'Join Dementia Research' is a DH-funded service that allows patients with or without dementia to sign up for research studies into the condition.
People sign up online or via telephone, consent to be contacted by researchers with details of studies in the area, and can decide to take part on a case-by-case basis.
GPs looking after dementia patients could be part of the drive to encourage more volunteers to take part in vital research, Professor Steve Iliffe, former GP and professor of primary care in older people at UCL, told GP.
‘Practices that have an interest in dementia, for example if they have a care home they provide medical care to, might think about encouraging people they know to join the registry,’ he said.
‘Perhaps if you see someone for a dementia review, ask them if they’ve heard about it and whether they should think about joining it.’
‘If people know about it and they’re interested – and a lot of people are – they do put themselves forward to take part in research.’
Dementia research pilot
Professor Iliffe helped to develop the initiative and has used the service to recruit for his own research studies in its pilot phase.
‘The registers were the most effective and efficient way of recruiting people,’ he said. ‘Before, recruiting from clinics was really difficult and very slow.
‘There are all sorts of assumptions about people with dementia – that they’re not able to think about things – which is not true in the early stages of the disease. I was always sceptical and thought people wouldn’t be altruistic, but the older generation think of other people.’
Outside of care homes, patients may want to discuss the scheme with their GP, Professor Iliffe said.
‘Patients may turn up and say: "I’ve seen this thing in the local newspaper, do you think I should do it?" And there’ll be a discussion of the benefits of being involved in research or not, where we have to be honest and say the research study may not help you personally, but it could help others in the future.’