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

Authors

Heather J. Williamson, Northern Arizona UniversityFollow
Andria B. Begay, Northern Arizona UniversityFollow
Dorothy J. Dunn, University of Massachusetts DartmouthFollow
Rachel Bacon, Center for Mind and CultureFollow
Mark Remiker, Northern Arizona UniversityFollow
Yolanda E. Garcia, Northern Arizona UniversityFollow
Michael J. McCarthy, Northern Arizona UniversityFollow
Julie A. Baldwin, Northern Arizona UniversityFollow

Abstract

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.

Keywords

caregiving, rural, dementia, Alzheimer’s disease, phenomenological approach, focus groups

Author Bio(s)

Heather J. Williamson, DrPH, works at Northern Arizona University’s Center for Health Equity Research and in the Department of Occupational Therapy, Flagstaff, Arizona, USA. Please direct correspondence to Heather.Williamson@nau.edu.

Andria B. Begay, M.P.H., works at Northern Arizona University’s Center for Health Equity Research, Flagstaff, Arizona, USA.

Dorothy J. Dunn, Ph.D., works at the University of Massachusetts Dartmouth in the Department of Community Nursing and Health Sciences, Dartmouth, Massachusetts, USA.

Rachel Bacon, Ph.D., works at the Center for Mind and Culture, Boston, Massachusetts, USA.

Mark Remiker works in Northern Arizona University’s Center for Health Equity Research, Flagstaff, Arizona, USA.

Yolanda E. Garcia, Ph.D., works in Northern Arizona University’s Department of Educational Psychology Flagstaff, Arizona, USA.

Michael J. McCarthy, Ph.D., works in Northern Arizona University’s Department of Social Work, Flagstaff, Arizona, USA.

Julie A. Baldwin, Ph.D., works in Northern Arizona University’s Center for Health Equity Research, Flagstaff, Arizona, USA.

Acknowledgements

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article. This work was supported by the National Institute on Minority Health and Health Disparities/National Institute of Health [U54MD012388]. We wish to acknowledge our community partners who assisted the recruitment of study participants. These include the Northern Arizona Alzheimer’s and Dementia Alliance, Northern Arizona Council of Governments, Pinal-Gila Council for Senior Citizens, Alzheimer’s Association Desert Southwest Chapter, Meals on Wheels, Peaks Senior Living Community and North County Healthcare. We also thank the study participants who took the time to share their perspectives on caregiving in northern Arizona.

Publication Date

10-28-2022

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 International License.

DOI

10.46743/2160-3715/2022.5193

Recommended APA Citation

Williamson, H. J., Begay, A. B., Dunn, D. J., Bacon, R., Remiker, M., Garcia, Y. E., McCarthy, M. J., & Baldwin, J. A. (2022). “We Live on an Island:” Perspectives on Rural Family Caregiving for Adults with Alzheimer’s Disease and Related Dementias in the United States. The Qualitative Report, 27(10), 2343-2358. https://doi.org/10.46743/2160-3715/2022.5193

ORCID ID

https://orcid.org/0000-0001-7713-4486