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Let’s get talking about Race and Dementia and other marginalised communities… Some thoughts about my latest publication

Posted in LGBT, Public Policy, Publications, Social Care Reform, and Support and Advocacy

I have been researching dementia care in South Asian communities in the UK since 2006. Now a Senior Lecturer in Dementia Studies I have spent the last few years developing teaching, research and networks concerning cultural competency in dementia care. Evident from my discussions with healthcare professionals, care workers, academics and family carers is the impact that experiences of racism in the UK has on people’s experiences of services and their relationship with the state – but little is reported about this in the literature. There is some literature that draws our attention to the experiences of hostility and racism for South Asian migrants in the UK in the early 1960s. It is to no surprise therefore, that my doctoral research with Sikh carers of a family member living with dementia in Wolverhampton, UK highlighted how such experiences impact on their experiences of services as carers and also their experiences of caring for a person with dementia. This is the focus of my latest publication in Ageing and Society recently described as “thought provoking” (Michal Herz, Head of Education, Association for Dementia Studies, University of Worcester) which demonstrates how experiences of health and social care services for Sikh carers revealed wider discourses of the social inequalities and exclusion faced by ethnic minorities when attempting to access services. The article highlights how experiences of hostility and White racism upon arrival to the UK have continued rather than changed over time causing the migrant Sikh carers to connect their present predicament as ethnic minorities and immigrants in the UK with their particular experiences of White racism and exclusion recalled from their past. It also draws our attention to the fact that whilst participants shared similar experiences regarding their access to (and use of) health and social care services, the self-efficacy and resiliency skills employed to cope and manage with their caring situations have been accrued based on their own individual experiences of migration. The article reinforces person centred dementia care as a model for practice by recognising the diversity and internal heterogeneity of the Sikh community. It also challenges current assumptions and stereotypes about oppressive cultural and community norms such as ‘they look after their own’ which can reinforce the social inequalities and exclusion faced by such groups. Moreover, the article gets people thinking about other types of ‘marginalised’ communities and how we can ensure a fair access to services as expressed in a recent review:

“This article was hugely insightful and I was particularly struck by the phrase ’they look after their own.’ I started to think about the village where I live. It has a population of around 1,000 (entirely white community) and I know a lot of people here but I have not heard of anyone in the village having dementia. I have asked a number of people and they don’t know of anyone either. Many of these people are living in the village possibly remotely from their families. Public transport is very poor. The local doctor’s surgery is over stretched. So what will happen to these people? “ (Dr Shirley Evans, Research Associate, Association for Dementia Studies, University of Worcester.

Understanding the diversity of experiences of people with dementia and their families is a core area of work at the Association for Dementia Studies at the University whereby we are undertaking various education and research projects to contribute towards building evidence-based practical ways of working with people with dementia and their families that enables them to live well. For more information please visit:


Article reference:

Jutlla, K. (2014). The impact of migration experiences and migration identities on the experiences of services and caring for a family member with dementia for Sikhs living in Wolverhampton, UK. Ageing and Society, Available on CJO 2014 doi:10.1017/S0144686X14000658

Dr Karan Jutlla

Senior Lecturer in Dementia Studies, Association for Dementia Studies, University of Worcester.