Karan Jutlla

The ‘Twice a Child’ projects: learning about dementia and related disorders within the black and minority ethnic population of an English city and improving relevant services

Dementia is found in all races. Within the UK, elders in black and minority ethnic (BME) communities are often unable or unwilling to access services that might help them when they develop dementia. A series of research‐based studies in Wolverhampton have demonstrated that working with community leaders and family carers can identify strengths as well as areas for development in service arrangements. Some areas for development are those shared by all individuals and families with dementia, while others are specific to the cultural group. Areas for action include: the lack of understanding of the normal and pathological features of ageing; fear and stigma associated with mental disorders within BME communities; lack of knowledge of dementia; and insensitivity and inflexibility within some components of services. Knowledge gained from a collaborative review of the situation can be used to plan and deliver iterative improvements. The most effective single initiative is the appointment of a link nurse competent in language, culture and clinical skills. Despite progress over a 10 year period, difficulties remain and there is more to be learned.The research reported here has been conducted over a period of nine years within the city of Wolverhampton. The research has been co‐ordinated from for dementia plus (previously Dementia Plus), which has functioned as the Dementia Development Centre for the West Midlands since 2000.

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 Governments 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 carers 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.

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

ABSTRACT This article is based upon qualitative research carried out with members of the Sikh community caring for a person with dementia. Previous research with South Asian carers of people with dementia has reported problems with both access to, and use of, health and social care services namely due to cultural and language barriers within existing services. The research reported in this article sought for an in-depth understanding of the experiences of Sikhs caring for their family member with dementia. The aim of the research was to explore how migration experiences and life histories impact on perceptions and experiences of caring for a family member with dementia for Sikhs living in Wolverhampton in the West Midlands, United Kingdom. The research, undertaken by the author, applied a biographical approach using narrative interviews. Twelve Sikh carers of a family member with dementia were interviewed. Findings highlighted that migration experiences and migration identities are important for understanding participants’ experiences of services and experiences of caring for a family member with dementia. Person-centred dementia care as a model for practice highlights the importance of understanding life histories to support people to live well with dementia, including their family carers. This paper reinforces this message, demonstrating the impact of specific migration experiences on the experiences of caring for a family member with dementia.

UNDERSTANDING DEMENTIA AMONG THE BANGLADESHI COMMUNITY IN ENGLAND

Background: Despite a growing ageing South Asian immigrant population in England, little is known about the experiences of diagnosis and care for those living with dementia. Dementia in the South Asian ethnic groups has been characterized as ‘a hidden problem in a hidden population’ within a considerably marginalized group and for which the existing literature is limited. Worldwide, there have been a number of small, qualitative studies among South Asian people living with dementia. Consolidation through qualitative meta-synthesis can: (1) merge the experiences of a number of participants across studies to reveal fresh insights, (2) provide an enhanced understanding of the experience, (3) reduce replication by identifying gaps in current literature and (4) generate new research questions. Methods: Following a systematic search of the literature, included qualitative studies were assessed by two independent reviewers for methodological quality. Data were extracted using the Qualitative Assessment and Review Instrument (QARI) developed by The Joanna Briggs Institute (JBI). Findings were synthesized using JBI approach of meta-synthesis by meta-aggregation. Results: Synthesis from thirteen papers were aggregated into six meta-synthesis themes as: (1) Poor awareness and understanding of dementia, (2) Permeated stigma and shame, (3) Burdens or blessings of family caring? (4) Healthcare decision making power within family, (5) Food as coping mechanisms, (6) Attitudes to current and future provision of dementia care services. Conclusions: One research gap was identified using the population framework where despite increasing number of older people from the Bangladeshi community in England, little or no specific research has been carried out on their understanding and management of dementia. Yet, Bangladeshis have higher risk of developing type 2 diabetes and heart disease; both are important indicators of developing dementia in old age. In addition, in England they have lowest education rates, highest smoking rates, poorest socio-economic and worst health positions risk factors for underdiagnosis, poor access to healthcare services and support. The synthesis (1st part) findings will inform the research questions of the 2nd and 3rd parts of the study; focus groups interviews with adults of Bangladeshi origin people without dementia of all ages (18+ years, with no upper age limit) across all socio-economic backgrounds and semi- structure qualitative interviews with Bangladeshi older people living with dementia, their family carers/ significant others respectively.

Cultural Norms About the Roles of Older People in Sikh Families

This chapter is organised into two parts. Part I discusses the migration history of Sikhs in the UK. It reviews current literature that provides a useful insight into the development and characteristics of Sikh communities in the UK, and profiles the Sikh community in the UK.