In the disability field, it is increasingly the case that people who use services, rather than professionals, have control over the research process. They plan and undertake research, and interpret the findings.
In the ‘dementia world’, DEEP – the UK Network of Dementia Voices which iD hosts – is growing rapidly and now comprises almost 100 involvement groups of people with dementia. We have realised for a while that DEEP provides the potential for a new approach to research delivery that is led bypeople with dementia.
Within DEEP people with dementia are already acting as researchers (even if not defining themselves as such) e.g. by: identifying research priorities, testing out methodologies to collect data,and analysing data to produce conclusions. One great example is the ‘Our Right to Get Out and About’ project which involved three Yorkshire DEEP groups (see photo). We’re keen to explore with DEEP how research knowledge is acquired and applied in a way that feels relevant to people’s own lives, rather than being purely driven by the academic research agenda. In other words, to develop an alternative research involvement framework.
So we are thrilled that the BIG Lottery Fund has awarded us over £700,000 to kickstart a ground-breaking new initiative, ‘Dementia Enquirers’.
The aim of the 3 ½ year project is to develop a new approach to research, or ‘enquiry’, that is led and controlled bypeople with dementia themselves.We will support groups to identify research priorities,and, helped by small grants,to plan and undertake their own research. The project will also explore with people with dementia the lessons that emerge from their work, and this learning will be widely shared. University researchers and others may be involved as advisors, or have specified roles within the projects.
Rachael and Philly will be co-leading this work. We are so proud to have been awarded the grant, and excited to be undertaking such ground-breaking work. We are confident that the project can influence the prevailing approaches in research – while bringing new respect for the skills, expertise and resilience of those who are living with dementia.
For more information contact Rachael on 01392 420076 or rachael@myid.org.uk.
