“We Live on an Island:” Perspectives on Rural Family Caregiving for Adults with Alzheimer’s Disease and Related Dementias in the United States

As the United States’ aging population grows, there will be increased prevalence of individuals living with Alzheimer’s Disease and related dementias (ADRD), who largely rely on the support of their family caregivers. Family caregivers residing in rural areas face additional challenges with managing caregiving responsibilities and navigating support services. The purpose of this multilevel phenomenological qualitative study was to explore the assets, unique needs, and resources of rural-residing ADRD caregivers from the caregiver, provider, and policy influencers’ perspectives. The study took place between 2019 through 2021 in northern Arizona, a largely rural and geographically vast area home to caregivers from diverse backgrounds. Twenty-seven caregivers to a loved one with ADRD participated in focus groups. Twelve health and social services providers and twelve policy influencers, those involved in leadership positions for aging programs or advocacy groups, completed individual interviews. Caregivers demonstrate many assets which contribute to their ability to manage and cope with their caregiving role. However, caregivers face a series of issues related to their caregiving role and need early and ongoing education regarding ADRD. There is a lack of resources available in rural areas, in particular providers, making it challenging to obtain needed resources necessary to support their loved one with ADRD. Furthermore, there is a need for more providers trained in working with aging adults and those experiencing ADRD, and a need for more culturally relevant resources. As the United States’ aging population grows, there will be increased prevalence of individuals living with Alzheimer’s Disease and related dementias (ADRD), who largely rely on the support of their family caregivers. Family caregivers residing in rural areas face additional challenges with managing caregiving responsibilities and navigating support services. The purpose of this multilevel phenomenological qualitative study was to explore the assets, unique needs, and resources of rural-residing ADRD caregivers from the caregiver, provider, and policy influencers’ perspectives. The study took place between 2019 through 2021 in northern Arizona, a largely rural and geographically vast area home to caregivers from diverse backgrounds. Twenty-seven caregivers to a loved one with ADRD participated in focus groups. Twelve health and social services providers and twelve policy influencers, those involved in leadership positions for aging programs or advocacy groups, completed individual interviews. Caregivers demonstrate many assets which contribute to their ability to manage and cope with their caregiving role. However, caregivers face a series of issues related to their caregiving role and need early and ongoing education regarding ADRD. There is a lack of resources available in rural areas, in particular providers, making it challenging to obtain needed resources necessary to support their loved one with ADRD. Furthermore, there is a need for more providers trained in working with aging adults and those experiencing ADRD, and a need for more culturally relevant resources.