Abstract
This study highlights primary caregivers’ experiences with health department policies designed to support people with cognitive impairment/Alzheimer’s Disease and Related Dementias (ADRD). Caregivers were defined as individuals aged 45-85 that provide at least 10 hours of unpaid care. Five, 90-minute focus groups were conducted virtually with 24 caregivers of individuals with cognitive impairment/ADRD. Transcripts were analyzed thematically. Caregivers were primarily Black females (75%) with at least a high school education (42%). Care recipients were likely to be community-dwelling parents (71%), with moderate or advanced (79%) dementia. Caregivers described challenges with accessing resources intended for care recipients, especially as cognitive impairment worsened. Caregivers reported providing care 24/7 as traumatizing. Home-based personal aides and companionship services did not reduce this burden. COVID-19 impacted caregivers and care recipient’s access to resources increasing burden. Policies need to be flexible for ever-changing needs of individuals with ADRD and support the overall well-being of the caregivers.
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