Last week I had the pleasure and privilege of attending the 8th Annual UK Dementia Congress, held in Nottingham. I was running a bit late but determined to get there in time to hear the debate. It was an issue very close to my heart and I always like to “explore beyond the soundbite.”
“This house believes that dementia should be diagnosed as early as possible” has huge Whose Shoes? potential….
According to whom? The person or family member who is concerned about memory loss or unexplained changes in behaviour? My Mum, going to see her doctor about her knee, (or worse still, a more serious or sensitive problem) but potentially questioned about her memory because she happens to be 91? The person who might be misdiagnosed or worried unnecessarily? The GP under pressure to meet government targets or financial incentives? Psychiatrists? Researchers? Pharmaceutical companies? Dementia charities? Suppliers of ‘dementia products’…? The list goes on. This is a truly multi-faceted subject.
Each guest blog in my “in my shoes” series stands alone as a statement or story from an individual perspective. It is like a giant jigsaw with an unknown number of pieces, but each piece adds an important new dimension. I would welcome other perspectives on the issue of dementia diagnosis as it is such an important and topical subject.
Today, I am delighted that Dr Martin Brunet, founder member of Grassroots GP, has seen my blog as a forum to share and build on his thoughtful presentation in the opening debate last Wednesday…
Well, the 8th UK Dementia Congress has now passed, and what a stimulating experience it was too! It was great to make new connections, hear so many different perspectives, and to try to imagine myself in someone else’s shoes for a while. I was especially struck by the impact in the Whose Shoes? workshop of doing a little activity about things that mattered most to me in my life, and then exploring how I would feel to live without one or more of these, especially if I had no choice. It made a striking point that someone affected by dementia might not get the privilege of choosing what to give up.
I was delighted to be invited to take part in the debate on the Tuesday night, with the motion “This house believes that dementia should be diagnosed as early as possible.” I opposed the motion and received the rather alarming news just moments before the debate started that the initial vote of congress showed only 11 out of the 225 people in the room agreed with me! For the record, 73 were undecided and 139 in favour of the motion.
The more I think about it, however, the more I feel this is how it ought to have been. The reason why most of the delegates were at the congress was not because they have been involved in the centre of this debate for the last year as I have, but because their lives have been touched by dementia in some professional or personal way, and they are passionate about it. If someone is cares deeply about dementia, shouldn’t we want their default setting when asked about diagnosing dementia early to be ‘yes’?
What was both interesting and humbling, however, was the willingness of so many people to carefully listen to all the arguments, keep their minds open and to challenge their own views – something we rarely see in the politicians and policy makers that have so much influence in designing the way care is delivered. The vote at the end of the debate was very encouraging to me – by which time I had 85 votes to keep me company, with 56 undecided and 97 in favour of the motion – but while this means I must have at least been reasonably coherent in making my case, I think this is far more a testament to the spirit of open-minded questioning that was present among the delegates, and the acceptance that this question is far more complex than at first it seems, than to any persuasive powers on my part.
What was most encouraging to me was the number of people who spoke to me after the debate to say how much it had made them think, how maybe that nagging doubt they had had about hitting government targets for diagnosis rates had some justification after all, and how their heartfelt desire to keep the person at the centre of care had as much to do with shaping health policy, as with their own personal interaction with people who live with dementia.
For anyone who missed the debate, you can certainly catch up with my side of the discussion by taking a look at the posts I have written about dementia on my own blog. As someone who has had a lot to say on this subject I have been dismissed as one of a ‘few GPs who are not on board who are making a lot of noise.’ I know that there are many who care about dementia who are just as informed as I am, if not more so, and have formed a different opinion to mine, which I respect deeply. However, I don’t believe I am isolated here and perhaps the outcome of this debate is a testament to that. I would really like all those who care about dementia to get involved in this discussion, and to make their voices heard by the policy makers. In particular we must argue again and again, until we are hoarse, that the emphasis must be on reducing barriers to a diagnosis for those who need it, followed by excellent care and support, and that any proactive measures to increase diagnosis rates must be properly assessed for both harms and benefits before they are implemented.