Reflections on being involved in dementia research as a former carer. A blog by John Thurman*
During the day between attending a conference with members of the DEMCOM research team, and writing this blog, I visited my sister Catherine in her new care home. Her dementia is severe: she’s lost most of her language and many of her inhibitions; can recall the names of her school friends from the 1940s but forgot that her son came to see her the previous day. She tucked in to a large plate of toad-in-the-hole with both a good appetite and surprising manual dexterity, but made it clear that the idea of taking a drink was just ridiculous!
I left thinking about how different things were when I cared for my wife Jane, nearly ten years ago when she was at a similar point on the dementia pathway. Jane kept her language longer than Catherine, but couldn’t feed herself. She laughed more, but could walk very little. So many differences, and so many reminders that no two people with dementia are the same.
Being involved in dementia research as a former carer has been enlightening, fascinating and exciting. The environment feels dynamic: no longer is dementia the Cinderella of medical research. When Jane died in 2011, the Alzheimer’s Society made £2m worth of research grants per annum. That figure is now £10m. 2017 is also the year that the Dementia Research Institute was launched, with a seven year budget of £250m.
With the efforts of all those researchers (and with the help of some serendipity!) I feel sure that a cure will eventually be found. It the meantime, work aimed at giving the thousands of people living with dementia, for whom a cure will not come in time, a better quality of life, is necessary and a source of encouragement. That’s why dementia friendly communities are so important and why I wish the DEMCOM team every success.
*John is a PPI member of the DEMCOM research team. John has a role in attending team meetings offering invaluable insight and advice from the carers perspective, providing feedback on research documents, and has worked with the wider team to complete data collection for Phase 1 of the DEMCOM project.
The Dementia Friendly Communities: The DEMCOM evaluation project was funded by the NIHR Policy Research Programme, PR-R15-0116-21003
Department of Health Disclaimer:
The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS&DR, NIHR, NHS or the Department of Health
For more information on the DEMCOM project page, please click here