Conceptualisation of dementia in multi-ethnic communities
Research type
Research Study
Full title
Conceptualisation of dementia in multi-ethnic communities
IRAS ID
214577
Contact name
Naina Patel
Contact email
Sponsor organisation
De Montfort University
Duration of Study in the UK
3 years, 0 months, days
Research summary
This research study will aim to explore and understand how people from multi-ethnic and generational communities and professional stakeholders, conceptualise dementia. We will also explore the relationship between conceptualisation and the time at which diagnosis of dementia is sought by people with this disorder and their carers. Obtaining timely diagnosis is important since there are some medications that can help improve the quality of life for the person with dementia (PWD), allow time to secure support for carers, enable financial planning, and end of life care arrangements for the PWD.
However, evidence suggests that people from black and minority communities do not seek diagnosis of dementia until the advanced stages of the condition, by which time, very little can be done to help the person with dementia and the carer. These delays are attributed to cultural beliefs, attitudes and stigma, as well as barriers in the health system.
This study will recruit PWD and carers from Caribbean, Indian Hindu Gujarati and white British communities to explore their conceptualisations of dementia and their journeys to diagnosis. PWD and carers will be recruited using community based recruitment strategies such as presenting information about the study in community organisations meetings, posters in supermarkets, and through the researchers’ network of personal contacts within local communities. It is anticipated that up to 12 PWD from multi-ethnic communities who are assessed as having the capacity to consent under the Mental Capacity Act 2005 will be recruited to the study. The study will also aim to recruit 12 carers.
Multi-ethnic community participants together with a range of professional stakeholders including the community and voluntary sector, will be invited to participate in interviews or focus groups, focused on exploring their conceptualisations of dementia, as well as their views and experiences about the barriers/enablers to timely diagnosis of this condition.REC name
Wales REC 4
REC reference
16/WA/0332
Date of REC Opinion
5 Nov 2016
REC opinion
Unfavourable Opinion