Making dementia a priority locally

I didn’t know what to expect. I have been to various conferences on dementia run by dementia charities in the past. They seemed to be stuck in a particular groove, with the same over-exhausted catchphrases and ambitions.

I went to the Alzheimer’s Society annual conference yesterday just round the corner from Victoria Station in Westminster, not knowing what to expect. I went there with a completely open mind, in a very good mood, and with a highly positive outlook. I was not to be disappointed.

The theme of the conference was making dementia a priority locally.

It was the first time where I had been to a conference since my mum had been diagnosed with dementia in London in 2017. She died in the heatwave last year. I had probably last gone to a my last dementia conference around 2016.

I have a background in dementia, having published several books on it, papers on it spanning more than a couple of decades now, and various talks at national and international conferences.

It was the first time I had seen Prof Paresh Malhotra. for about twenty years. I have a lot of time for Paresh as we are exact contemporaries, and I remember him from about twenty years ago as a junior in London.

The policy marked a clear and material step change away from the vagueness (for me) of ‘dementia friendly communities’. I think the pandemic saw a clear breakdown of this policy where ‘dementia friends’ could not be relied upon to look after the loneliness in society with dementia.

It was super to see Chris Larkin who’d been up at the crack of dawn to be there.

Next year the conference will apparently focus on equality, diversity and inclusion. There was an outstanding session on this yesterday which put a lot of meat on the bones here, providing detail touching upon the complex issues of race and sexuality for example. There is still much to do – for example to look at other protected characteristics, perhaps especially liability.

There was much discussion of diagnosis. For me, the ‘secret’ about diagnosis is not the technology, although innovation is to be welcomed. It is simply the infrastructure of following people up reliably, making sure that they are not lost within the system. And we have a duty to make sure that we can plan far ahead, which does unfortunately need precise details about the workforce for the NHS and social care. It is unlikely that someone who wants a diagnosis of dementia, especially from a BAME background, will want to face the ‘8 am phone scramble’ for example to just get an appointment. We need to align policy for dementia and delirium more cogently.

I first met the super clever Marie Cooper when she was the first to do work every else was doing – before mum even had been diagnosed with dementia even.

I think the Events team of the Alzheimer’s Society have to be massively congratulated. I found John and Zula Suchet’s talk as ambassadors moving, and I cried during the Dementia Choir session thinking of mum all the time.

I felt that the atmosphere and the culture of the Alzheimer’s Society in a really good place. Kate Lee CEO was exuding great vibes all day, sporting new Converses, and correctly proud of her charity.

I’ve thought a lot about ‘living with dementia’. I think the world of Chris. I think to be blunt it is an injustice to think of dementia as only the negative stereotypes in the final stages. None of us know what is going to happen the next minute. Very voice has to be at the table. Leave your assumptions at the door.

The conference had the feeling of a wedding reception to me. People I can call my friends, especially Adelina, were great to see – and Adelina’s outputs on dementia research are second to none.

I think this was the best dementia conference I’ve ever been to – with a real attention to detail, including high standard research presentations, definite inclusion of the lived experience, and attention to detail including accessibility of the built environment.

Hilda Hayo, chief of Dementia UK, was there. It was lovely to see and to chat with her.

A real credit to Kate Lee, the events team and the entire Alzheimer’s Society. I’m so proud of the Society at the current time, working together