January 11, 2021
This post was written by Dr Barbora Silarova (Research Associate at PSSRU, University of Kent), Aakta Patel (Research Adviser, representing Patient and Public Involvement), Della Ogunleye (Research Adviser, representing Patient and Public Involvement), and Dr Stacey Rand (Senior Research Fellow, PSSRU, University of Kent)
What do we know about people living with dementia and people who support them?
There are currently around 885,000 people living with dementia in the UK , of whom 500,000 are women and around 25,000 are from Black, Asian and minority ethnic (BAME) communities . Supporting the people living with dementia in the UK, are around 700,000 spouses, family members and friends (often referred to as ‘carers’). Between 60 and 70% of carers are women .
For families and friends who care for someone with dementia, community-based social care services may allow carers to continue in paid employment and to have time for hobbies, friendships and to stay healthy. Some services, like carer support groups, may also help carers feel more supported and connected with others in a similar situation.
Talking to carers, we know that supporting someone with dementia is rewarding and frustrating at the same time, often challenging, especially when juggling different responsibilities, and people worry about the present and the future simultaneously.
To understand what the needs of people who support someone with dementia are, and how the social community-based services may improve their quality of life we need a tool to measure this. 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, feeling supported, having control over everyday life).
What do we not know?
It is difficult to collect information about aspects of life that might be affected by social care services from people who have memory or communication difficulties, including people with moderate-to- severe dementia. To work around this, in our research, we use a questionnaire called the ASCOT-Proxy that is completed on behalf of the person with dementia, 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. We are now specifically looking at whether the ASCOT-Carer questionnaire could be also used among relatives and friends who support someone living with dementia.
Why do we need to hear from you?
We need help from 300 family members, spouses and friends who support people living with dementia. By filling in an online survey (paper format is also available) you will help us to understand whether the two questionnaires (ASCOT-Proxy and ASCOT-Carer) measure what they are supposed to measure. This is very important, as without the right tool we will be unable to tell what your needs are and how social care community services may help you.
We are especially in need to hear from the BAME community and from men, to make sure our study represents their views. Although there is a considerable number of men who provide support to their spouses and family members, research on male carers is limited and their views may not be adequately considered. It is possible that their experience of supporting someone with dementia is different than their female counterparts . The number of carers providing care for people with dementia from BAME communities is unclear. However, it is very likely that in the UK, carers from BAME communities provide more care for their relatives and/or friends, with any condition, than majority groups .
Who we are looking for?
People living in England who are a family member or friend of someone living with dementia, who:
- Lives at home (not in a nursing or residential care home);
- Uses at least one type of social care service: by social care support, we mean home care (domiciliary care), day centre or activities, sitting service, befriending, short breaks for you or the person you support, and carer organisation support, like information and advice, social activities, or carer support groups or receiving support from an occupational therapist. This could include help funded by the local authority or that you pay for yourself, or support from other organisations, like Age UK;
- Person with dementia would not be able to answer a postal or online questionnaire, even with help.
I would like to help
If you decide to take part you will be asked to complete an online survey:
The survey password is rfpb.
What if I have any questions about the survey?
Dementia, social services and the NHS – Dementia guide: to learn more what help and support is available through social services and the NHS
Alzheimer’s Society: to learn more about dementia and get an advice and support
Carers Trust: to find a support in your local area
This project is funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number NIHR200058). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
- Wittenberg Raphael, H.B., Barraza-Araiza Luis, Rehill Amritpal, Projections of older people with dementia and costs of dementia care in the United Kingdom, 2019–2040. 2019, London School of Economics and Political Science: Care Policy and Evaluation Centre, London School of Economics and Political Science.
- Hart, N. Black, Asian and minority ethnic communities and dementia research 2019 [cited 2020 28/10/2020]; Available from: https://www.alzheimers.org.uk/for-researchers/black-asian-and-minority-ethnic-communities-and-dementia-research.
- Fraser Lewis, S.K.S., Jon Sussex, Phill O’Neill and Lesley Cockcroft, The Trajectory of Dementia in the UK – Making a Difference. 2014, OHE Consulting.
- UK, A.s.R. Women and Dementia. A marginalised majority. [cited 2020 28/10/2020]; Available from: https://www.alzheimersresearchuk.org/wp-content/uploads/2015/03/Women-and-Dementia-A-Marginalised-Majority1.pdf.
- Greenwood, N. and R. Smith, Barriers and facilitators for male carers in accessing formal and informal support: A systematic review. Maturitas, 2015. 82(2): p. 162-9.
- UK, C., Half a Million Voices: Improving Support for BAME Carers. 2011, Carers UK: London.