What is the issue?
More recently, people with dementia are participating in society in ways that, for many years, were considered impossible. People with dementia now contribute to and advise on developments in policy, research and practice. In this research, Using Technology for Safer Walking, people with dementia are advisers to the researcher team. In the process of developing the bid for funding, people with dementia contributed to the formulation of the question and were asked about how best to conduct the research. Since starting the project, a group of people with dementia and the family members, Sage, have become advisers who are contributing their knowledge and expertise on the research throughout the rest of the project, until we finish in February 2018.
What is known?
Research that includes people with experience is called participatory methods. There are various ways of facilitating participation. Participation is common in other areas of health and social care research. In some instances, people with experience lead research, and research is conducted by people with experience for people with experience. Participation is also led by academics who do not have direct experience, but ensure that the research is informed and influenced by people who do. This may include partnerships with people with experience to develop research questions, co-produce research by working together at every level of the research. In this instance, people with experience may be trained as researchers and work with the research team to collect data as well as being directly involved in the analysis and dissemination.
In this research, the advisory group works alongside the research team to inform the research design, discuss the data, prioritise the findings according to their experience, and help to disseminate the research. In this project, our advisory group will also help to produce the guidelines for other people with dementia and their families. They will also help us to review the project overall.
Participation is research is relatively new for people with dementia and it is time to develop this way of working to see what is possible. People with dementia have a lot to say about how things could be improved, and whether planned improvements actually meet needs. The value of including people with experience in research is that the research is more ethical and relevant to end users. Without people with experience involved in the research process, it is possible that time and energy are directed in activity that does not meet the needs of the targeted group.
What is needed?
Every researcher who is designing research that aims to impact on people with dementia, be it randomised control trials or qualitative work that aims to understand experience, would benefit from including people with dementia to ensure that the research is of benefit and is relevant to end users.
There are groups of people with dementia who are active in informing policy, research and practice in your local area. See the DEEP website at http://dementiavoices.org.uk/