Dementia Caregivers’ Experiences Engaging Supportive Services While Residing in Under-Resourced Areas

Article type: Research Article

Authors: Cotton, Quinton D.^{a; b; *} | Kind, Amy J.H.^{a; c} | Kim, Alice J.^{a; d} | Block, Laura M.^e | Thyrian, Jochen René^{f; g} | Monsees, Jessica^f | Shah, Manish N.^{b; h; i} | Gilmore-Bykovskyi, Andrea^{a; e}

Affiliations: [a] Division of Geriatrics and Gerontology, Department of Medicine, University of Wisconsin-Madison School of Medicine & Public Health, Madison, WI, USA | [b] University of Wisconsin-Madison Institute for Clinical and Translational Research, Madison, WI, USA | [c] William S. Middleton Memorial Veterans Hospital, Geriatric Research Education and Clinical Center, Madison, WI, USA | [d] Department of Psychology, University of Southern California, Los Angeles, CA, USA | [e] University of Wisconsin-Madison School of Nursing, Madison, WI, USA | [f] German Center for Neurodegenerative Diseases (DZNE) Site Rostock/Greifswald, Greifswald, Germany | [g] Institute of Community Medicine, University Medicine-Greifswald, Greifswald, Germany | [h] Department of Emergency Medicine, University of Wisconsin-Madison, Madison, WI, USA | [i] Department of Population Health Sciences, University of Wisconsin-Madison, Madison, WI, USA

Correspondence: [*] Correspondence to: Quinton D. Cotton, MSSA, Department of Medicine, University of Wisconsin School of Medicine and Public Health, 2500 Overlook Terrace, William S. Middleton VA Hospital, GRECC Kind Research Group –11G, Madison, WI 53705, USA. Tel.: +1 608 262 3057; Fax: +1 608 280 7248; E-mail: qcotton@wisc.edu.

Abstract: Background:Family caregivers of people living with dementia benefit from supportive service use to address care needs associated with caregiving. Yet, research consistently demonstrates low rates of service use. Existing research has focused on barriers and facilitators to service use, with few studies examining the influence of caregivers’ environmental context which often patterns social advantage and health services accessibility. Objective:To describe the perspectives of caregivers residing in socially disadvantaged areas have in regards to utilizing supportive services. Methods:Ten informal caregivers residing in socially disadvantaged areas participated in in-depth interviews that were analyzed using thematic analysis. Results:Across all interviews, caregivers spontaneously described common precedents of service use (crisis or accumulation of unmet needs) and a distinct sequence of stages (seeking, initiating, and utilizing) surrounding service engagement. Major themes characterizing caregivers’ experiences throughout service engagement highlight the varied influence of personal, familial, health, and social system-related factors. Findings demonstrate that caregivers may have different service needs as dementia progresses and that gerontological social work practice can facilitate service use. Conclusion:While preliminary, these findings provide important insights into new domains that can be further examined in future research and intervention efforts to improve supportive service use in socially disadvantaged and underserved communities.

Keywords: Caregiving, dementia, health disparities, social support

DOI: 10.3233/JAD-210609

Journal: Journal of Alzheimer's Disease, vol. 84, no. 1, pp. 169-177, 2021