Care for people with Dementia given by Relatives at the End of life
Care for people with Dementia given by Relatives at the End of life: CADRE
University College London
Z6364106/2015/12/59 , data protection number
Duration of Study in the UK
1 years, 5 months, 1 days
People are now living healthier and for longer. This ageing population means that the prevalence of dementia is expected to rise. Most people with dementia are cared for in the community by family and friends, often until the end of their life.
Caring for someone with dementia can be emotionally demanding, particularly at the end of life. Carers require support, but currently many options available to them (like carers’ groups) are provided outside the home. These are poorly attended, with an estimate of only 1 in 10 carers accessing this support, partly due to the requirement to leave their relative with dementia at home. As a growing number of older people become more familiar with the Internet, this shows great potential to support carers by allowing them to access help from their home at any time.
This study has three parts:
1.Literature review: scoping of literature for evidence of existing digital/internet based interventions for carers
2.Qualitative interviews: Interviews with older family carers (65 years +) of people with dementia to explore carer support needs at the end of life and the views of older carers about the use of an Internet-based support tool
3.Co-design intervention development: A research development group of health and social care practitioners and family carers will synthesise the findings from the literature review and interviews to develop the initial content for an Internet-based support tool. This will then be tested using focus groups for feasibility/usability, and further developed.
This work is in preparation for a future feasibility study and RCT.
The research will not only provide important information to inform the development of carer-support interventions, but will also develop a new approach to support carers of people with dementia.
London - Hampstead Research Ethics Committee
Date of REC Opinion
17 Jun 2016