Involving People with Dementia in National Policy Development: A case study of the Irish National Dementia Strategy Emer Begley, PhD 24 th Alzheimer Europe.

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Presentation transcript:

Involving People with Dementia in National Policy Development: A case study of the Irish National Dementia Strategy Emer Begley, PhD 24 th Alzheimer Europe Conference Autonomy and Dignity in Dementia Glasgow, Scotland, UK (20-22 October 2014)

A whistle stop tour of dementia in Ireland

National Dementia Policy

The Time for Action is Now

We will develop a national Alzheimer’s and other dementias strategy by 2013 to increase awareness, ensure early diagnosis and intervention, and development of enhanced community based services. This strategy will be implemented over five years. Programme for Government

Developing the Strategy Excellence in Dementia Care Research Review (O’Shea, Cahill & Pierce, 2010) Public call for submissions (i) What is your particular interest in/experience of dementia (ii) Of the areas outlined, what should the main priorities for the Strategy be e.g. awareness, early diagnosis and Intervention, community-based services, long-stay residential care, acute care, research (iii) What specific issues would you like addressed in any or all of the priorities that you have selected? (iv) Is there anything else that should be considered for inclusion in the Strategy? Government’s Dementia Strategy Working Group

Limitations of the approach From an organisational perspective “meaningful inclusion and active participation of people with dementia is essential, as it is only by gathering information from people directly affected by the condition that the full potential of a national approach to dementia service planning can be realised” (ASI, Submission on National Dementia Strategy)

Changing levels of engagement – the drivers

The Irish Dementia Working Group

Greater visibility of people with dementia

Atlantic Philanthropies A private foundation founded in 1982 by Chuck Feeney. Provision of grants in Ireland relating to ageing, children and youth and reconciliation and human rights

Becoming an agent of change? The voices are louder, they are starting to be heard but how do we ensure they will be acted upon? -Strong leadership in promoting the involvement of people with dementia -We’re learning -Participation of people with dementia in government working groups -Meeting with decision-makers -Speaking at meaningful platforms

Irish Dementia Working Group Hopes for the NDS