Currently over 767,000 people live with dementia in England and Wales. Two thirds live in their own home but this is expected to increase to over 1 million people by 2030. The ability to stay at home, in familiar surroundings, is important to people with dementia and their families. For many, community-based social care services, like personal care in the home, enable them to maintain their independence, stay connected to their local community, and to live well with dementia. For families and friends who care for someone with dementia, these services may also help them. An important question is what type(s) of community-based services, like personal care in the home and day activities, best support people with dementia and their carers. The Adult Social Care Outcomes Toolkit (ASCOT) is a questionnaire that asks people about aspects of their life that might be affected by social care services (for example, having control over everyday life). This questionnaire has already been used by researchers and care providers to review how well services support people. It is, however, difficult to collect this information from people who have memory or communication difficulties, including people with moderate to severe dementia. To work around this, we have developed a new version of ASCOT, the ASCOT-Proxy. This version 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 and relatives who look after someone. This includes things like feeling supported and encouraged in their caring role. 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 the survey as a paper questionnaire or online. The study will be advertised with the help of others interested in this work. These will include local authority adult social care departments, carers organisations and care providers. We will 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 – aspects of people's lives that might be affected by social care services – in a way that is stable over time.

Ann-Marie will work with PSSRU colleagues (Chief Investigator) Stacey Rand, Dr Karen Jones and Professor Julien Forder

Start date: September 2019; End Date: September 2021
Funder: NIHR Research for Patient Benefit
Funding: £149,786