A while ago, I wrote a speculative blog-post wherein I imagined the visit of an elderly couple to an art gallery to take part in some creative activity. I wrote it in order to expound some ideas I had about how to think about creative/cultural interventions and their impact on participants. The core point being that it is better not to consider an intervention as a whole but as a long chain of moments, each moment having its own tiny consequence for participants and possible pathways to positive outcomes.
I’ve just recently finished reading Tom Kitwood’s (1997) book, ‘Dementia Reconsidered: The Person Comes First’. In the book he is arguing for a reconsideration of the nature of dementia (more on that later) and for a reconsideration of what constitutes really good dementia care (p. 89ff). He lays out what forms of interaction make up ‘positive person work’ – essentially it’s a taxonomy of moments that have positive outcomes for the person with dementia. These are:
Recognition; Negotiation; Collaboration; Play; Timalation (sensory stimulation that respects personal or moral boundaries); Celebration; Relaxation; Validation; Holding and Facilitation.
Alongside these forms of care, he also lists two further types of interaction where the person with dementia is taking the lead: Creation and Giving. He follows the descriptions of these with an example interaction between Stewart and a carer, Martin, showing how the interaction can be categorised using these terms.
Once again, I am considerably behind the curve on this but it is encouraging to find that I was thinking along reasonable lines. What is also interesting about this approach is that it focuses on the nature of the interaction… I’ve been looking at another observational tool, the Greater Cincinnati Chapter Wellbeing Observational Tool (which is based on a different model of wellbeing). It occurred to me earlier today that this tool focuses on the behaviour of the person with dementia and makes inferences about wellbeing outcomes on that basis. So, the two approaches seem to be looking in slightly different directions – Kitwood’s approach here is looking at what is happening and how can we describe/analyse them, the other asks what are the outcomes. Which one am I more interested in? Politically, outcomes are more important; academically, the process probably takes prominence.
One of the key points that Kitwood was driving at with his book is that the traditional, medical model of dementia (i.e. that it is just the expression of a neuropathology) is deeply flawed and does not adequately account for the lives of people with dementia. Instead, he argues that dementia should be considered as the interaction between a person’s neuropathology and a broader social psychology (which can be positive or malignant) and it is the interaction between these two that shapes the progression of someone’s life with dementia. He illustrates how the malignant social psychology feeds into a spiral of decline and how it might be otherwise. Not that the social psychology will cure dementia but that it can sustain personhood in the face of the cognitive slights caused by the dementia. I really hadn’t grasped this adequately and was (I suspect) drawn to the fascinating facts of neuroscience. The book challenges that but also points to how positive person work can be incorporated into museum/gallery work so that they become useful partners in sustaining personhood.
Kitwood, T. (1997) Dementia Reconsidered: The person comes first. Buckingham: Open University Press.