Dementia care-giving in black and Asian populations: reviewing and refining the research agenda

Abstract

Despite the increased prevalence of dementia little work has been done to explore the extent and nature of care-giving in black or Asian-UK populations. Evidence that does exist suggests that the consequences of care-giving are significant but different from those experienced by white carers and are mediated by a number of culture-related factors. These include: ethnically specific conceptualisations of dementia; expectations of family duty; religiosity; the adoption of positive re-appraisal strategies, and beneficial outcomes. Present approaches to research are narrow, do not take account of cultural dimensions and employ terminology and care-giving frameworks which are of limited relevance. That the evidence base is characterised by small-scale studies, and weak methodology further undermines its validity. Research deficits are systemic and fundamental and are both conceptual and methodological. A key contribution would be the development of a multi-dimensional theoretical model that takes account of the role played by culture, ethnicity and structural inequality in shaping care-giving experiences and profiles. Incorporating the perspectives of black and Asian carers, and the influence of the life course of individuals and communities and employing qualitative methods would also influence the direction of research, improve its quality and generate knowledge in this underdeveloped field. Copyright © 2005 John Wiley & Sons, Ltd.