Measuring the social care outcomes of people with dementia and carers
Research type
Research Study
Full title
Measuring the social care outcomes of people with dementia and their carers
IRAS ID
260302
Contact name
S Rand
Contact email
Sponsor organisation
University of Kent
Clinicaltrials.gov Identifier
Not applicable, Not applicable
Duration of Study in the UK
1 years, 7 months, 31 days
Research summary
There are currently over 767,000 people living with dementia in England and Wales, of which two thirds live in their own home. An important question is what type(s) and models of community-based social care services, best support people with dementia and their carers. To find this out, we need a way of measuring the effect services have on people’s lives. The Adult Social Care Outcomes Toolkit (ASCOT) is a questionnaire that asks people about aspects of their life that may be affected by services. This questionnaire has already been used by councils, researchers and care providers to review services.
It is, however, difficult to collect this information from people who have memory or communication difficulties, including some people with dementia. To work around this, we have developed a version of ASCOT, the ASCOT-Proxy, that is completed on behalf of a person by someone who knows him/her well – such as, a close friend or relative. There is also another version of the questionnaire called the ASCOT-Carer, which looks at aspects of life that are important to friends/relatives who look after someone.
This study will test the ASCOT-Proxy and the ASCOT-Carer with 300 carers of people with dementia living in their own home. People will be invited to complete a paper questionnaire or online survey with an optional brief follow-up questionnaire one week later. The study will be advertised with the help of local authority adult social care departments, carers’ organisations and care providers. We will also advertise the study on social media. The information collected will be used to assess whether the questionnaires are easy to complete and measure what they are intended to measure – that is, aspects of people’s lives that might be affected by social care services – in a way that is stable over time.
REC name
Social Care REC
REC reference
19/IEC08/0057
Date of REC Opinion
14 Jan 2020
REC opinion
Further Information Favourable Opinion