Eunyoung Lee is a doctoral candidate in the School of Social Work at McGill University. Overall, Eunyoung’s research areas are societal stigmatization of older adults, caregivers of older adults with dementia, health and social care service utilization, psychological well-being in later life, and cultural competency. She hopes to continue to examine social exclusion, which has an immeasurable impact on the quality of life of older adults and their family caregivers.
How Can We Understand Caregiving Experiences among Racially and Ethnically Diverse Family Caregivers of People with Dementia?
Background: Approximately 747,000 people aged 65 years and older suffer from some form of dementia and this figure is expected to increase with the aging of the population. While many older adults with dementia still receive care at home, dementia requires more long-term care from caregivers at home. Not surprisingly, many studies show that serious consequences of caring for people with dementia have generated physical, mental, and financial issues among family caregivers. These results, however, could differ among family caregivers with varied racial and ethnic backgrounds. The purpose of this study is to review recently published articles (within the last 10 years) that focused on race, ethnicity, and dementia caregiving experiences to inform policy and practice. Specifically, 1) what have researchers found regarding dementia caregiving experiences among varied racial and ethnic backgrounds? and 2) how Canadian and American literature looks similarly or differently at race/ethnicity?
Methods: Studies were identified through online bibliographic databases. Inclusion criteria: (1) published between 2006 and 2016, (2) family caregivers of people with dementia in the community, (3) English language, (4) peer-reviewed journals, (5) conducted in either U.S or Canada, (6) rigorous study design and methods, and (7) assessed caregiving experiences such as caregiver stress, coping, social support, service utilization and so on.
Results: Based on inclusion and exclusion criteria, 51 studies were reviewed. The term “Caregiving experience” is broad, so the current study divided it into four domains: 1) negative aspects of caregiving, 2) coping with caregiving, 3) cultural effects on caregiving, and 4) positive aspects of caregiving. Among the four domains, the majority of the studies examined negative aspects of caregiving (i.e. care burden, depression) among family caregivers of people with dementia.
Conclusions: The findings of this study suggest that the caregivers’ demographic information, which relates to cultural factors, may need further investigation in relationship to various caregiving experiences. The findings from this study provide policy implications: (1) assessing the needs of family caregivers is necessary to better help them; (2) specific ethnic programs and community-based long-term care services should be geared more toward the family caregivers of older adults with dementia to provide more extensive help while caring for their loved ones with dementia at home.