Working in Kiama

For six months now, I have been visiting and working in the Kiama area as part of the contracted consultancy role I have until this week with Alzheimer’s Australia, on the dementia friendly community Pilot Project with the local Kiama council, Alzheimer’s Australia and the University of Wollongong.

The main challenge has been to involve and engage people with dementia; as with most cities and towns, many of the people with dementia have not even “come out” yet about their diagnosis, due to the feelings of shame, the stigma and discrimination, and the isolation experienced following the diagnosis.

This is partly due to the Prescribed Disengagement dished out at the time of diagnosis – being told go home, get their end of life affairs in order, and get acquainted with aged care, which is a recipe for hopelessness, helplessness and a pathway only to aged care and death.

No indication there is and can be a good life to live, alongside dementia, for many people. It is encouraging to see a few people with dementia and their support people (partners, husbands, wives, friends) take this project on, and become active members of the first Local Dementia Advisory Committee in Australia, called in this region, the Kiama Dementia Advisory Committee. It is modelled on the national Alzheimer’s Australia Dementia Advisory Committee.

This is what we need every dementia friendly community initiative to do, as without allowing people with dementia, also living with varying and significant disabilities, to function in smaller groups, with support, rather than expecting them to be part of a larger group full of people without disabilities, is unreasonable, and of course, is partly why it is hard to get them to engage.

Kiama is setting the example, and I am thrilled I will be staying on with this project in a voluntary capacity, and I am very hopeful this will become part of the suite of dementia friendly toolkit resources.  Well done to the members of this Dementia Advisory Committee in Kiama, and together, we will lead the way.

It basically involves a few simple steps. The first two are to set up a Local Dementia Advisory Committee and a Local Dementia Alliance or Working Group. Then we need to encourage organisations, businesses and the community to engage, by;

  1. Making the Commitment  (having Board and/or management of your organisation sign the Dementia-friendly commitment – template attached)
  2. Making it real – completing an action plan (with the assistance of Alzheimer’s Australia) to define the strategies and how the organisation will work towards  becoming dementia friendly. This plan will go to the Local Dementia Advisory Group to review and approve.
  3. Making it last – annual continuous review process to look at what has been achieved and identify other priorities and strategies for the next 12 months.

Of course, the resources on the Alzheimer’s Australia website includes a lot more steps, processes and details, and some other terrific examples, but it is really a simple inexpensive process. The most important step, is to include people with dementia every step of the way, in the same way we would if we were setting up Indigenous or disAbled friendly communties.

11 thoughts on “Working in Kiama

  1. Joze and Eloisa we have to work from the inside out to make real change. “Start locally, share globally” is how I see my involvement in the Kiama project.
    We can also link with disAbilities and human rights organizations to build inclusive communities.

    Many people living with dementia, all over the world, feel threatened, ignored, socially isolated, ashamed. Some, like our dear Kate and my partner Veda, want to be heard and not silenced. People living alongside dementia, like me, feel angry, occasionally disheartened….but determined to advocate well against discrimination.

    Please share what you do on social media.

    Facebook: Lynda Henderson


  2. Hi Kate, it sounds like a great project to part of.
    I am in the process of setting up a dementia advisory panel in a small community here in Italy. Perhaps, the first of its kind in this country? It pains me to say that, so far, I’ve failed to find a similar organization here. Unfortunately, Italians with dementia are still completely voiceless and powerless. And invisible.
    This is why I keep translating and publishing posts of PWD from other countries onto my own blog/website. Frankly, I find this whole situation insane – how can you exclude from society so many people and not see the consequences of such discrimination?
    Nevertheless, I am trying to stay positive and do the best that I can in really tiny and sensible steps. For now, I am focusing on building a dementia-friendly community in a small town in the Province of Padua (close to Venice). The rest of the services – such as the ones offered to people with dementia by Alzheimer’s Australia – will be progressively deployed in the months/years (?) to come with the help of local citizens with and without dementia. I am trying to import as many good practices as I can get from countries that are more engaged than Italy in promoting dignity for individuals with live with dementia, though the resources are very limited, and the stigma is very harsh.
    Whatever tips and best practice you can pass along with articles such as this, please share!
    Ciao e grazie Kate



    • Near Venice… I don’t think I’ll be near you on my trip, what a shame! Do have a look at the resources online, which are about to be modified to include the Local Dementia Advisory Committee as a starting point for dementia friendly communities… well done you for forging ahead with virtually no support. Ciao from me too (but that is the limit of my Italian!) xox


  3. What a wonderful initiative this is Kate and absolutely essential! Every community should look to Kiama for its future success. You are making a wonderful social contribution with your involvement.


  4. Well done, it is so good to hear that there is some great work happening out there. I hope it continues, I would love to be involved in some capacity. Don’t know if that is a possibility. Even if it just to help spread the word.


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