Drawing on real-life experiences of dementia to design research

Most people with dementia want to remain living in their own homes for as long as possible. That’s why Alzheimer’s Society is funding research to better understand how families and professional carers can be helped to care for someone at home. 

This is being used to develop personalised support sessions for people affected by dementia as well as specialist training for professionals. 

NIDUS, the New interventions for Independence in Dementia Study, includes two programmes. NIDUS-professional has been designed and developed with the support of home care workers and other professionals, while NIDUS-family has involved people affected by dementia.

Detailed input 

Margaret Ogden is part of our Research Network – volunteers who use their personal experiences of dementia to ensure that our research is relevant and credible. Margaret cared for her grandmother, who had Alzheimer’s, and more recently took over the care of her uncle, who has vascular dementia. 

‘From the beginning, there’s been an opportunity to be involved with different layers of NIDUS-family,’ she says.

‘I’ve been part of the Community of Interest, Project Management Group and Implementation Group – my involvement has been getting more intense and I’ve been giving detailed input.’ 

Margaret has used her experience of dementia to highlight issues about the health and wellbeing of carers. 

‘I made the point very early on that, whatever support we can give carers, there may be occasions when it’s just not possible to keep a person with dementia at home,’ she says. 

Margaret was not only involved in the design of the research, but also the development of the strategies that have stemmed from it. She helped to select and train people who’ll go on to run support sessions by playing the role of a carer needing help. She also co-authored a research paper for the first time. 

‘For me, NIDUS went way beyond the traditional type of opportunities,’ she says. ‘The diverse activities offered made it really special and very meaningful. 

‘I know that my involvement has had an impact, and I feel that the whole of the group’s input has been really valued, and suggestions taken on board.’

Strongest voice 

NIDUS is led by Professor Claudia Cooper at UCL in London, who values the input of volunteers such as Margaret. 

‘In every area where we involved people with lived experience, it really enriched our conversations and work. I learned a lot as a researcher,’ she says. 

‘When the pandemic hit, they were very supportive as we adapted to an online approach.’ 

‘We’ve been able to develop interventions that contain the understanding of family carers, so if they are effective they’ll be able to be used.’ 

Golden thread 

Research Network volunteers like Margaret are central to the work and culture of Alzheimer’s Society, explains Bronte Heath, our Senior Research Evidence Officer. 

‘To have the greatest impact for people affected by dementia and ensure that all of our research activity is accurately identifying their needs, we need to hear from those who have lived through the experiences themselves,’ she says. 

‘The Research Network is the golden thread – a dynamic and empowering network that feeds into all of our research activity.’

Huge benefits 

Another area that’s benefited from this commitment to co-design and co-development is CHARM, the Care Home Action Research-in-residence Model. 

In this Society-funded approach, 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,’ says Project Manager Isabelle Latham from the University of Worcester. 

‘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. 

‘They’ve been really creative in thinking of how to involve residents, families and different staff, and how best to share their findings.’ 

More involved 

April Dobson is 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. Both will directly benefit residents living with dementia. 

‘It has been a true collaboration. We have been far more involved than in any previous research conducted in our care homes,’ she says. 

‘The projects helped us to stop and reflect on what really matters, and to listen and involve. 

‘The approach 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.’