I’ve been thinking a lot about involvement, having observed a lot of tokenism recently and having had time to reflect on a range of questions in a brilliant community of enquiry course with the Wales School for Social Care Research. One question we looked at was how much ownership of practice and policy do people with dementia have with regard to services they receive? Then, as someone who could only ever do languages at school, my Latin of 35 years ago kicked in, and got me thinking about this simple question:
What is a service?
It comes from the Latin ‘SERVUS’ – which means ‘slave’ or ‘servant’.
Who in dementia care are the masters and who are the servants? It should be obvious. If you are providing a service then you are the servants. To what extent are service providers really responding to their masters? Only last week I noticed a county council putting out a tender for ‘a sitting service’. (Hopefully the implied infantilization in the very title does not just sit uncomfortably with me?) I can’t imagine the masters of this service being people with dementia.
Again, I ask, how much have we really listened to our masters? Our customer satisfaction surveys may tell us we’re fantastic but how valid is a snapshot tick box PR exercise, when thinking about what really is on the agenda of people with a dementia? We still encounter so much ‘doing to’? Day care, Respite, ‘Sitting’ services, and Dementia Cafes tend to form the usual suspects of service ‘offerings’ these days. They are widespread and, if not well-led, increasingly ill-fitting and tired.
People with dementia are only recently getting the opportunity to say ‘Oi! – we are masters too’. There are now over 90 independent peer groups that form DEEP, the UK network of dementia voices. My colleague brilliantly reflected upon the nature of DEEP today rightly pointing out that people with dementia are still largely reliant on OTHERS to bestow a certain status upon them – and then only fleetingly, conveniently and selectively chosen to feed into the agenda of those others. This relationship needs to be flipped on its head otherwise it denies the needs (and rights) of people with dementia (the masters) to be heard on their terms. Time for a bit of humility.
I was at a recent gathering looking at the accessibility of all kinds of transport across Yorkshire. Representatives from rail, taxi, and bus companies mixed with people living with dementia and other interested stakeholders. Transport representatives said they felt euphoric and amazed at what they’d learnt from the contribution of people with dementia. BUT WHY SHOULD PEOPLE FEEL BLOWN AWAY IF SOMEONE WITH DEMENTIA MAKES A TELLING CONTRIBUTION? It’s an indicator of just how far we still have to go for the views and opinions and capacity to contribute of people with dementia to be recognised amongst the mainstream.
Having said that, tokenism on inclusion is rife even amongst those working within the field. I witness this regularly – and I may be guilty of it myself. Many carry that inner filter which says -‘I will include you in this process but really I’m not sure that you can contribute that much’. Examples can range from small interview panels ‘including’ a person with dementia when successful applicants have already been decided (true!) to national strategy documents pre-written and drafted paying lip service to real inclusion of the voice and opinions of people with dementia (you know who you are!). It’s a filter which says ‘I’m the master here’. I’m sure many of you reading this will be able to cite many such occasions. Time for a bit of humility.
The voice of our masters should not be so hard to find.
So how can we respond to people with dementia feeling as if on a cliff edge after receiving a diagnosis of dementia and a ‘follow up’ appointment in 6 months’ time?
How can we support couples stuck in draining toxic relationships as they fall into the many traps that dementia sets between them?
What can we do more of when Elaine tells us she’s got the untidiest house in York because she’s never had such a busy and activist social life since finding her local peer group?
Should it not be our masters who decide what constitutes ‘Dementia Friendly’ rather than a sticker in the window or a badge on a lapel?
Indeed, should it not be more people with dementia delivering Dementia Friends sessions – or are we too preoccupied with getting bigger numbers and not much more?
What should we do when our master asks, ‘if she wants a break, why should I be shipped out?’
The answers to these questions are already out there in innovative approaches, born from consultation and interaction with our masters. Opportunities to listen, involve and respond abound virtually (eg via the raw and real Dementia Diaries https://dementiadiaries.org/ , the aforementioned DEEP website http://dementiavoices.org.uk/ , and a range of personal on line testimonies) and also in your own communities, work places and neighbourhoods. Someone asked me a question today, ‘Who has the last word on a person’s safety, control or freedom?’ My response to this difficult question was that perhaps we should ask ‘who has the first word?’ Time for a little humility, time to truly listen to our masters.
Servi boni aescoltant magistris