People with dementia influencing policy and practice

MTC Dementia coverTen years ago people with dementia were invisible and silenced, stereotypically perceived as incapable, and excluded from research, policy and practice.

Professor Heather Wilkinson of the University of Edinburgh led research to challenge widely-held beliefs about how far people with dementia can meaningfully participate. She showed that people with dementia have an important contribution to make to research, policy and practice, and that methodological and ethical challenges in the involvement of dementia patients in those areas can be addressed and overcome. As a result the Scottish Dementia Working Group (SDWG), which includes people with dementia, was formed in 2002 under the umbrella of Alzheimer Scotland. Professor Wilkinson initially worked closely with James McKillop, a person with dementia, who later chaired the SDWG for six years, became a member of the Alzheimer Europe Working Group and was awarded an MBE for services to dementia.

In 2009 the SDWG partnered with the Scottish Parliament’s cross-party group on Alzheimer’s at the launch of the Charter of Rights for people with dementia, which led to the first Scottish Dementia Strategy in 2010[pdf]. Nicola Sturgeon, then Deputy First Minister, said: “It has been vital to me that, in implementing the strategy, [Alzheimer Scotland and the Scottish Dementia Working Group] have both been at the heart of the large programme of work, providing expert advice and input on the services to which people are entitled, and influencing the implementation of the various strands of the strategy”.

The SDWG has been involved in outreach to professional groups and members have contributed to training DVDs which were produced in collaboration with Health Scotland, Alzheimer Scotland and NHS Education for Scotland. Group members were also on the National Integrated Care Pathways steering group, mapping out service needs, and they continue to work closely with the Care Commission.

In these ways people with dementia are now able to directly influence and inform practice directives, guidance and frameworks at a national level.

Jean Georges, Executive Director of Alzheimer Europe, describes the SDWG as a “particularly successful example” of a campaigning group run for and by people with dementia and, in 2012 the European Dementia Working Group was launched, based on the SDWG model. In 2014 Japan launched its own Dementia Working Group after spending time with the Scottish group and making a documentary film about their work.

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