CommunityRx: Optimizing a Community Resource Referral Intervention for Minority Dementia Caregivers

Abstract

Community resource referral systems have been implemented into care settings that serve persons with dementia but with little input from caregivers. Focus groups were conducted with African American, Hispanic, and Asian caregivers to describe their preferences for community resource referral information. Caregivers discussed the significance of a community resource list for dementia caregiving and self-care and articulated strategies for effective information delivery during a medical visit. Most caregivers acknowledged that resource needs change with progression of dementia, but no patterns emerged with regard to preference for information delivered incrementally based on disease stage or all at once. Hispanic and Asian caregivers felt that resource information should specify service providers’ language and cultural capabilities. All caregivers agreed that delivery by a member of the care team with knowledge of dementia-specific resources would be most effective. Optimal delivery of community resource referrals is caregiver-centered and customizable to individual and subgroup preferences.

Cultural and Social Factors in Care Delivery Among African American Caregivers of Persons With Dementia: A Scoping Review

“…A majority of studies reported on the influence of social support and religious groups (peer groups, social groups, community, and environmental groups, social supports, behavioral manifestations, social resources, social supports, behavioral manifestations, social engagement, extensive social network, monthly social contact, social determinants of health, and health outcomes) for older adults during the COVID19 pandemic (Alexander et al, 2022; Disbrow et al, 2021; Fabius et al, 2020; Lampe et al, 2022; Liu et al, 2021; McLennon et al, 2020; Oliver et al, 2022; Pereira et al, 2022; Pettigrew et al, 2020; Scott et al, 2020; Sloan et al, 2022; Tan et al, 2021). Other studies (Abramsohn et al, 2022; Brewster, Bonds, et al, 2020; Brewster, Epps, et al, 2020; Cothran, Chang, et al, 2022; Cothran, Paun, et al, 2022; McLennon et al, 2020; Xu et al, 2021) reported on the influence of cultural factors in care delivery among African American caregivers of persons with dementia, while others discussed the combined effect of both cultural and social factors.…”

“…The themes included a theoretical model within a cultural context, with the perception of caregiving as an expected role. In addition, the analysis included the perceived substantial familial obligations, cultural responsiveness, enabling circumstances, and need factors for both discretionary and non-discretionary service utilization, such as culturally specific meals and resources and culturally appropriate Alzheimer’s disease education and information (Abramsohn et al, 2022; Bonds Johnson et al, 2022; Bonner et al, 2021; Brewster, Bonds, et al, 2020; Brewster, Epps, et al, 2020; Hansen et al, 2020; Pereira et al, 2022; Pettigrew et al, 2020; Sloan et al, 2022; Xu et al, 2021). Fewer studies discussed the combined influence of sociocultural factors (Cothran, Chang, et al, 2022; Cothran, Paun, et al, 2022; Lampe et al, 2022; Pereira et al, 2022; Sloan et al, 2022; Xu et al, 2021).…”

“…A study by Abramsohn et al (2022) used 22 caregivers of persons with dementia who self-identified as African American/black, Hispanic, or Asian. African American caregivers were more involved in Medical and healthcare recreation, community services, and social services than other ethnic groups.…”

Why Add “Abolition” to the National Academies of Sciences, Engineering, and Medicine’s Social Care Framework?

“…Abolition-influenced awareness activities would be designed in collaboration with patients from marginalized backgrounds, whose input on framing, content, and implementation could improve these patients' experiences with social risk and asset screening. 26,27 Health care teams would also protect against the potential harms of such screening-including the possibility that collected data could increase opportunities for police surveillance and discrimination and exacerbate distrust-instead ensuring that data collection is paired with data use and distribution safeguards as well as meaningful interventions. 28,29 Awareness activities would not end at patient-directed socioeconomic risk and asset assessments; health care teams would be required simultaneously to increase their own awareness about racism, including current and historical institutional racism and antiracist practices.…”

What Matters Most? Intersectional Correlates of Caregiver Burdens

“…This study found that managing paid employment and caregiving work was a challenge for caregivers and that there were differences between spousal and adult children caregivers. Previous studies noted that the effect of caregiver support interventions is often small, resource information based, and findings are inconsistent across studies (Abramsohn et al, 2022;Lopez-Hartman et al, 2012).…”