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

Abstract

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

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 finding that carers viewed their family member's cognitive decline as a normal process of ageing was mirrored in a study by Jolley, Moreland, Read, Kaur, Jutlla, and Clark (2009) who conducted interviews over a six year period with 30 BME carers of people with dementia in Wolverhampton. The study highlighted that a lack of information and understanding held by African Caribbean and South Asian carers with regard to dementia led them to be unaware of its differentiation from normal ageing.…”

“…Carers from the study also highlighted a distinct lack of clarity regarding the eligibility criteria for accessing mental health services. This resulted in carers feeling that they were not eligible to access such services (Jolley et al, 2009). Although this study was able to highlight the experiences of carers accessing mental health services for support, a limitation is that in the latter stages of the study, only South Asian carers were interviewed and no African Caribbean carers were involved as seen in the initial interviews conducted.…”

“…In addition, the study by Jolley et al (2009) captured the experiences of these carers whilst visiting their local General Practitioner. The majority of carers felt that the knowledge base of General Practitioners was variable, leading to some cases of initial misdiagnosis or a delay in reaching specialist care and support.…”

“…Carers were found to not seek help or access mental health services due to being unaware that they were caring for someone with dementia (Jolley et al, 2009). …”

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

“…In practice black and minority ethnic communities are likely to find themselves late arrivals to strategic discussions that are already dominated by clinical and academic institutional interests. Yet this is an opportunity to take forward previous work (for example, from The Royal College of Psychiatrists [10,11] or the Race Equality Foundation [12,13]) on relevant priorities for healthcare research in relation to black and minority ethnic mental health needs, including dementia, and developing a more active role for black and minority ethnic communities in the design of studies and as co-researchers [14,15].…”