This week I visited Winchelsea and presented to the staff at the Hesse Rural Health service, and also at their AGM on my personal experience of living well with younger onset dementia, and about the advocacy work I am doing globally and in Australia. I talked about how I believe I am living well with dementia by treating the symptoms of dementia as disAbilities, and finding strategies to support them, has taught me it is possible to live well.
As most readers here know, upon diagnosis, I was offered Prescribed Disengagement, which I discussed, along with the two models of care, one supporting this prescribed disengagement, the other supporting positive and meaningful engagement using a disAblity model of care. I talked about my daily regime of non pharmacological and positive psychosocial interventions has not only slowed down the progression of the disease (I am the anecdotal evidence!), there is now evidence based research to support this approach to living with dementia.
It was fabulous to visit them, and also to look at their dementia specific unit for ten residents. This was designed by an architect using the Dementia Enabling Environments standards, has a number of doors leading to a beautiful garden, a ‘mens shed’ with an old car and tractor, a few chooks and some sheep in a paddock just beyond the garden.
Importantly, residents can go outside as they wish, as there is an external fence beyond the garden and shed for security. My only negative criticism was that the television was blaring in the large common room, and even for me, it was difficult to keep up with conversations, so for the residents with more advanced dementia, it would be much worse.
The management asked me to talk about why I believe it is not a good idea to have televisions blaring in dementia units, or even in aged care common rooms in general, and when I presented at the AGM, I put together a few points as per this slide on my power point :
What will it be like living in a dementia specific unit?
- Not allowed to go for walks – this will be termed ‘wandering’
- Noisy TV, that most of us can no longer understand, sitting in a common room, feeling isolated and bored
- Bingo or other meaningless activities
- Food that is tasteless and visually unappealing
- Decor that is not my style
- I will feel like I am locked in jail (even though I am not a criminal)
- It won’t be age appropriate
Although it is very tiring, I will continue to present to groups and at conferences, while I still have a voice, and to work as a volunteer on numerous national and state committees and projects to improve aged and dementia care in Australia and to help break down the barriers and stigma of dementia. I am also very lucky to be the first person with dementia ever to be employed by Alzheimer’s Australia, working with them as a consultant on their Dementia friendly initiatives around Australia, and am enjoying being back at work with meaningful, purposeful engagement, complementing my advocacy work.