Experiences of Intensive Interaction and Dementia

It was quite natural for me to try intensive interaction and responsive communication as a way to connect with people with dementia. I think the first time I tried was in 2011 – at the time I was working at an autism care setting with the people that were the most difficult to reach and I had just started a new care home project for people with dementia. Only a couple of weeks into the project I encountered some older people who were unable to participate in small group interactions due to their dementia and communication difficulties. Observing such people before entering into a one-to-one interaction, I couldn’t help but be reminded of responsive communications with people with autism and severe learning disabilities. I was faced with people who were exhibiting non-verbal behaviours: tapping, singing, murmering, walking… all of which were treated as obstacles to communication by those looking through the lens of the verbal communication that we are all so used to. But from the perspective of intensive interaction and responsive communication, reminded as I was by my experience in autism services and special schools, these behaviours were offerings, ways-in and opportunities for the precious shared experiences that can lead to relationship.
And so I remember my first few encounters. We met people in the living room of the residential care home and one lady was sat back in her chair, her body rigid. Her gaze was fixed, her face tense in a fixed anguished expression. She was frequently vocalising – a low pitch monotone ‘ahhhhhhhh’. I sat with her and joined in with her behaviour, vocalising with her, starting when she started and stopping when she stopped. The whole time I attempted to ‘just be’ without expecting anything or making any demands. In hindsight (and having now worked in various acute mental health units for people with dementia) this lady was living with perhaps the most advanced dementia I have seen but as I sat with her I felt that she relaxed, her facial expression changed and her gaze moved toward my face. I felt a connection with the lady which, according to care staff was unusual.
I found this first experience enlightening and I felt that further investigation was worthwhile. So one week I turned to a gentleman who had so far hummed along to a few tunes when I had been engaging the group in some singing and music making. He was in his late fifties and, once I was with him one-to-one, I found that he could engage in verbal turn-taking but only half his words were clear and his sentences did not make sense to me. He would say something with all the non-verbal body language of somebody who had said something very meaningful but I was unable to understand. Trying to talk to him in a traditional sense would therefore be tricky, staff would ask what he means or would turn-take saying ‘ok’ or ‘right’ when he stopped talking. His dementia was not as advanced as the first lady but I thought it would be appropriate to try joining in with his verbalisations and body language. The results were interesting. He would vocalise a jumbled up group of syllables and smile and I would repeat the syllable and smile back. His response was to smile back and affirm what I had done. We had some rapport. We continued our enjoyable verbal turn taking and I imagined that, if foreign person who did not understand english had entered the room, they would have thought, from verbal exchanges and positive non-verbals, that myself and the gentleman engaged in an enthusiastic and meaningful discussion.
For me, these two examples highlight some interesting points for consideration when using intensive interaction with people with dementia. If we define intensive interaction as a responsive, taskless and mindful approach to communication whereby the practitioner joins in with and celebrates the behaviours of their partner with the aim of sharing a positive experience of social inclusion, then using such an approach with a person with advanced dementia like the lady in the first example (a person who seems to have lost the ability to self reflect) can result in the sort of positive meaningful interaction that is familiar to anyone with experience of using intensive interaction with people with learning disabilities or autism.  Due to her dementia it seems that the lady had lost her ability at the fundamentals of communication and is in a similar position to a person with a severe learning disability who may be yet to learn such fundamental social skills. Therefore our approach may look the same. What we do with a person with less severe dementia may be have to look different however.
After the interaction with the gentleman in the second example I did question whether, due to his milder dementia, he was reflecting on what I was doing and whether he was sometimes asking meaningful questions, however indecipherable, and hoping for meaningful answers from me beyond my joining in with his sounds. For much of the time we interacted I felt my intervention was appropriate but it was quite possible at times that he was wanting a meaningful verbal response in which case my intervention could have been counter therapeutic with the gentleman getting frustrated that I was not understanding them. A sensitive interaction in this case might might not therefore look like a ‘classic’ intensive interaction with one person copying the behaviours of the other.
What should we do then in this situation? Well, we just need to go back to the principles rather than the applications. I defined intensive interaction above as a responsive, taskless and mindful approach to communication. We can still do this without directly copying a persons behaviour… in this situation I often involve music and dance as structures for responsive, creative communication but, since describing this will require another post then I suggest just thinking about the principles… put down your agenda, remain totally mindful, be ready to respond at any time and celebrate the person you are with. See what happens… it can only be positive.