Access to dementia diagnosis&support in ethnic community.
Research type
Research Study
Full title
Facing the Dementia Challenge: A mixed methods study exploring access to a dementia diagnosis and support within an ethnically diverse communities in Blackburn with Darwen.
IRAS ID
159606
Contact name
Maaria Atcha
Contact email
Sponsor organisation
University of Lancaster
Clinicaltrials.gov Identifier
31135148, ESRC funded PhD studentship
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
The aim of the research is to identify the social and cultural issues that may influence personal decisions to seek a dementia diagnosis and supportive services in the South Asian community within the United Kingdom. This research uses the perspective of four to ten South Asian families recruited from the Memory Assessment Clinic in Accrington (Accrington the mount) and Maple House in Burnley and via GP services in Blackburn in Darwen, and six to eight health care professionals (HCPs) involved in dementia diagnosis in a wider range of clinical settings in Blackburn with Darwen.
A growing body of literature suggests that ethnic minority populations continue to be under-represented in both dementia research and service agendas. Recent literature has claimed that South Asians (SA) are less likely to access specialist services and that dementia diagnoses and access to these services in this community remain limited, despite the fact that South Asians are the largest ethnic minority group in the UK. Blackburn with Darwen (BwD) Public Health officials has become increasingly aware that there is a significant difference between the reported number of people with dementia diagnoses compared to those numbers presented in prima facie evidence, particularly in the South Asian population.
There is a need to explore why there is a difference in dementia diagnosis and access to services in the South Asian population.If such a difference exists, research can help in gaining an understanding of the expectations and experiences of this group with regards to the services. This qualitative study will help to determine how culturally sensitive and individually responsive services can be developed; it will aid in the planning and development of services that encourage greater equality in access to care and improve care outcomes for the South Asian community in BwD. The strategies adopted so far to improve early diagnosis and quality of life for people with dementia have taken little account of the factors influencing decisions in diagnosis, treatment and care (Cooper, 2002).
In terms of organising the research, with the support of the Memory Assessment Clinic who will act as gatekeepers, the potential participants will be identified and given information about the project after assessing the person with dementia capacity to consent. If they express interest they will be invited to a 30 minute introductory meeting with a family member or their carer accompanying the person with dementia (PWD). During the meeting the researcher will go through the participant information sheet and consent form, and ensure that the participants have understood the information relevant to the decision, retain that information, use or weigh that information as part of the process of making the decision and communicate the decision by relating what the researcher has said (BMA, 2007). However, the consent form will be signed during meeting one when the researcher is satisfied that the PWD has the capacity to consent to take part in a 45-60 minutes semi-structured interview session. The participants will be invited to detail their experiences of dementia and the services, which will inform the recruitment of health care professionals (HCP). The HCPs will be chosen from wide variety of settings involved with dementia diagnosis and they will be invited to take part in a 45-60min semi-structured interview which will involve answering a few questions about their experience and drawing a standard dementia diagnosis timeline for Blackburn with Darwen.
REC name
North West - Preston Research Ethics Committee
REC reference
15/NW/0049
Date of REC Opinion
3 Feb 2015
REC opinion
Further Information Favourable Opinion