To really communicate with someone with dementia you have to be alongside them, focussed on their world, going at their pace, it just doesn’t work otherwise. There’s a word ‘outpacing’ which refers to how people with dementia get left behind when life goes at its usual fast speed, making it hard for people to keep up. It happens to other people too. It is the reason why co production, collaboration and person centred working matter.
If you’ve experience of dementia in any capacity you’ll know that things just don’t work if you don’t slow down and focus on the moment. It’s a lesson many of us have learnt the hard way. Trying to rush Mum out to the Day Centre so I could get to work increased both our anxiety to unbearable levels and things quickly fell apart leaving us both late and emotionally exhausted. I had to learn patience and put my needs and timetables into second place so we could both get where we needed to be, which was of course the same place place – Mum having a great time with her chums at the Day Centre.
I had to do things differently. Logic and reason didn’t work. Mum could pick up every hint of anxiety and sense of ‘rush’ in my body language or voice and that raised her anxiety. Deprived of aspects of cognitive thought, Mum used whatever information she could to make sense of what was happening. Increasingly this was non verbal and emotional and she became a master non-verbal linguist. I didn’t know the term at the time but I was definitely ‘outpacing’ Mum, leaving her behind instead of working together as a team. Gradually we learnt a new way of doing things together, collaboratively, at just the right pace.
Working with communities involves a very similar process of finding a shared beat and learning to work together. It’s how we’ve been developing our Dementia Friendly Communities.
Dementia Friedly East Lothian started with a conversation between a small group of people about what life is like in our community if you have dementia or care for someone who does. Gradually people joined in and conversations spread across the county, involving more and more people. Every week brings new people and new conversations which have been growing and spreading through our communities in an organic and evolving way, popping up in unexpected places, leading to delightful and unpredictable results. If we’d set out a plan we wouldn’t have come up with half the things that have happened; something special happens when humans create things together.
DFEL’s role is to support conversations and provide opportunities for people to learn from each other in a very real, practical and collaborative way. Some conversations make connections and build relationships, others lead to action and things start to happen. Very human, very real. No timescale, no hierarchy. Plans and actions emerge from the process of being in community.
This is very different to how organisations communicate with, or too often, to us, and the nature of the relationship this communication supports. Meetings are arranged, papers written, consultation papers drafted, deadlines set and boxes ticked. Information moves up and down through formal channels and processes, systematically denuded of subjectivity, passion and the messiness us humans bring in our wake.
Sometimes we get invited to join in and we have to squeeze our hopes, fears and aspirations into tiny boxes, often the with only a tick or a cross. We have to respond in timescales that are alien to the pattern of daily life and which make it almost impossible to talk with each other about what we might collectively think as a community.
But things are changing. In East Lothian we have Community-Chaired Area Partnerships which sit under the Community Planning process. Potentially they provide a vehicle for engaging wider communities in getting their voices heard, working with the many community organisations such as Community Councils, Parent Teacher Associations and local networks. Already local older people have had the chance to get their views across about local priorities and they have made a difference.
There is something about dementia that shines a spotlight on what it means to be human and is challenging all of us to do things differently. It demands us to pay attention to authentic communication and the inter-dependencies between us. We have to change how we relate to each other as individuals in families, in communities and in our working environments. This new relationship is about understanding that if we want to get where we want to go, we have to go together. With an authentic relationship, with a shared focus, walking and working together,
That’s co production; that’s collaboration; that’s being human.