The 3 Nations Dementia Working Group (3NDWG) have recently been working together with Alzheimer’s Society and Dementia Alliance International (DAI) on a project exploring dementia self-advocacy.
Many members of the 3NDWG are excellent self-advocates, and speak frequently and openly about their lives with dementia. However, for many of them, this is not something which has always been the case. They had to work up to speaking publicly with confidence, and teach themselves how to get involved in projects which would allow them to speak out about their lives.
Global self-advocates who feature in the film and supported the project
What is self-advocacy?
Self-advocacy is about having a voice – being able to represent yourself and express your views and needs. Self-advocacy supports the human rights of people affected by dementia and also gives our movement a more powerful and united voice.
This project was born out of the recognition that many people living with dementia do not feel confident in self-advocating, and experiences can vary globally. The aim of the project was to support others with dementia to not only be inspired, but to develop some of the skills to become self-advocates themselves.
The project partners consulted with dementia working groups and individuals who are already active dementia advocates in different countries. This was done to identify the barriers to self-advocacy, which can include: confidence, accessibility, discriminatory language, stigma and lack of engagement from others. The project also identified existing resources to support dementia self-advocates and highlighted some of the gaps that exist.
Resources
As a result of the project, two resources were created:
- Supporting Dementia Self-Advocates – a Directory of Resources collates relevant online resources to support inclusive working and self-advocacy.
- The Many Voices of Dementia Advocacy, a short film with seven people living with dementia in different countries, talking about their experiences of self-advocating, their motivation and top tips.
Hilary’s story
3NDWG member Hilary formed part of the project team. She says of the project;
Back in 2012, I somewhat reluctantly ‘fell’ into self-advocacy and my participation grew from there. My initial worries and fears would have been reduced had I had access to the resources this project delivered. Six years on, I still find this information helpful.
I’m very pleased to have been involved in the development of these resources and very happy to see the advocacy knowledge and activity happening around the world being pulled together.
I hope others find them as useful as I have. I hope they enable people thinking of self-advocating to go to places they never thought possible because everyone who speaks out makes a difference.
Some advice from self-advocates
Here are some of the top tips from the dementia advocates featured in the video:
“The first few times that you speak out publicly you’re terrified of not remembering what you want to say but then you find out every speaker is the same and that even people without dementia are like that.” Kate, Australia.
“Don’t be afraid of your symptoms it does really legitimize what you’re trying to present if people do see that you do have some of the symptoms with the dementia” Dennis, Australia
“Humour makes up for all the fumbles we make along the way and just, you know, I talk from my heart – so that’s probably the biggest piece is you have to talk from your heart .” Christine, Canada
“Be true to your experience, who you are and your voice. The rest will follow from there.” Kris, USA
“To someone who is thinking should I advocate or shouldn’t I – try it and see!” Agnes, Scotland.
“It’s been incredible absolutely incredible the places I’ve been, the people I’ve met the times I’ve had and it’s all thanks to a dementia diagnosis. I’m hoping that other people start feeling the feelings I get from doing this work.” Hilary, England
How to get involved
One way to become an advocate and have your voice heard is to contact dementia support and campaigning groups. They will be able to notify you of potential speaking or other opportunities, and can offer you support and advice if you do choose to participate. If you are based in England, Wales and Northern Ireland, please do join us at the 3 Nations Dementia Working Group.
If you are based elsewhere, you can visit the Dementia Alliance International website to find out about other working groups in your region, or you can contact your national Alzheimer association.
You can also get involved in many ways to influence Alzheimer’s Society’s work.