Telling

Lois and I started the other day at the dementia buddy cafe in Salford, discussing our work there with Dr Caroline Swarbrick. Caroline is an unusual doctor, she presents unlike just about any medical person I've met, in a glamour of gothic-ness. Her attitude is fixed, in as much as it is fixed, to wide open.  This blog is a summary of our conversation from my notes. I write it because chatting with Caroline, amongst the bustle and palaver of the morning group, seemed to bring great focus to our work later in the day.

We talked through what we've come across in our many conversations with folk at the buddy cafe. What's being said - and what isn't. The emerging themes seem to be the very basic human issues of identity (lined to memory), loss, isolation, friendship. We've consistently asked questions about the medical service that people receive when they've had a dementia diagnosis, or are waiting for one. But while this has been discussed, especially with carers, the main business of the day is more to do with friendship and peer support. That is what people come to the cafe for and they vote with their feet to get it. This place is very popular indeed, filled with laughter and a certain subtle bonhomie. It isn't about having a medical label "that equates dementia with an absence of capacity" (Caroline) instead it focusses on ability and on connection.

In a way, what's happened is that we set out to find one thing (details about medical services) in order to discover where the gaps are - and people have indicated exactly where the gaps are, by talking about what they WANT instead.

Caroline commented: "It's telling that people don't talk about the medical service particularly. It's not interpersonal. They're given a diagnosis and some pills and told to go away. It doesn't fit with them, with their lives as they're living them or understand them."

Dementias affect the core of what it is to be a person, stripping away memories and the very 'machinery' of understanding. This simply can't be described in terms of pill regimes. What people here seem to do in response is support one another and confirm identity, as we all do, by greeting, telling stories, sharing common memories, and having a cup of coffee between. The buddy cafe is a replication of 'normal' life - you can still have a coffee morning with your friends and tell each other the gossip. Because perhaps it's more than just gossip. Perhaps it's this that keeps us alive.  

"...it's a difficult thing to describe


one of them things it comes and goes

and most of it goes." (Dave, poem extract)

Harry at the Buddy Cafe