Intellectual disability & dementia carer education and guide
Research type
Research Study
Full title
Co-production and development of an intellectual disability dementia training programme and care giver support guide.
IRAS ID
310648
Contact name
Daniel Acton
Contact email
Sponsor organisation
University of Chester
Clinicaltrials.gov Identifier
1597, Cheshire and Wirral Partnership NHS Foundation Trust
Duration of Study in the UK
3 years, 0 months, 4 days
Research summary
People with intellectual disabilities are living longer due to improvements in healthcare, but are at increased risk of developing conditions, such as dementia. Dementia can have a significant effect on people’s lives and cause psychological and emotional distress for individuals and those who provide care. Carers often feel under prepared and a lack of professional educational support to help them provide person centred care to a person following a diagnosis of dementia and progression of the disease. This study is for carers only to support them in improving care provision.
This research aims to explore the effectiveness of co-producing a dementia education programme and support guide to improve dementia care, to people with intellectual disabilities. A three stage process will be used and people with a lived experience of caring will be invited to participate in each stage using feedback to understand people’s views on areas of knowledge and education requirement. This information will be incorporated to design the dementia education programme with families, carers and professionals. Carers will be invited to continue with developing the education programme and form the task and finish group. The support guide will be designed by the lead researcher, using information obtained from carers with lived experience to help direct interventions.
The third stage will be to test out the programme with carers of patients from a Cheshire and Merseyside NHS Trust. Education sessions will be delivered to 10 carers by a trained intellectual disability professional and 10 carers will receive treatment as usual. The lead researcher will complete tests before and after to see if the education and support guide made any changes to carers burden and levels of psychological distress compared to treatment as usual. Carers will also be asked about their experiences and if they found the education and support guide useful.
REC name
South Central - Hampshire A Research Ethics Committee
REC reference
22/SC/0230
Date of REC Opinion
19 Aug 2022
REC opinion
Further Information Favourable Opinion