Adults lacking capacity are under-represented in research; involving this group in research is fraught with challenges, including researcher uncertainties about how to carry out capacity judgements. As a result, the evidence-base and guidelines surrounding their support needs is inferior and lacking in detail. COVID-19 has exacerbated existing recruitment challenges for dementia researchers, with digital literacy and accessibility posing greater risks to inclusion.
In the last few years there have been huge strides to help support the inclusion of people affected by dementia in research. Dementia Enquirers is a DEEP (the UK network of dementia voices) project, aimed at developing a new approach to research, or ‘enquiry’, that is led and controlled by people with dementia. The four-year project, started in October 2018, has developed several practical guidelines, principles and standards for involving people affected by dementia in research.
In other studies, reflections from researchers conducting interviews with people affected by dementia highlight key processes needed to help support inclusion. On the D-PACT study, researchers identified the need for flexibility around timescales, more naturalistic and conversational approach, consistency of the same researcher, and the importance of involving the carer1. Researcher-related factors identified were, for example, the importance of having two researchers present for the interviews allowing for better reflection and flexibility, as well as researchers having access to ongoing training, supervision and peer support when engaged in the often challenging, emotionally and cognitively demanding process of judging capacity in research with people with dementia.
The involvement and participation of people affected by dementia is central to our work at the Alzheimer’s Society, from sitting on interview panels in recruitment, to volunteering, and research involvement. Our 382 Research Network volunteers make up a formidable team who have a personal connection to dementia – as carers, formal carers, or living with dementia. For over twenty years, their experience has helped to ensure our research is relevant, credible and can transform the lives of everyone affected by dementia; they are the golden thread that threads through all our work – a dynamic and empowering network that feeds into all our research activity. We encourage researchers to consult with the Network throughout the research journey, from the funding application to the implementation process.
Another area that’s benefited from this commitment to co-design and co-development is CHARM, the Alzheimer’s Society-funded ‘Care Home Action Researcher-in-Residence Model’. In this, experienced researchers support care home staff, residents and relatives to design and carry out their own research projects. Care homes were also involved in designing how this model of care homes and researchers working together would work in practice.
“It turns on its head how research is usually done, with huge benefits… The care homes have such great expertise and ideas, and the projects we’ve completed have been really wide-ranging, from how to best design a garden to the impact of the pandemic on staff”,
Project Manager Isabelle Latham from the University of Worcester.
‘It has been a true collaboration. We have been far more involved than in any previous research conducted in our care homes. The projects helped us to stop and reflect on what really matters, and to listen and involve… [it] also meant that the research was completely relevant and meaningful to the care home, which made it so much easier to adopt what we learnt from the findings into practice.’
April Dobson, Head of Dementia at Hallmark Care Homes, whose Anya Court home in Rugby worked on research projects relating to mealtimes and a positive culture of care
Involving people affected by dementia in research can pose unique challenges, however that should not prevent or discourage involvement from the outset. The Alzheimer’s Society prioritises and implements the involvement of people affected by dementia in all stages of the research process. It is great to see researchers, like those on the D-PACT study, reflect on methods to improve involvement, particularly where additional challenges such as remote interviewing are present.
The RDS has experience in supporting researchers to engage with under-represented groups, from dementia, learning disabilities, and mental health to traveller communities, refugees and prison populations, please contact your local RDS to find out more and help improve your research plans.