I often ponder on the various activities and forms of ‘behaviour management’ or recreation offered to people with dementia in the community, and then in residential care homes. Why not go skydiving, dancing or fishing instead of playing Bingo… I’d be happy to spend it on that!
I suspect it is likely the reason activities such as Montessori are needed to engage people with dementia is because they have been so disempowered by the Prescribed Disengagement, others unintentionally disabling them, and then being offered activities such as Bingo (!), they have simply become disengaged.
I would too, if Bingo or art classes were all I was being offered as recreational activities, which in for me, are not engaging or pleasurable at all. (No offence to the artists, it is just not my thing, apart from the fact I am totally useless at art!!)
Montessori is being used in many care homes to “encourage engagement, a sense of community, person centred care” and so on, because once the label of dementia has been placed on our head, these things are taken away and we are treated by many as if we don’t exist, and “are not all there”.
Research in Wollongong has just shown that part of this issue, is that people without dementia, have very low expectations of our ability to function in any way. Perceptions and misperceptions have a lot to do with this, and are the reason why I and many others with dementia continue to speak out.
If treating adults with dementia like children, or with activities or methods developed for children is the only way of providing better care for them, I suppose it’s better than not using them, but there has to be a better way, surely? Things like Doll therapy, whilst may be appropriate for a very small group of people in residential care, seem to infantilise us, and devalue us. Personally I’d prefer people with dementia were engaged in some trans-generational activities and outings with real babies and children, rather than dolls. I know some people reading this blog (Sorry LB xx) have researched this intervention for dementia, and support it and use it well, but I still feel very uncomfortable. The key here of course, is they are my feelings of discomfort. I’m ok with that.
In the same way our communication problems, which can sometimes caused a change in our behaviour, most likely because OTHERS have not taken the time to learn to learn how to communicate with us, are ‘managed’ as ‘challenging behaviours’. It is not always possible to engage us in the ways that work for us when we were not disAbled, nor the way that works for people with our dementia, and yet, the sector that cares for us, and some family/friend supporters do not take the time to learn how to communicate with us, then wonder why we might display “challenging behaviours”.
We need to be engaged in ways that accommodate our various and changing disabilities. We need to be fully included. We need environments that are enabling and dementia-friendly and accessible, in the same way we provide wheel chair ramps in all buildings and public areas. We need the community to be dementia aware, and to respect us, and engage with us, rather than accepting that locking us away, or leaving us isolated is ok. All we really want to do is to continue with our lives in the same way we would if diagnosed with any other terminal illness, supported to live in our communities, engaged in the things we loved doing before the diagnosis.
The Dementia Friendly Pilot Project in Kiama NSW is aiming to do just that, and a group of people with dementia, supported by their support people, along with the local council, the University of Wollongong and Alzheimer’s Australia, is leading the way in Australia with engaging people with dementia in their work.
Well done Kiama… and congratulations to Dennis, Tina, Veda and Lynda for leading the way.