I personally find the term ‘expert by experience’ a bit “clunky”, but I am in absolutely no doubt that the people who know about dementia the most are those living with the condition, and they know the most in their specific time and place. Also, people closest to them, often ‘carers’, often know very many things which you’d never discover in any textbook.
You will know that I have a huge amount of admiration for the work of Dementia Alliance International. This is a mantra often quoted by them, which is undoubtedly inspirational.
I recently had experience of how the acute medical service works in a busy London teaching hospital. This was interesting to me in my dual identities as a family person helping to care and support and as an academic physician in dementia.
There were, in my view, islets of superb care – for example foot massage to improve the wellbeing of inpatients on the hospital wards. They were examples of care which was, arguably, organised from the provider not recipient perspective – like people with memory and attention problems being taken off for investigations without warning. I personally hoped that visiting hours could be more flexible.
I found, however, that senior members of that teaching hospital were very keen to contribute to learning as an organisation. This indeed surprised me.
I intend to write a book for junior doctors on principles of dementia care.
This book will be made available free-of-charge. It will be open source.
I think it’s fair to say that such a book has to be contextualised at peace with the rest of their professional training.
On the other hand, I don’t wish to produce yet another carbon-copy handbook or guide, particularly when there are so many outstanding initiatives (such as John’s Campaign and dementia-friendly wards) which are already making a difference bit by bit.
If you’re a person with dementia, or carer, and would like to say what you think junior doctors should know about dementia and dementia care, please complete the short survey here.
The survey will take about 5-10 minutes.
Thank you very much.