The Life Changes Trust funds five peer support initiatives across Scotland. This funding came about because peer support is something which people living with dementia and unpaid carers say they most value because of the positive impact it has on the person with dementia and unpaid carers. Peer support can help keep people more socially connected, giving them confidence and motivation to participate in their communities. It can also help them to feel valued by being listened to and being able to help others with similar experiences. Peer support builds on the skills and knowledge that already exist in the community. Each project was given five years funding in 2015.
- to determine how peer support benefits both individuals and society
- to explore what constitutes good practice when delivering peer support
- to share evidence to promote greater awareness about the benefits of peer support and what works for effective peer support
Researchers at The University of Stirling have reviewed self-evaluation data provided by the five projects, funded by the Life Changes Trust, who deliver peer support. They are also conducting new research at four of these projects to engage staff, volunteers, people receiving support and partner organisations.
Peer support enables people with dementia and unpaid carers to live better lives and remain socially connected. A video has been created to highlight the different ways in which unpaid carers and people with dementia benefit from this social connection – watch it here. Social connection is layered. Attending peer support groups helps to build new relationships.
Contributing in these groups builds confidence and helps people to be involved. Sometimes this involvement extends outside of the peer support group. Fuller participation and sense of involvement comes from sharing responsibilities and helping to sustain the group.
In the coming months, we will be investigating these and other benefits through conversations and discussions with people living with dementia and unpaid carers who access the peer support projects. We are also meeting with staff and volunteers at the projects and staff from partner organisations who have worked with the projects.
This research will enable us to find out how people experience the support and understand what works well, or less well, for them. We want to learn lessons about ‘what works’ and share this information so that peer support can be as successful as possible for people with dementia and unpaid carers in the future.
The method adopted by the evaluation has been to recruit several ‘Community Researchers’ who would carry out the fieldwork in conjunction with academic staff at The University of Stirling. These volunteers were recruited from within the dementia community, being carers or individuals who had some connection to dementia.
Recruitment has not been an easy task, especially retention of volunteers who are actively involved in caring for a person living with dementia. More will be said about this later. A range of skills was sought and achieved. Several of the volunteers were trained researchers who had been involved in previous projects about dementia at The University of Stirling and have skills necessary to carry out the fieldwork. Others were already volunteering in a dementia-related project and were committed to helping where they could in researching the condition and how life could be improved for those living with dementia.
Each brought with them life skills from previous employment and volunteering such as communication skills, project skills and creative skills.
An initial introductory meeting was arranged and then a follow up meeting, where volunteers gained some knowledge of the project objectives and methods. Initially there was a high level of commitment but, due to caring commitments and the pandemic which hit in March 2020, there was a level of drop off, particularly among volunteers actively involved in caring.
Fieldwork and the Pandemic
Four projects supported by the Life Changes Trust have been identified for fieldwork. There was much discussion among the researchers about which creative methods were best to evaluate the effectiveness of peer support in each of the projects and many face-to-face, group and socially inclusive methods were identified.
All of these face-to-face methods were excluded due to self-distancing rules introduced in March 2020. The project has carried on, however, with researchers meeting online and continuing to identify methods now based on online techniques that can be conducted safely at a distance. (See ‘Lessons Learned’)
A personal observation here was how the project reacted to the pandemic. What was essentially a project about connection with dementia projects and creative methods for evaluating them became, due to the pandemic, an exercise in remote working both among the volunteers and with the projects. Essentially the evaluation project did not change but has become different in its methods of engaging people in research. In addition, we learned a lot about setting up projects like this and making them more robust against unforeseen risk.
Lessons Learned (so far):
(1) It is important to be mindful of existing commitments that community researchers may have at the recruitment stage. This is particularly true where potential researchers are interested in a subject like dementia as a result of personal experience of living with or caring for someone with dementia. Where a potential researcher does have caring responsibilities or a long term health condition, they must be actively supported to engage with the research in a way that works for them. Ultimately, though, they may feel they have to step away from the project.
(2) There are lots of creative, non-contact methods available for engaging people at a distance which are available and published on sites such as org. We were particularly impressed with a video by artist Lydia Beilby called “Create Your Own Living Archive” https://www.youtube.com/watch?v=U2Zt-tYC-V8. The techniques described in the video can be adapted to evaluate peer support within projects using such creative methods.
(3) A risk register can never be too detailed or “out of the box”. We missed the possibility of a pandemic but, at the time the project started, if we had considered it we would have rated the probability very low and impact extremely high and, I am sure, we would have decided to live with the risk. As it happened, a flexible approach to project methodology has allowed us to react to the pandemic and create new methods to carry on with the project.
(4) One of the major lessons learned is “learn the lessons”. Many of the new methods developed out of necessity will be useful in future research and will be written up, developed and used in future studies regardless of the situation. We also hope that the methods we use for engaging research participants online will be useful longer-term for the peer support projects who may find the creative resources adopted in the evaluation useful for supporting and delivering peer support at a distance.
Carrying out an evaluation during the pandemic will allow us to gather unique insights about the role of peer support and factors influencing its delivery during a period of acute crisis, what this may mean for peer support, and its effect regarding loneliness and social isolation.
Dr Paul Lyden is a retired IT consultant and Project Manager. He became involved with dementia when his oldest friend was diagnosed with the condition. Paul volunteered with Alzheimer Scotland at an allotment in Dumbarton as he is a keen gardener. He still works at the allotment (pandemic permitting). Paul has a background in research and is keen to get involved in research which might help. He is volunteering as a Community Researcher.
Dr Jane Robertson, Lecturer in Dementia Studies in the Faculty of Social Sciences at The University of Stirling, is leading this project. For further information about the evaluation, please contact Jane at firstname.lastname@example.org