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.

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.

As part of the project two resources were created:

Supporting Dementia Self Advocates: A Directory of Resources

There is also a video

Christine Thelker’s story

The first time I spoke publicly, I was nothing short of terrified, and totally lacking confidence in my ability. Living with dementia means your abilities change, your confidence plummets, and mostly due to how others treat you. So advocating and finding my voice, through DAI, I have blossomed, and I encourage others to get involved and use their voices, and taking part in this project was one way I can try to make a difference for others.

 After being diagnosed, and left with virtually no supports, other than ‘go home, get your affairs in order, or, get ready to die’, well, that wasn’t good enough for me. It took over a year for any support at all was provided. Luckily, I found my own support with Dementia Alliance International, which importantly, is an organisation run completely by and for people living with dementia. Being part of this project makes me hopeful that not only will we encourage more self-advocates, we will all start working together.

Hilary Doxford’s story

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

By working together, the impact of self advocacy makes a much bigger difference.

Global self-advocates who feature in the film and supported the project (Left to Right): Amy Su, Dennis Frost, Kate Swaffer, Kris, Christine Thelker, Agnes Houston, Hilary Doxford, Petri Lampanen and Veda Meneghetti.