Tina Leonard, Alzheimer Society of Ireland, talks about the vital importance of hearing and supporting voice and advocacy in Dementia.
The Alzheimer Society of Ireland’s initiative Voice and Advocacy in Dementia, seeks to promote recognition of dementia as a major national challenge by supporting the mobilisation of public support for government action on dementia.
The Advocacy and Voice Programme has three main focuses:
- Public Awareness Campaign – Educating the public on the lived experience of dementia to tackle stigma and increase understanding of the disease
- Dementia Friendly Communities (DFC) – Addressing the exclusion of people with dementia from community and the need to reconfigure community so that it recognises and understands dementia and works to support people with dementia in their everyday settings.
- Politicising Dementia – Developing tools for advocacy; direct political advocacy; influencing policy; research and capacity building for successful grassroots advocacy.
ASI faciliated the formation of the first Irish Dementia Working Group in 2013, made up of people with dementia, speaking up and advocating for what is needed in policy, practice and care. This Group has been instrumental in raising awareness of dementia at a national and international level. Many members have spoken powerfully on radio and television, and have lobbied government members and officials on the needs of people living with dementia.
In addition ASI has facilitated an advocacy group for carers called the Dementia Carers’ Campaign Network.
On the Ground
The work of ASI has had a powerful influence on the development of the National Dementia Strategy, its publication and its implementation to date. ASI continues to advocate for its progression and is calling for a second National Dementia Strategy.
The work to encourage people with dementia to speak out for themselves has been instrumental in increasing public and political understanding, awareness and profile for the conceptualization of personhood in dementia. It has become recognised that people with dementia are able to speak for themselves.
The ASI continues to push for change through:
- Strengthening the work on Dementia Friendly Communities.
- Enhancing the role and potential of the Dementia Working Group.
- Focusing on people with dementia in all care settings.
Listening to, and hearing, people with dementia speaking out in public for and in media has helped to address the stigma that attaches itself to the disease. It has begun to disassemble stereotyping that people with dementia don’t have a voice, hopes or futures, or that they are not capable of participating in society in an inclusive way.
“They (media outlet) wouldn’t have done the piece without the direct voice of the person with dementia and they were assuming there were people there who would do (it) … It’s just interesting to see because what we, me and my team, really want to do now is move away from a medicalised narrative. We have to work on the sustainability of this and its development, because there is so much they could do and there are so many more people we could involve”.
Tina Leonard, Head of Advocacy , ASI, on the new approach to dementia by Irish media.
