IJ leads research on the care of people with dementia. I arranged a meeting with him to discuss the work I’m doing for TWAM.
The conversation with IJ roamed around the topic of care for people with dementia. Apparently he and his colleagues are currently working on simulation of presence therapy – simulating the presence of people who are absent (for one reason or another) as a means of reducing distress.
He suggested I look at the work of Polly Kaiser (sp?) who is working in the North West of England.
Bearing in mind my endeavour to develop an evidence-based practice for different forms of dementia, he pointed out that clinically never quite sure what a person is suffering from and it is often a mix of conditions.
IJ uses the idea of schemas / scripts to think about people’s behaviour. A schema is a mix of memories or learnt behaviours. We use scripts every day in order to get through different social situations but people suffering from dementia slip in and out of them (“timeslips”) even though they might not be the ‘right’ script for that moment. For example, they might wake up and slip into a ‘getting ready to go out to work’ schema even though they retired years ago. Once in the script, people with dementia live within it and staff have to find a way to get them out with distressing them by attempting to confront them with reality. (I heard of one care organisation using a fake bus-stop outside their care home as a means of ‘holding’ patients until they could slip back out of the schema.)
IJ didn’t feel that we necessarily understood what makes good triggers. He also felt that dementia makes people much poorer at repressing traumatic memory and this needs to be borne in mind.
I raised the idea that reminiscence could cause trauma by encouraging people to return to a past version of themselves but then, after the session, leaving them confronted with their present selves and the published suggestion that reminiscence should move progressively through the person’s life-path towards the present time. IJ felt that this was quite an academic idea and he didn’t think it would work in practice; nor did he feel that it was necessary to do so as people can retain quite contradictory ideas about themselves (For example, when questioned, a man might recall that he is seventy and that his son is only 10 years old.)
We moved on to the idea of spatial memories and environmental interventions. He referred to one person’s work which indicated that spatial memories are retained better than other types of memory. He directed me towards the work of SPECAL (in Oxford) who set up sensory/situational environments in day-care settings. IJ stressed the quality of interaction between participants and that the key is for the person with dementia to feel valued.
I asked about whether the wider care sector, particularly funders, sees value in this kind of work. he pointed out that it depends on what you perceive to be the outcome. We are our memories, loss of memory (and therefore self) can lead to isolation. Recovering memories can help initiate conversation and facilitate relationship between people with dementia and their care-givers. IJ labelled this “re-personalisation”. Similar to some of IM’s comments about people with DLB people with AD can feel odd because they can perceive emotional responses in the listener and respond to that. Another aspect of the value of therapy lies in its ‘generalisability’, i.e. the longevity of the outcomes beyond the duration of the intervention. This is less clear. However, impact has to be seen against a backdrop of declining conditions. (That is, we are looking at differences in rates of change rather than differences in absolute values.) Despite this IJ felt that it is universally accepted that working with memories is a good thing but objects are not necessarily used in a structured way and that training in how to use objects would be a good thing. Outcomes included making patients feel comfortable and helping staff to talk to them.