Dementia friendly communities… the missing pieces

Meeting-Clip-ArtAustralia along with many other countries including the UK is focused on becoming dementia friendly. The Associations and Organisations advocating for people with dementia and their family carers are sitting around tables, inviting guest speakers to present at events and teach others how to make their organisations and communities dementia friendly.

The UK have been working on being dementia friendly via projects such as the Dementia Engagement and Empowerment Project (DEEP) for over 10 years, and yet the UK only have 350 people with dementia actively involved in their own advocacy. After all this time, and the size of their ‘community’ that seems an appallingly low number.

In the work being done towards dementia friendly communities, there are two pieces of the puzzle obviously missing; It is the internal Audit that needs to be done, inside their own organisations, and the full inclusion of people with dementia. I do not know of any truly dementia friendly Alzheimer’s/Dementia organisations. They generally are not inclusive of people with dementia, rarely have them on their Boards, and the consumer committees that have been set up to provide a consumer voice, are predominantly made up of carers, not people with dementia.

Thankfully this is changing, as the Scottish, European and Australian Dementia Working Groups made up entirely of people with dementia have set the trend, and I believe the Irish Dementia Group is currently being set up, modelled on what Scotland did twelve years ago. The Scottish group was ground breaking, and set the example of what could, and should be done. But not having people with dementia, at the table, at every single meeting about them, about what their needs are, being part of the conversations, is not dementia friendly.

There is no way any country or community would be holding meetings or running events, on what a gay or disabled friendly community is, without gay or disabled  people being present.

Of course people with dementia rely on the support and services these organisations can provide, but not to their own detriment. Often we are used in a patronising and tokenistic way, in order for them to say they have included us. We are used to help with fund-raising, reported as ‘sufferers’ and ‘victims’ in order to elicit sympathy and support through fundraising for research. Research still mostly goes into finding a cure, even though the top researchers openly and publicly admit we [they] are further away from a cure than they were 10 years ago!

Change is in the air, and as the voices of people with dementia get louder, and more unified, through organisations such as Dementia Alliance International we will spread our wings and use our voices to ensure our basic human rights.

 

11 thoughts on “Dementia friendly communities… the missing pieces

  1. Pingback: Dementia Friendly West Kent… a small step to a dementia friendly world! | Whose Shoes?

  2. Hi Kate,
    You are so right. How can one understand when one has not experienced. Yes one can try to learn and provide advice but as is so true. As they say “You have not walked in my footsteps or lived in my world”.

  3. Hi Kate, I have been following your blog for a few months now, I briefIy met you at the Whose Shoes presentation at Alzhimers Vic. I applaud your cause, I have worked in the industry for the last 30 years and have worked closely with many people who have had dementia, It has always frustrated me greatly that their voices are not heard, a person with cancer is listened to, why not a person with dementia. Aged care facilities in Australia are still driven by untrained staff, funding issues and are often not condusive to person centred care. We have a long way to go and I hope that people like yourself can assist with changing the culture. I look forward to hearing you speak in Sydney at the Risky Business 2 conference. Keep up the good work.

    • Thanks for your support Julie. It is wonderful to hear the voices of those who really want change, and are willing to stand up for it, well done. See you in Sydney!

  4. The real lesson here for everyone is that if people living with dementia are not empowered their lack of voice will be filled by the voices as uneducated as me your loving husband.
    As much as I love you, I can try to understand but will I every really, I doubt it.
    I believe that the time has come to let people living with dementia not only ride along side but to drive.
    If they do not I am afraid that nothing will change.

  5. This is a very important blog, Kate and throws out the gauntlet to many ‘dementia organisations’. I am depressed by some of the stories you tell me – people holding ‘dementia friendly communities’ events but not allowing (far less encouraging) people with dementia to get involved. (?!**)

    I am hugely honoured that you and an increasing number of people living with dementia across the world like and support my work. Whose Shoes? is totally inclusive. I regularly tell people that I feel increasingly uncomfortable when I am asked to work only with ‘professionals’ without also involving ‘the people’ – this applies across my work and adds huge richness and learning. ‘Lightbulb moments’ from simple discussions help people drop the barriers, realise that we are all human beings, and work effectively together.

    As you know, we are just starting some workshops in Kent in the UK to help local people build ‘dementia friendly communities.’ A jargon name for communities where, in my view, everyone thrives and people who are struggling in any way (whether through dementia or any other reason) are supported in a natural and kind way. The way the best communities work and have always worked.

    I have issued an open invitation for people living with dementia to come and join us. They do not need to ‘stand at the front and tell their stories’ (they can if they want!), just to sit round the table and chat to people, using bespoke Whose Shoes? material to trigger open conversations in a relaxed environment. I have some wonderful people to work with – notably yourself (in Australia!) and Ken Howard in the UK.

    Where are the people in Kent? How do we spread the word?

    • Yes, these two pieces of the puzzle are missing almost everywhere, except perhaps in very small pockets or areas. We need every person with dementia, to stand up and speak out, to quote my friend Richard Taylor! I threw out a challenge to the Dementia Advisory Committee here in Australia last week to introduce three new people with dementia to our consumer group Secretariat and overall brilliant support person. It seems it is up to us to grow our numbers, as most associations or societies are not doing it, and the private organisations trying to it are not yet being effective. I am moving towards funding a public forum for people with dementia in my state, but will hold off a little longer… individuals should not have to do this!! It is my future, and it is very personal, perhaps the one thing that keeps me going, against the odds.

  6. Hi Kate, I have been writing a comment about this on my blog, for the UK, as many people with dementia feel as if they don’t know what they are talking about. I feel totally annoyed that we have to be trained to be Dementia Champions when we know more about the illness than many of these trainers.
    Wonderful blog

    • Hi Ken… sorry to hear this, but I thought as much. Together, we must speak out more, and make those making decisions about us without us, do more than listen. We are the experts, as you rightly say! and thanks for your support here my friend.

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