Involving people who are living with dementia and people who care for them is essential for this project. It is hard to imagine how we could possibly start designing things for people to use without getting their help, preferably at every stage of our work.
We’d like to explain how people with dementia and carers have helped with the research in the MinD project.
We are very proud that Alzheimer Europe (AE) is one of the partners in this project. AE is a lobbying organisation promoting dementia awareness, care and research. It was formed in 1990 and currently has 37 members (national Alzheimer organisations). AE aims to change perceptions, practice and policy to improve the quality of life of people with dementia and their carers. In 2012, AE set up the European Working Group of People with Dementia, a group composed entirely of people living with dementia, who ensure that AE represents the interests, rights and wellbeing of people with dementia as effectively as possible.
AE, with the University of Luxembourg, is jointly hosting the research visits to Luxembourg throughout the MinD project. In 2017, we met with members of the European Working Group to feed back our results so far and also to gather their views on priorities for design. This has been immensely helpful in shaping the themes for design that we are working on.
One of the UK partners in MinD is the Nottinghamshire Healthcare NHS Foundation Trust (NHT). NHT is one of the biggest mental and community health organisations in Europe. The Nottingham MinD group is based in the Institute of Mental Health, which is a joint enterprise between NHT and the University of Nottingham.
We have two public involvement groups helping us with this project. One group works with the Centre for Dementia in the Institute of Mental Health, and the other group works with a technology research group, called MindTech, who are also based there. One of our involvement team, Dr Julie Gosling, has joined the MinD research group and will be going on some of the research visits in 2018 and 2019.
So far, NHT has hosted three visits from MinD researchers. During these visits, for example, we have organised a one-day workshop on how people with dementia can get involved in research, we have had another workshop on textiles and dementia, and we have had other public involvement meetings about the research.
During the design and evaluation phases of MinD, we will organise several public involvement events to consult people with dementia and carers about our design ideas, and hopefully to test out some of these ideas at home.