Abstract
BackgroundAfrican American caregivers of community-residing persons with dementia are mostly unpaid and have high rates of unmet basic and health needs. The National Alzheimer’s Project Act (NAPA) mandates improved coordination of care for persons with dementia and calls for special attention to racial populations at higher risk for Alzheimer’s Disease or related dementias (ADRD) to decrease health disparities. The purpose of this study is to describe the perceptions of African American caregivers of people with dementia about community resources needed to support caregiving as well as their own self-care.MethodsUsing a qualitative study design, in-depth, semi-structured qualitative interviews were conducted with caregivers (N = 13) at an urban geriatric clinic to elicit community resource needs, barriers to and facilitators of resource use and how to optimize clinical referrals to community resources. Caregivers were shown a community resource referral list (“HealtheRx”) developed for people with dementia and were queried to elicit relevance, gaps and insights to inform delivery of this information in the healthcare setting. Data were iteratively coded and analyzed using directed content analysis. Results represent key themes.ResultsMost caregivers were women (n = 10, 77%) and offspring (n = 8, 62%) of the person with dementia. Community resource needs of these caregivers included social, entertainment, personal self-care and hospice services. Main barriers to resource use were the inability to leave the person with dementia unsupervised and the care recipient’s disinterest in participating in their own self-care. Facilitators of resource use included shared caregiving responsibility and learning about resources from trusted sources. To optimize clinical referrals to resources, caregivers wanted specific eligibility criteria and an indicator of dementia care capability.ConclusionsAfrican American caregivers in this study identified ways in which community resource referrals by clinicians can be improved to meet their caregiving and self-care needs.
Highlights
African American caregivers of community-residing persons with dementia are mostly unpaid and have high rates of unmet basic and health needs
African American people with Alzheimer’s Disease or related dementias (ADRD) are more likely than others to live in high poverty communities [1] with fewer ADRDspecific support resources [2] and have higher rates of unmet needs than their white counterparts [3]
The most commonly reported barrier to accessing community resources, both for socialization for the person with dementia and for caregiver self-care, was the inability to leave the person with dementia unsupervised (Table 2)
Summary
African American caregivers of community-residing persons with dementia are mostly unpaid and have high rates of unmet basic and health needs. The National Alzheimer’s Project Act (NAPA) mandates improved coordination of care for persons with dementia and calls for special attention to racial populations at higher risk for Alzheimer’s Disease or related dementias (ADRD) to decrease health disparities. African American people with Alzheimer’s Disease or related dementias (ADRD) are more likely than others to live in high poverty communities [1] with fewer ADRDspecific support resources [2] and have higher rates of unmet needs than their white counterparts [3]. They are more likely than others to receive “intensive informal care,. There is little evidence of input from African American caregivers on the development of community resource implementation strategies for interventions designed to support caregivers
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