In this post, Tom Dening (Professor of Dementia Research at the Institute of Mental Health, University of Nottingham) discusses public enthusiasm for shared knowledge around dementia.
Public appetite for information about dementia is about more than just awareness. It’s more like a great thirst, and has taken my breath away on at least two occasions recently.
On the first occasion, I had offered my services to our local independent cinema to see if they would like a Q&A session to accompany a showing of Still Alice (which is, if you don’t follow the Oscars, the one with Julianne Moore portraying an academic with familial young-onset Alzheimer’s disease). The cinema replied to say they thought the best opportunity for a post-show discussion would be their Thursday early afternoon Silver Screening.
This sounded ideal, so I joined forces with Justine, Nottingham’s first Admiral Nurse, and we set off for the cinema together. I had expected we would be in a small studio that I’d visited before. Not a bit of it. There were about 300 people and easily half of them stayed for the discussion after the film. We introduced ourselves from the little stage and then the questions fired in. What’s the difference between Alzheimer’s and dementia? Does it run in families? What can be done about it? I’ve read in the paper that X diet cures Alzheimer’s, what do you think of it? My mother/father/other relative is getting very forgetful but doesn’t want to talk about it or see the doctor, what should I do? And then some of the audience began to share parts of their own stories, either as carers or their experience of being diagnosed. After half an hour, we closed the forum but then we were thronged by individuals who wanted to ask us more questions.
The second was an evening earlier this week, where I had been encouraged to speak to an evening meeting of the Southwell Medical Users Group. Southwell is a delightful place, famed for its Minster and its workhouse (an early experiment in social care for the elderly, I suppose). It has 5 pharmacies, 2 specialist butchers and one of those Tardis-like handyman stores that stocks everything, and apart from a small Boots and the Co-op there is a refreshing absence of chain stores.
I had planned to attend with a colleague from the East Midlands Clinical Research Network’ , but as we’d had to change the date she had craftily retired in the meantime, leaving me to do it alone. However, one of the team offered to come along with lots of material about joining Dementia Research, and we made good use of the opportunity. The venue was a Methodist chapel and by the time I started the audience had spread into the upstairs gallery. After I finished talking – the talk contains one joke with a slide of the Village People saying ‘Why MCI?’ – there was again a full range of questions. I was impressed by the intensity and sophistication of many of these. We had an interesting discussion about how music is a good brain tonic and how, if the effects brought about by music in dementia were a drug, it would be available on prescription. Again, we discussed treatments, diets, activities, dementia in the media, etc. The people who came to the stage afterwards often had queries about people in their families.
These aren’t the only examples of talking to the public about dementia, but I describe them to give a sense of the demand there is for this sort of information. Perhaps the message I’d want to put across here is to encourage BGS followers is this: whatever else you’re doing, make sure you talk to the public!
Image credit: Sir Tony Robinson taking part in an Alzheimer’s Society campaign for Dementia Awareness Week.