020 the Veteran's Health Administration's (VHA) Office of Rural Health (ORH) initiated the development of a patient navigation program designed specifically for rural Native Veterans. There are no navigation programs for rural Native Veterans to guide development of such a program. Hence, the project team sought perspectives from rural Native Veterans, their families, and community advocates, (n = 34), via video and phone interviews about the role and functions of a Veteran patient navigator and personal characteristics best be suited for such a position. Participants believed a navigator program would be useful in assisting rural Native Veterans to access VHA care. They emphasized the importance of empathy, support, knowledge of local culture, and of Veteran experience within tribal communities, adeptness with VHA systems, and personnel consistency. These insights are critical to create a program capable of increasing rural Native Veteran access to VHA services.

Describing providers' perspectives on the needs and challenges of family caregivers of African American people living with dementia.

The primary purpose of this study was to explore the needs and challenges of African American family caregivers of People living with dementia (PLWD) from the perspective of service providers including healthcare and social service providers. The study conducted three online semi-structured focus group interviews with service providers (n = 15). Data were analyzed using Braun & Clarke's guide to thematic analysis approach. Five themes emerged from the analysis of the focus group data: (i) Inadequate information about resources; (ii) Dementia education; (iii) Burden of dementia on families; (iv) Limited financial support and funding; and (v) Suggestions for needed resources. Service providers expressed the lack of community-based dementia service and support programs in African American communities. Findings from the study indicated the need to provide culturally appropriate information on dementia caregiving. This study adds to the scope of knowledge by exploring the processes of seeking help and using services.