Ethnic Variations in Dementia Caregiving Experiences

Insights from Focus Groups

Published in: Journal of Human Behavior in the Social Environment, v. 15, No. 2/3, 2007, p. 233-249

Posted on RAND.org on January 01, 2007

by Barbara Vickrey, Tony L. Strickland, L. Jaime Fitten, Gloria Rodriguez Adams, Freddy Ortiz, Ron D. Hays

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The proportion of minority elders with dementia in the United States is projected to rise substantially. This study elicited perceptions of the caregiving experience from informal caregivers of persons with dementia, across different ethnicities. Six focus groups with 47 dementia caregivers of African-American, Chinese-American, Euro-American, and Hispanic-American ethnicities were conducted. Caregiving roles, concern about the person with dementia, and unmet information and resource needs were expressed similarly. However, perspectives differed across ethnic groups on stigma surrounding dementia, benefits of caregiving, spirituality/ religion to ease caregiving burden, and language barriers and discrimination. Findings suggest that interventions to reduce disparities in dementia care quality need to address ethnic variations in caregiving experiences.

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