The personalisation of dementia services and existential realities: understanding Sikh carers caring for an older person with dementia in Wolverhampton

Abstract

While personalisation and service choice remains a central plank of the Labour Government's policies in health and social care, there is a growing evidence base confirming that ethnic minority groups, are disadvantaged as service users in the UK. Building on some baseline data collected in 2000 and 2003/04, our recent research (Jutlla & Moreland, 2007) has reaffirmed the difficulties that Asian carers have in accessing services when caring for a relative with dementia.While such access data is important, we wish to move beyond the demographic aspects to consider the existential realities (the ontology) of the lives and cultures of those in minority ethnic groups. This paper consequently discusses the diversity and complexity of migration patterns among the Sikh community living in Wolverhampton. The paper conceptualises some of the ways in which different migration experiences and the realities of daily life influence the perceptions, experiences and patterns of care among migrant Sikh carers in Wolverhampton caring for an older person with dementia. The paper thus explores the thesis that the Sikh community is not a homogeneous group; and that the diversity and differences within the Sikh community can have important implications for care. Taking a biographical narrative approach to fieldwork, the relevant factors to be considered include: the carer's country of origin; their migration route and reasons for migration; their age at migration and the cultural experiences of the carers and their communities both in the UK and India.

What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings

“…This observation is reiterated by Jutlla and Moreland (2009) who emphasise how BME communities are not homogenous, and there are differences of experience when caring for someone with dementia between these communities. It appears that when studies have adopted this "South Asian" labelling approach they have not adequately captured the full range of experiences, attitudes and needs of individuals from BME sub communities.…”

“…However, a limitation of the study by Jutlla and Moreland (2009) is the small sample size of Sikh carers which limits generalisability of results. Furthermore, by concentrating on only one BME community, the findings can only be related to members of the Sikh community who have in fact migrated.…”

“…For example, Jutlla and Moreland (2009) found that when providing care for someone with dementia in a Sikh household, there was an expectation for the daughter in-law to provide the care. These researchers found that this example added to the already high incidence rate of daughter in-laws remaining as "hidden" carers in Sikh families.…”

“…A study by Jutlla and Moreland (2009) and lived with other young men whilst seeking employment. During this time the carer learnt how to cook, clean, be self-sufficient, and it was these skills learnt when first immigrating to England which were then used when he began caring for his wife with dementia ).…”

Black, Asian and Minority Ethnic Communities and Dementia – Where Are We Now?

“…The small amount of research in the UK on dementia in South Asian communities [34][35][36] has illustrated the importance of understanding how expectations and obligations regarding care are likely be negotiated within South Asian communities and the challenge of developing effective awareness raising.…”