Case study

The Jeevan Project was set up in Edinburgh and the Lothians in 2015 after research was undertaken by the Minority Ethnic Carers of People Project (MECOPP) into dementia and Black and Minority Ethnic (BAME) communities. The findings highlighted the significant gaps in service provision as well as low levels of understanding of dementia, the diagnosis and prognosis procedures.  The research also identified stigma leading to isolation and withdrawal from the community.

The project was set up to provide post-diagnostic support for those with dementia and to support carers and family members to understand the diagnosis.  The project aimed to highlight the effectiveness of targeted support ensuring the person with the diagnosis was at the centre of all decision making.

The project identified early on that older South Asian women are the predominant carers of people with dementia within their communities.

To raise awareness through educational sessions addressing the significant lack of knowledge and understanding of dementia amongst the BAME community.

To support early diagnosis through improving access to memory assessment services to ensure those diagnosed with dementia make informed choices about their preferences for future care; and, enable carers to seek support in their own right.

To challenge stigma about dementia within the BAME community

To provide post-diagnostic support through the provision of advocacy and casework

To provide support to carers from the South Asian communities.

To work in partnership with mainstream statutory and voluntary sector providers to build their knowledge and capacity to work more effectively with the target communities.

The project is now its final year and aims to continue supporting existing and new beneficiaries to transition into mainstream services. This includes accessing their rights under the Carers (Scotland) Act, benefitting from post-diagnostic dementia support and utilising the new Financial Health Check offered by Citizens Advice Scotland.

MECOPP will also seek to share the wealth of knowledge gained by the project with statutory services to support them to better design and deliver services that work for BAME communities, including for those older women who have caring roles.

Older women who are carers in these communities often have to leave fulltime employment, face financial hardship, and suffer ill-health if they are not properly supported. It is imperative that there should be a collaborative effort to encourage carers to take up their rights under the Carers Act, starting with an adult carer support plan to support them to sustain their caring role.

As the project’s learning and development has progressed, two key issues have emerged: the effectiveness of a cultural brokerage approach in working with South Asian people with dementia and their carers; and the limitations of the ‘5 pillars’ model in supporting diverse communities.

Some of the problems experienced are beyond the scope of the model and are symptomatic of much wider and more entrenched structural issues.  Other factors such as the stigma associated with dementia within the South Asian – and other Minority Ethnic -communities requires a concerted effort to raise awareness of the condition as the first step in ‘challenging’ negative assumptions and misconceptions.   As the population ages and increasing numbers of people from South Asian and other Minority Ethnic communities are diagnosed with dementia, the challenge is twofold:  to ensure not only that individuals benefit from the Scottish Government commitment to 12 months post diagnostic support;  but, to ensure that the appropriate supports and services are in place beyond this 12 month period.

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