An online toolkit of enhanced interventions

Overview of the issue

Roughly 25,000 people from ethnic minority communities live with dementia in the UK. The largest single grouping are people whose origins are South Asian countries. People from these communities are at greater risk of developing dementia. However, they are less likely to access support at all points of the dementia care pathway, so are more likely to seek help in a crisis or at a later stage in the condition.

South Asian map
On the bench

There are also differences in how people from South Asian communities use dementia services. Symptoms of dementia are more likely to be missed or misinterpreted by NHS and other services; As South Asian people are more likely to receive a diagnosis at a later stage of their illness, this limits their access to NICE recommended treatment. People from South Asian communities are also more likely to seek support from local community organisations they are familiar with than from NHS and statutory services.

The differences in access to help can mean that, compared with white British people, South Asian people living with dementia and their carers are potentially disadvantaged.

The following film was produced as a representation of some of the challenges faced by South Asian carers. The content of this film has been informed by real life events that were shared as part of the ADAPT study. Warning: Some viewers may find parts of this film upsetting

The ADAPT Study

This project set out to create a set of online resources of culturally appropriate assessments and interventions which support people from South Asian communities at various stages across the dementia care pathway. We believe that this website will help statutory and voluntary sector organisations provide more equitable services.

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By working with South Asian families, statutory (e.g. the NHS) and voluntary organisations, this project brought together evidence based resources and examples of good practice to facilitate equitable service provision. The study aimed to identify toolkit elements that can be drawn upon by commissioners, clinicians, and care teams to meet the needs of people from South Asian communities living with dementia (including family carers).

Use of language

The work presented on this website arose from conversations the research team had with a wide range of individuals. This included people who are living with dementia or who are caring for them, as well as people who are working within the voluntary and statutory services. We are very conscious of the different language, cultures and experiences of all those who have been kind enough to talk with us while we gathered this information. As a result, we have tried to take into account the suggestions from those we have spoken to about the best best words to use when referring to the customs, approaches and cultural perspectives of people from South Asian communities. We hope that you find this appropriate here.

The views and opinions expressed by speakers in the videos are based on their personal and professional experiences.