A personal reflection on dementia, research, and advocacy by Simon Denegri OBE, Chair of the CTU Network Executive Group, Chair of Dementia Disco, and Chair of Sense About Science.
My story with dementia begins as a teenager in the late eighties. My grandmother was staying with us to give my aunt, her carer, a break. My parents had gone out after helping my grandmother to bed. There was a loud crash from the bedroom next door to mine and I found her lying on the floor, confused and disorientated. To this day I remember the frailty of her body in my arms and her vulnerability as I placed her back in bed. It was the moment when dementia invaded my young world with shocking reality.
That is the beginning of my story with dementia and I am choosing to tell it – as I hope so many others will – as part of Dementia Action Week and the Alzheimer’s Society’s ‘Forget-Me-Not campaign this week (18 – 25 May).
My personal experience of dementia has had a strong bearing on my career from the early nineties when I was the Alzheimer’s first parliamentary officer and public awareness of the disease was only just stirring. Right up to the present day and my role as Chair of Dementia Disco, a small but rapidly growing charity which aims to use music to inspire memories, conversation and friendships in and between people living with dementia.
Dementia was my introduction to research and to public involvement. The Alzheimer’s Society was the first charity to pioneer in the nineties involving patients and carers in decisions about research funding. Seeing this unfold had a formative influence on me: public involvement is about bringing social justice and democracy to one of the most important human endeavours – science – and making it more relevant to society. I am lucky to have had the chance to make this happen more widely in the UK and globally with some amazing patient partners, clinicians and researchers.
It is therefore a happy coincidence that this week we also celebrate International Clinical Trials Day (ICTD) on 20 May. For some time ICTD has been used by NIHR, charities and members of the UK Registered CTU Network as well as many others to raise public awareness of the importance of clinical trials. More importantly to encourage people to volunteer to take part in studies. Hundreds of thousands of people are now signed up to NIHR’s ‘Be Part of Research’ matchmaking service which enables patients and researchers to connect about opportunities. But we need many more volunteers in research in the future and it is important that the Government has made a commitment to make this easier to do as part of its NHS 10-Year Plan.
The dementia community has again been a pioneer here. It is eleven years since Join Dementia Research was set up. Over 100,000 people have registered and hundreds of studies have recruited volunteers by using this service. It has undoubtedly been an important element in the exciting developments now taking place in UK dementia research. We may still have a long way to go before we cure dementia but research and improvements in treatments and care mean that many people can now live fuller lives for longer – perhaps even connect with others at a Dementia Disco.
In recent months there have been several public attitudes surveys showing that public trust in science remains high but is fragile. Also that they are often overwhelmed by the way in which science is communicated. But that telling stories enable them to connect with and see its importance to their life and that of their community.
In dementia, in clinical research, across science in general we must continue to tell stories which bring opportunity and hope to our fellow human beings. It was a pleasure to share my story and I hope you will pass it on. Better still please tell your own story.
Simon Denegri OBE
