James, Tiffeny; (2022) Equity in dementia care: policy, practice, and patient, carer, and clinician experiences. Doctoral thesis (Ph.D), UCL (University College London).

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Text Tiffeny James - final redacted PhD Thesis - July 2022 - Equity in dementia care.pdf - Accepted Version Download (30MB) | Preview

Abstract

Background: All humans have the right to health and equitable healthcare. This thesis explores discrimination and equity in dementia care. I investigate whether people affected by dementia are supported through policy, practice, and research to receive care which is tailored to protected and minority needs such as age, ethnicity, gender, and sexual orientation, and which enables them to achieve the same health outcomes as others. Methods: I systematically review equity in dementia policy, exploring the extent to which national clinical practice guidelines from around the world consider and make recommendations related to protected characteristics. I then narrow the focus to ethnicity, referring to race, religion, culture, and language and propose a new hypothesis to improve access to culturally appropriate psychosocial interventions for people affected by dementia based on evidence of what is acceptable and works. Finally, I provide a UK illustration of equity in dementia care in a qualitative study using interviews (n = 48) and thematic analysis to explore the views of people affected by dementia and clinicians about the care and support that UK South Asian and White British people receive and want. Findings: Only 23% of the world’s countries have dementia guidelines and these consider protected characteristics to varying degrees, but none consider them all. In my new hypothesis, I show evidence that culturally adapted interventions do not need testing through randomised controlled trials provided the core components are retained and they are acceptable, feasible, and maintain effectiveness. My qualitative study suggests that dementia care in England is inequitable as access to, and use of appropriate services was impacted by ethnicity, socioeconomic status, and personal resources such as money and language rather than need for care. Discussion: Equity is an important goal to strive for in dementia care. My findings provide actionable recommendations to improve equity in dementia policy, practice, and research.

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