SENSE-cog: Promoting health for eyes, ears and mind
Involving people with dementia, vision and hearing difficulties in all stages of research
Overview
Seven in ten Europeans over the age of 65 live with sight or hearing difficulties and over two-thirds live with depression or dementia. When combined together, the challenge of such dual or triple impairments is far greater than that of the individual conditions alone.
SENSE-Cog was a European multi-site research programme (2016-2020), which investigated the combined impact of dementia, age-related hearing and vision impairment. The study, led by The University of Manchester, involved academic and industry partners from eight countries. The project aimed to develop new tools and at-home support that could improve quality of life and help optimise health and social care budgets and resource allocation across Europe.
Vocal led the public involvement and engagement work for this study. We ensured people with dementia and vision and/or hearing difficulties, who historically have been excluded from research, were fully involved, with their care partners, at all stages of the project.
If we could reduce disability due to hearing and vision impairment, there is huge potential to improve mental well-being and even delay the deterioration of dementia.
Dr Piers Dawes, Audiologist and SENSE-Cog co-lead, University of Manchester
Our approach
We developed a cross-European network of Research User Groups (RUGs). The groups included patients, study participants and carers.
The RUG members received research awareness training so that they could input effectively into SENSE-Cog research.
We evaluated the impact of the training both on the RUG members and on the researchers.
We shared the results of the study widely with a network of community and voluntary organisations in order to reach patients and carers who could benefit from the findings.
Impact
Four Research User Groups were set up in UK, France, Cyprus and Greece.
34 RUG members completed research awareness training.
Evaluation of the research awareness training demonstrated that the contents were applicable, useful and relevant to the RUG members’ role within the research.
10 researchers completed patient and public involvement training.
There was considerable evidence that input from the patients and carers had influenced the decision making within the research.
Researchers reported that working with patients and carers had given them valuable insights into the impact of their work on people living with dementia.
Two academic papers focusing on involving patients and carers and a further two are currently in press.
