July 16, 2019

The global voices of dementia self-advocacy

Dementia Alliance International (DAI), the Alzheimer’s Society UK, and the 3 Nations Dementia Working Group (3NDWG) have worked in partnership to develop two resources to educate, inspire and empower more dementia self-advocates.

This project was initiated, to support others with dementia to not only be inspired, but to develop some of the skills to become self-advocates.

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.

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.

As part of the project two resources were created:

• Supporting Dementia Self-Advocates - a Directory of Resources, which 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.

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.

5 Top Tips from self-advocates

“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 Frost, 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 Thelker, Canada

“Be true to your experience, who you are and your voice. The rest will follow from there.” Kris McElroy, USA

"To someone who is thinking should I advocate or shouldn't I – try it and see!" Agnes Houston, Scotland.

"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 Swaffer, Australia.

For more information or support, or to get involved with local or global advocacy, contact the project partners for more information:

• Dementia Alliance International
• Join Dementia Alliance International
• Influence the Alzheimer’s Society UK's work, or if you live in England, Wales and Northern Ireland you can join the 3 Nations Dementia Working Group.
• Or contact your national Alzheimer association

The inspiration for this project evolved from conversations between Kate Swaffer from Dementia Alliace International (DAI) and Amy Little from The Global Alzheimer’s & Dementia Action Alliance (GADAA), after conversations on how to better support capacity and abilities inDAI members, all who are people diagnosed with dementia, who have not only lost, but are continuing to lose some abilities.

With the appropriate support, it is very evident people with demenia can still, and do, live very meaningful lives, for much longer than told to expect, if diagnosed in the earlier stages of dementia.

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