George writes:
Well. I recently took part in two Teams online meetings. It was a new Equality and Diversity group at a local NHS provider. I won’t give more detail here.
But the meetings were meant to be inclusive, for people with disabilities, BAME and LGBT, and included of course me, with dementia.
Now I still handle meetings reasonably well, and I always stop and ask those who rush or speak too fast to slow down or say it again.
So we start, and the chair goes straight into the agenda. No introductions. No hellos, how are yous. No where are you coming from, or why you joined the group.
So of course I stopped it and asked for every person to introduce themselves. Taking up, oh my God, ten valuable minutes.
Then the agenda items. Two leading players from the Trust rattled through whatever they wanted to say, but did so using 500 words when 200 would have sufficed. And far too fast. Many Hancock and Johnson type false hopes and achievements. I could say misstatements?
I had to stop them and ask about acronyms. (Oops.)
We had about 12 people on the call, and several did not contribute, for whatever reason…but the chair did not encourage them into the conversation. It was purely transactional, on her agenda and terms. Get the business done, get our stamp of approval, and that’s it.
I actually said in the first meeting that the group should be contributing what each of us, coming from different ‘places’, felt was most important to address at the Trust. Rather than being told what they wanted. Otherwise what was the point? I also told the chair that she was conducting it like a face to face business meeting in a rush, with staff who knew exactly the context of the business.
After two meetings following this same pattern, including my interruptions, I was so pissed off I resigned. And I sent a full explanation of what they were doing wrong.
To her credit, one staff member, not the chair or the other rattler, wrote back a full apologetic letter and invited me to stay. But I will not.
….
Then today people on a DEEP Group Facilitators Zoom call talked about group dynamics. We’ve often spoken about those few group members who tend to dominate, who are not self aware, and who probably never have been. They drown the others, especially those who find communication hard. This can happen in virtual meetings too, where body language and frowns, etc, are less obvious.
People are people, and we have to accept them for who they are. But as facilitators our job is to ensure that everyone gets a chance – and encouragement – to speak up. We should not do all the talking, or indeed control activity or subjects; that is for members, all members, to decide.
So how should we behave in meetings, and how should we run meetings?
No one has a monopoly on wisdom or experience, but these are my ideas.
Deep groups, whether face to face or virtual, are based on the principle that they are run by people with dementia for people with dementia. Members are self chosen, and if they return they clearly find the group to their liking. The only criterion is that you have a diagnosis. Although, of course, some groups include those providing care and support.
You know my feelings about that, as carers very easily take over and become the voice of the person/s living with dementia. We never know whether it is with consent, but I suspect it is usually just habit.
But just as carers can dominate either their own partner or indeed the whole group, so also can people living with dementia. We all believe in inclusion and accessibility, fairness and honesty. So we need to be honest if a person starts to dominate. Not just move a few big egos away into a separate space, but actually discuss what they are doing. It might be their disease, or it may be their habit. Either way it is not acceptable. We must teach patience and tolerance where these do not exist!
I used to teach, and the ethos of bringing people out of their lack of confidence, encouraging them to find their voice and speak it, has stayed with me. This also applies to passing on opportunities for engagement outside the group. I have found that by gently coaching and rehearsing with a person they find they can speak in public about their dementia, and they blossom in confidence and activism. It is the most rewarding experience for me to witness.
I suggest we should not separate into those who can communicate and those who cannot, those with big egos and those who are quiet. We should instead concentrate on helping and encouraging others, and hold our own egos and talkativeness in check. It takes a lot of thought and reflection, but the group will thrive as a result.
We need to remember that people may well have forgotten who the others are, even a week after the previous meeting. And in a business type meeting, we need to speak up and demand introductions all round at the start. I think the DEEP zoom practice of allowing 5-10 minutes of good humoured chatter, and then going round each person for how they feel, and what they’ve been up to, is how all meetings which include people living with dementia should run.
We also need to have frequent pauses, reminders, recaps, opportunities for questions. As well as the yellow cards throughout!
But it is up to us to educate others about these things. I have resigned from the group I wrote about, because I have decided that my negative anger after the meetings makes them not right for me. I have said before, surround yourself with positive energy, people whose company you enjoy, doing things you want to do. No more ‘shoulds’ and ‘oughts’!
Those meetings also reminded me of the eight or more years I spent there on the patient involvement panel! Totally pointless! I mean, none of the action points from the first meeting had been done by the second! By the paid staff! WTF?
There are some fabulous facilitators, who really do just facilitate. They don’t dominate, they don’t get off on controlling the group. There are other groups where we know they are dominated, whether by the facilitator or a member. We must challenge these people, in a positive way.
We need to behave in the way we want others to behave. “Be the change you seek”, as I think Ghandi said.
This is a social movement thing. It’s also perhaps a socialist thing. We look for equality. Fairness. Our values must be those of respect, inclusion, tolerance, and honesty. If we can embrace these we will have happy groups and happier lives.
It is far more difficult to keep quiet than to spout. It’s hard work, and it’s a skill you have to learn. We will get our turn, and so must all the others.
Remember, we can all be teachers.
