JDR_cmykRecently we’ve been publishing videos of researchers and volunteers talking about participating in dementia research.

‘Join dementia research’ is the new service that will connect volunteers and research staff online, allowing them to collaborate on studies around the country.

laurenyatesThe Individual Cognitive Stimulation Therapy for Dementia – or iCST – Study was a research project set up to investigate the development and evaluation of a suite of activities for people with dementia.

It was a carer–led programme designed to be delivered in the patient’s home up to three times a week in blocks of 20 to 30 minutes. The activities were very varied – numbers games, current affairs discussions and word puzzles – which are all designed to encourage the patient to remain mentally active.

Lauren Yates’ role in the iCST study was to recruit patients into this project and to train the carers on how to deliver the programme.

‘We managed to recruit 356 pairs of patients and carers across our eight research sites, which was a brilliant result’ she says. But the help that the team received from the Dementias and Neurodegenerative Diseases Research Network (DeNDRoN) was invaluable.

‘We worked with DeNDRoN to identify sources of recruitment for the study. They helped us to network with professionals and organisations who knew people who could perhaps benefit from the study’.

Lauren recognises the importance of case registers in finding patients and carers for research projects going forward.

‘Having a service where people can sign up to be involved in research is an important step forward. It will allow us to approach people who have given their consent to be contacted which, in turn, could make the whole recruitment process much easier and much quicker’

The study is currently being analysed and the results will be published later this year. The main outcomes that will be assessed are cognition and quality of life for the person with dementia but also the quality of life for the carer delivering the therapy.

Lauren is enthusiastic about the future of this study.

‘We’re hoping that the results of our research will encourage us to make the iCST materials more widely available. We would really like to adapt these tools so that they are relevant to other cultures and in geographically remote communities internationally too’.

Have you taken part in a study?

patient-carer-BDR-image1We are really interested in hearing from people taking part in studies on ‘Join dementia research’.
What would they say to others considering signing up with ‘Join dementia research’?

Please let us know if you, or someone you know, would be interested in sharing their story. Get in touch with us at comms.jdr@nihr.ac.uk.

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