The importance of communication and meaningful interaction
Elizabeth Peel in Conversation with Larry Gardiner
In the fourth of a series of six blog posts I talk with Larry Gardiner. Larry describes himself as a Change Agent, Co-producer, Citizen Advocate, Gentle Irritant. I interviewed Larry who shared with me his experiences and views – or rants as he puts it – on numerous topics: the diagnostic process; human potential, being and engaging in the world; the distinctiveness of younger onset dementia; the importance of communication, and meaningful interaction; the “bigger picture” and how people with dementia are represented and treated in society; his views on research; and on anti-psychotic medication.
This particular ‘diablog’ focuses on the theme of the importance of communication and meaningful interaction.
Larry: In the garden of this care home… I met a man called ‘Bob’ and I really love him. He was 82… We were having a chat, he used to be a lorry driver and a long time ago I was a truck driver for a while so we had that in common. We’d be chatting away, a lot of words had fallen off, and his language was, brain stuttering had set in so he couldn’t find words, and instead of anticipating the words I thought he was looking for like you did with me, which I appreciate by the way, I decided not too and I watched him try and articulate with gesture and facial expression things and he had the most animated face. Eyes were absolutely glowing with excitement about someone actually listening to him and paying attention, and um, when we were finishing the conversation I just said, “why do you get up in the mornings Bob”, he said, “oh always get up, always get up, he says, I get a hug” (laughs). And it’s because the people who work there genuinely had affection for him and tenderness, and didn’t see him as a collection of symptoms but as a person, and they were just delighted in the things that he still could do rather than only seeing the things that he couldn’t do anymore.
Larry: he could still enjoy contact, the human contact that’s brain to brain, there was still something he enjoyed, so he liked conversation and even if he couldn’t find the words he could (pause for gestures), you know
Liz: Yeah, animate and gesture, yeah
Liz: And what are the pressing issues?
Larry: If you don’t understand dementia, you can’t really deal with it. And um, what I hit at the moment with this implementation of dementia friends and dementia champions is, I get a lot of this “does he take sugar” and talk about me while I’m present and say, “I wonder if like to go to the pictures maybe sometime or actually go for a walk around the park”. And I’m standing right there and nobody has ever asked me.
So the mantra I have most time for is the one that came out of the disability activism movement which is the, no decisions about me without me. So don’t ask him, or her, or you, ask me. Because I do have something to say about it. And even if I’ve lost the capacity for articulating things through language and even if I’m losing words or lost words altogether, you can still discern, if you make the effort, what it is that I want and don’t want, what my preferences are, what my aspirations are, what my ambitions are.
And there is this stereotypical portrayal of people with dementia. That we have no concern for the future, we’re unconcerned. Oh there’s no point in asking him because he doesn’t care anyway. And there’s no point in asking him if he wants this or that because he’s got no idea what you’re talking about. It’s rubbish you know, it’s not true. The fact that I cannot communicate that I know what you’re saying doesn’t mean that I don’t know what you’re saying. The fact that I don’t react to anything you say or do doesn’t mean that I haven’t noticed that you are saying or doing something.
Liz: What, if any, communication strategies or approaches are important to people with dementia?
Larry: The things that I’ve tried that work is exchanging listening time. So, sometimes what I’ll say is, I’ll just propose something, if you listen to me for 10 minutes I’ll listen to you for 10 minutes. You know, if somebody doesn’t have language, it doesn’t mean that they don’t want to get listened to. So to make it safe, sometimes I’ll take my turn first and I’ll use a timer, I’ve got an egg timer and I’ve got one of those things on my phone. So I’ll say, usually start off with small amounts of time, so I’ll say I’m going to set my timer for 3 minutes. When it goes ding, I’ve got to stop and then it’s your turn. And it says expressly that in 3 minutes time you’ll get 3 minutes to do anything you want to do and you’ve got permission to do it and because you’re listening to me you can give yourself permission to do it. So for 3 minutes I’ll just talk about whatever’s on top, often enough I talk about new things, good things and interesting things that might be of interest to anybody. And I like the sound of my own voice, it’s no hardship for me to talk, you may have noticed that. And then, at the end of it, it goes beep, beep, beep and I say it’s your turn now. And I just sit and I just look at them and I sometimes hold onto their hand, if that’s not going to be too freaky a thing to do. Um, I was with this lady and as soon as the beep, beep, beep, I said it’s your turn now. Her eyes started watering and so I just stroked her cheek, like that, with just the tip of my finger like that. She didn’t say a word for three minutes but she had a bloody good cry. We had a hug at the end of that three minutes and I said, do you want to do it again? And she went like that, her head, it was almost involuntary you know, almost like she couldn’t stop herself.
And the other thing that I’ve noticed that’s really works well sometimes, another little antidote is um, if there’s a sort of pattern of behaviour and it repeats over and over, over and over again so that it gets into a sort of chronic stimulation that’s running all the time, this pattern of behaviour then runs and completely masks the person. You want to climb in with the person, just start doing that behaviour back at them but in a light hearted way and with a smile, not taking the micky, not in a humiliating sense, not in a vindictive sense and not in a vengeful sense but in a “oh so you do that do you?” Some dementias manifest with behaviours. Sort of lots of repetitive movement, there’s a man I was with yesterday who does this, he rubs his hands like that all the time. Another thing that he does is claps his hands all the time. He’s got Picks disease. And another thing he does is that he shouts out, shouts out and I think that people humiliate him and take the micky out of him and I think that he, the people mock him by mimicking him and I think that makes him, I think it’s distressing. The experience of that is distressing.
So I was sitting with him and I took his hand that was doing this (rubbing together) and I put it on my arm and I said I would like to have a go at that, do it to me. But there was a contact and a connection, you know, one body with another body, one human being with another human being and there was a communication going on and I’m saying, well I want to feel what that feels like and you show me, sort of thing. And um, oh I tell him that he has beautiful brown eyes and I tell him that I love his smile. So um, do that at the same time that he’s doing that (rubbing hands) and he’s looking right into my eyes and right into my face. I love it when people look at me like that, you’ve got lovely eyes, you know. And you know, when you smile the sun comes out and there it came, an enormous eruption of a great big smile and then I saw his shoulders go up like that, and then down. It was almost like something came off, something fell off his back, and this (rubbing hands), I don’t know what it was, but he then decided to stop it. That agitation was- just flurried off a little bit and he lolled off after that, had a little sleep.