Older People and Quality of Life Project
- develop a survey which focuses on the main quality of life ‘domains’ and asks older people, many of whom will have dementia or be carers at some point, how they would describe quality of life for them
- hold focus groups through our Age Scotland Member Groups so that older people, including those with dementia and carers, can talk about what quality of life means for them
- ask questions through a national survey that find out how older people think they will secure that quality of life in later years
- gain a better understanding of whether older people are aware of how they can prepare to have a good quality of life, even if they have dementia or are a carer
- gain a better understanding of how older people think services could contribute to their quality of life, and whether or not they know how to access services
- gauge awareness of older people’s knowledge and understanding of self-directed support
Where a person lives has a direct impact on quality of life, as does their access to suitable transport, timely access to services (including legal services) and early diagnosis of dementia.
There have been quality of life studies in the past but none that have been involved older people with dementia as co-researchers.
Age Scotland and the Faculty of Social Sciences at the University of Stirling were funded by the Trust to conduct research on quality of life in later years, to give voice to older people on what they believe most impacts their quality of life, and what they would want their quality of life to be if they ever had dementia or were a carer.
This work enabled older people and services to think about how to plan better for later life in order to maintain a good quality of life for as long as possible.
We believe that this research will be able to add value to every other piece of work we fund at the Trust.
This project used an innovative methodology based on the principle of ‘co-production’. Co-production is different to most forms of research because, rather than seeking to carry out research ‘on’ or ‘about’ people, it seeks to conduct research ‘with’ people.
Within the project, the necessary training and support was provided for people (aged over 50), including people living with dementia, to become “community researchers”. They were trained in the use of a variety of research methods, including visual methods analysis, focus group methodology and survey design.
Community researchers worked in small teams, alongside researchers at the University of Stirling, to address the following questions:
- What is the essence of a good life in later years?
- What do older people think is needed to achieve/maintain the components of a good life?
- How might the essence of a good life differ if an individual develops a long-term condition (such as dementia) or if they become a carer?
These teams worked together in gathering visual representations of a good life; in running community discussions; and in developing a survey to be distributed across Scotland. Community researchers had a central role in helping to make sense of the information gathered in the project, and in identifying the key messages that should be reported from the project.
5 ‘community research teams’ were recruited. Each team was made up of volunteers, who jointly carried out research about the essence of a good life in older age.
Using their training, community team members were enabled to go out into their own communities to collect research data, and then return to the team for data analysis. During analysis sessions, teams discussed the data collected, before analysing this data for major themes and issues informing what a ‘good life’ means to older people in Scotland.
There were five geographical areas in which community research teams were active:
- Stirlingshire, Clackmannanshire and the Northern Central Belt. This site was centred on the Stirlingshire area, with workshop sessions being based on the campus of the University of Stirling.
- The Scottish Borders. This site was centred around the town of Galashiels, due to its location in the centre of the Scottish borders. Volunteers in this group covered a wide area across the Scottish Borders.
- Aberdeenshire and the Central and Eastern Highlands. This site was centred on the city of Aberdeen and its surrounding area around the Northern Cairngorms, and across to Inverness.
- Glasgow, Kilmarnock and Ayrshire. This site focused on the Greater Glasgow area and along Scotland’s south west coastal strip towards Kilmarnock and Ayrshire. The site was based in Kilmarnock, but included members from Ayrshire and Glasgow.
- Perth and Pitlochry. This site was focused on the southern and Eastern Highlands and north of the Firth of Forth, and was centred on Perth and Pitlochry.
Focus groups were also conducted across Scotland.
Key findings were launched at a busy Parliamentary Reception in September 2017, hosted by MSP Bruce Crawford. The full report launched on 1st October, to co-incide with International Older People's Day.
Outcomes we'd like to see
We plan to use evidence from this project to influence the Scottish Government and other policy makers and service providers, especially in relation to the Joint Integration agenda, Reshaping Care for Older People agenda, self-directed support, and the National Dementia Strategy.
We hope that this project will help to shape future policy and practice, through supporting the voices of older people to permeate more fully in discussions about what makes a good life in later years.