The experiences, needs and outcomes for carers of people with dementia: Literature Review

This literature review was conducted as part of my role at the Association of Dementia Studies, University of Worcester.RSAS is developing new and innovative ways of supporting carers, people living with dementia and their families. The charity aims to enhance the health and well-being of carers through providing services that increase their knowledge and understanding of dementia, further enhances their caring skills and provides supportive and therapeutic services to them. This literature review provides an up-to-date review concerning the evidence in relation to the following questions: 1 What is the experience of caregiving for a person living with dementia, and in what context does caregiving take place? 2 What implications does caregiving have for the person/family member involved in caregiving and the person with dementia? 3 What is currently known about the factors that protect or increase the risk of poor outcomes in caregiving? 4 What evidence is there for interventions to support family caregiving and reduce the risk of poor outcomes and how is this delivered in relation to: a Information and Education b Multi-component, psycho-educational interventions c Psychological Interventions d Peer support and other social interventions e Assistive technology and new media 5 What form of service provision is required to support family caregivers? This will include consideration of such issues as: a How might a service be delivered? b What factors will influence delivery including location, design, accessibility and flexibility? 6 Who will the service be for and how can family caregivers be supported to engage with the service

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

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 and 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 homogenous group; and that 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