Case study: “Anyone who takes part in research is giving something of themselves”
On the sixth anniversary of Join Dementia Research, James Baillie, the service's Champion for the North Thames region, talks about his experience of caring for those who live with dementia.
James Baillie was driven to learn more about dementia after his father-in-law Costas Michael was diagnosed with vascular dementia.
“My father-in-law initially went to Moorfields Hospital with an eye complaint in 2017. That led to scans at a memory clinic in 2018 and the diagnosis,” James explained.
“It was then I decided to study a range of online courses, and they helped me to understand the different kinds of dementias and their effects.”
It would not be the only form of dementia that James would be exposed to. Initially volunteering with the RAF Association – his father was in the RAF - he continues to act as a befriender to Norman Enders, who flew Harvard aircraft in Zimbabwe (which was then known as Rhodesia) during the Second World War. Norman, who has Alzheimer’s, has just turned 96.
James said: “Norman's and my father-in-law's dementia symptoms were very different. My father-in-law deteriorated quite rapidly in terms of his physical condition and I was very much involved as a carer – assisting him out of bed, bathing and dressing.
“Norman's physical health deteriorates at a slower rate, but his short-term memory recall is impaired because of Alzheimer’s.”
Norman celebrated his 96th birthday on 17 February with a virtual call from Sir Iain Duncan Smith, MP for Chingford and Woodford Green, after James approached former Conservative leader. Sir Iain is also involved in Royal British Legion/RAF association branch Chingford, where Norman is a member.
James initially found out about Join Dementia Research after undertaking the NIHR's Massive Open Online Course (MOOC) 'What is Health Research?' in spring 2020. In August last year, vascular dementia took the life of his father-in-law.
A practising Christian who holds a Master's degree in Theology and is working towards selection for ordination, James said: “My faith is integral to my life, and research and faith both seek, in a very real practical sense, to give of oneself in participation and service to another; it is about contributing to hope.”
James, who lives in Haringey, north London, is Join Dementia Research Champion for Clinical Research Network North Thames.
Join Dementia Research Champions are a group of people from around the UK, with and without memory problems, who care about dementia research, and want to play a role in accelerating progress. They have volunteered to raise awareness of the importance of clinical research and Join Dementia Research in their communities and at local events.
Since the launch of the service, 50,000 people have signed up to JDR and there have been 48,000 enrolments onto studies through the portal. Since the start of the pandemic, 16,000 people have enrolled onto studies through JDR.
James regards the six years of the Join Dementia Research portal as indicative of its importance as a resource.
He said: “The demand for dementia research is rapidly increasing, reflecting the accelerating prevalence of dementia in society. It is crucial that more research is conducted because we have an ageing population and dementia is now the leading cause of death.”
In his capacity as a Join Dementia Research Champion, in which he has acted in since May 2020, James has been working towards establishing a dementia carers' respite group at his local church and is scheduled to speak to an assembly of clergy at the Church of England Deanery of Haringey in the near future.
He said: “Anyone who takes part in research contributes not only their time; personal involvement in research towards finding a cure means that they themselves might be a beneficiary in the future. It's vital that more people put themselves forward for research.”
To learn more about the Join Dementia Research service, visit the website.