The project was funded by the Keele Institute for Social Inclusion (KISI) and was completed with the support of Professor Sue Read.
People from minority communities are under-represented in dementia services and there is a perceived lack of understanding of the condition. The project sought to research and identify the barriers to people from minority communities accessing dementia information and advice, offering additional support to marginalised local communities. A copy of the full report is available HERE.
In response to the information gathered through interviews and community meetings it was clear that although local families and minority communities are providing excellent support for their relatives diagnosed with dementia, there was a clear lack of knowledge and information about dementia and the support and help that are available. There was a recognition that carers can become isolated, afraid to talk to people and then lose touch and lose confidence.
Language and culture can be seen as barriers and it is common for people with dementia to forget their language skills, using only their first language. There was concern that support services and care homes do not always support cultural and language needs. Because of these concerns and community expectations, families want to support people at home for as long as possible.
Families and the community were reluctant to involve health and social care professionals and said that services need to be more flexible and adaptable. Families need more knowledge of how the illness will progress and want professionals to explain it to them.
Although this study focussed on groups and individuals from local South Asian Communities; the resulting resources would be useful for anyone affected by dementia.
Information Resource Pack:
A major finding of the report was that many people from the local community do not know what dementia is; they understand and have experienced their relatives’ memory loss, but not recognise this as dementia. When someone is diagnosed with dementia, families are frightened, not knowing what will happen, interviewees said that they were ashamed and embarrassed by having a family member with dementia and families and communities will not talk about dementia.
Interviewees told us that it would be good to have clear, accurate information in different formats. The resulting Information Pack has been developed and includes factsheets which can be downloaded below.
The Information Packs will be distributed both digitally and in printed format to all the local GP surgeries, Memory Clinics and Community Centres. If you would like a printed copy of the pack, please contact email@example.com
We would like to thank the participants for allowing us into their lives and we would like to thank KISI and Professor Sue Read for supporting us with this work.
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