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Improving the Dementia Care Pathway for South Asian Families

Background

Research suggests that people living with dementia from Minority Ethnic (ME) backgrounds access specialist dementia services at a late stage and more often ‘in crisis’, and tend to drop out of Memory Assessment and Treatment services (MATS)  before they access information about post-diagnostic support. This is not ideal as without post-diagnostic support, the quality of life of the person living with dementia and their family members will be poor, and relationships may be strained.

In Bradford, diagnostic rates of ME groups are good but 40% of these families (particularly South Asian families) drop out from (MATS), compared with 9% of indigenous families

Study Team

Dr Shubra Singh (Chief Investigator:  Bradford District Care Trust)

Professor Jan Oyebode (University of Bradford)

Dr Sahdia Parveen (University of Bradford)

Mrs Ambreen Kauser (Bradford District Care Trust / University of Bradford)

Mr Chris North (Bradford District Care Trust)

Dr Najma Siddiqi (Bradford District Care Trust)

Dr Sara Humpreys (Westcliffe Medical Centre)

Mr Akhlak Rauf (Meri Yaadain)

Aims and Objectives

1: To explore why persons with dementia from South Asian families drop out from the care pathway and establish key barriers and facilitators to complete the care pathway.

2: To produce recommendations about the changes or developments required to ensure successful and integrated services that meet the needs of these families.

We aim to apply an evidence-based, targeted, behaviour change approach (the Theoretical Domains Framework, TDF) to improve timely access to specialist dementia assessment and to post-diagnostic information and support.

What we will be doing

  • Eight family interviews to explore family experiences of post diagnostic support,
  • Follow up interviews four months later to establish any changes in their experiences of the care pathway.
  • Three focus groups with South Asian people living with dementia and their carers.

Inclusion criteria

Participants will be recruited from community groups within Bradford and surrounding areas. To be included in the study, the person with dementia must be aged 65 years or over, the primary reason for referral to MATS must be memory problems and the person must have attended at least one appointment at MATS within the last 12 months. Those with a previous history of head injury, alcohol/drug abuse or other mental health co-morbidities will be excluded.

Plan of work

The study started February 2015 and will end February 2016.

Potential benefits

  • Improvements in the dementia care pathway for South Asian communities
  • Potential increased efficiency in the MATS service by reducing the number of missed appointments, allowing the MATS services to respond more quickly to incoming referrals. It is also expected that it would reduce re-referrals made in a crisis.
  • Scope to roll out more widely to other areas of the country
  • Scope to extend to other communities of interest and cultural groups.

Funding

Research Capability Funding (RCF).

Further information

Please contact Professor Jan Oyebode: j.oyebode@bradford.ac.uk.