Visiting Hesse Rural Health at Winchelsea

photoThis 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?

  • Boredom
  • 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.

Thank you Peter, Brodie, Janelle, Amy and Andrea from Hesse Rural Health for looking after me, and Di for the wonderful B&B just out of town.

 

10 thoughts on “Visiting Hesse Rural Health at Winchelsea

  1. Dear Kate,
    It was a privilege and a pleasure to meet you and spend time with you during your visit to Hesse Rural Health. We were all very inspired by the work you do and truly see you as someone with great Abilities despite the dis!
    I hope your dinner tonight is a great success and look forward to Tuesday’s blog.
    Kind regards
    Janelle

  2. Kate – I loved the points you made about the problems that exist with the current dementia units, but can you please write a blog one day with your solution to each of the problems – you can write it over a few days, for example.

    eg. if people are in a room that’s not decorated to their tastes …. well, everyone has different tastes so how can a general living room be to everyone’s liking? And about being bored …… what can people with dementia actually do …… ?? go walking OK – 10 minutes. Listen to music from their youth OK, etc but there are about 18 hours in a day to be filled ……. OK, take out personal care and eating, and you have 15 hours. Know what I mean?

    I’d love to know your opinions. I don’t like what’s happening now, but I don’t know what can be done to improve it.

    Thanks 🙂

  3. Hi Kate, congratulations on being the first employee with Alz Aust to have dementia.
    You have so much to offer as a consultant on Dementia friendly initiatives and it
    must feel great to be doing such an incredibly worthwhile job and being back at work again.
    Wishing you a wonderful trip down the Great Ocean Road and keep up the great work!

  4. Hi Kate, just read your blog. You have been invited to stay at the Lorne Hospital and travel along the Great Ocean Road. Please consider this…my John is the vice chair of the Lorne Hospital and he is keen to reaffirm the invitation which you received from Damien, the Lorne chair while you were in Winchelsea. They would put you and Pete up in their new doctors accommodation. So let me know when you and Pete want to do the trip along the GOR and I will let John know. Tess xx PS Boris and I will have a lovely time.

    Sent from my iPad

    >

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