The paradox of Urban AD/ADRD caregiving during COVID‐19 pandemic

Abstract

AbstractBackgroundThe SARS‐CoV‐2 RNA COVID‐19‐related societal safety measures triggered unintended consequences with unknown ramifications for the under‐reported, under‐studied, and under‐represented older female family caregivers of those with Alzheimer’s disease/Alzheimer’s disease related dementias(AD/ADRD). The purpose of this qualitative study was to investigate older female caregivers' lived experiences in the context of caring for family members with AD/ADRD during COVID‐19.MethodResearchers used the Dutch (Utrecht) method of phenomenology with interpretative description and thematic analysis, which is valuable to investigate the meaning and context of phenomena when scant research exists.ResultRegardless of community setting, caregivers' physical limitations and hastened disease progression contributed to caregiving fatigue and consideration of placement. Urban caregivers of those with AD/ADRD reported less support (personal and community agency support) in spite of greater access to services in this sample (N = 20). All respondents saw hastened progression of their family member’s dementia they attributed to social isolation. AD/ADRD caregivers who provided full‐time caregiving for their family member depended heavily on their care recipients' financial resources (social security, retirement, savings, and pensions) for basic living expenses. The caregivers reported fear of financial insecurity should their family member be placed in long‐term care.ConclusionThe findings from this study suggest the financial, emotional, and mental toll of caregiving during the COVID‐19 pandemic were greater in the urban sample than in the rural caregiving sample. These findings have practice, research, and policy implications for AD/ADRD caregivers and their care recipients.