Influencing dementia philosophy, policy and practice

Summary 

The Scottish Dementia Working Group helps people with dementia to promote their own rights and a more positive image of people with dementia.

What was the problem? 

Ten years ago, people with dementia were more likely to feel marginalised. A common problem was thoughtless care provision, which left them out of decisions that directly affected their lives.

Research was needed into what people with dementia felt about their own capabilities and how they could contribute in meaningful ways to new ideas about care for people with dementia. Instead of dictating how they should be cared for, project researchers wished to enable people with dementia to voice their concerns, to allow them to say how they felt and how they should be treated.

The culture of invisibility, silence and stigma had to be challenged.

What did we do? 

Dr Heather Wilkinson’s research team set up five projects to tackle these problems.

The research helped to change people’s beliefs about what those with dementia were capable of and how they could participate in positive ways. People with dementia explored and developed these issues themselves. This led to the creation of the Scottish Dementia Working Group (SDWG). This group lets people with dementia challenge misconceptions about their condition, and change aspects of their care that they are unhappy with.

The original research spent 12 months interviewing 10 people with dementia and their family carer. The idea was to change the focus of research so that people with dementia could explain how it feels to live with dementia on a daily basis and over the course of their lives.

The SDWG was created as a direct result of these discussions. They decided that creating a group of people with dementia would mean that they could talk directly about their own needs. It would make them more visible and able to campaign for their own rights. It would also show that people with dementia were capable of changing perceptions and influencing their treatment.

The SDWG was co-founded by Heather Wilkinson and James McKillop, a person with dementia who chaired the group for its first six years and has since been awarded an MBE for his services to dementia.

The research provided three main points that formed the basis for the working group:

  • Those with dementia have an important and substantial contribution to make to dementia research, policy and practice;
  • Any challenges to their involvement can be successfully addressed;
  • Researchers and people with dementia can work together effectively.

These findings challenged the widespread ideas about the extent to which people with dementia could contribute to research into dementia and the care provided to them.

Securing the government's recognition of dementia as a national priority and the development of the Scottish Dementia Strategy would have been impossible without the active contribution of people with dementia through the Scottish Dementia Working Group
Henry Simmons, CEO, Alzheimer Scotland, at the inaugural meeting of the EWGPWD
What happened next? 

Dementia policy is now directly influenced and informed by people with dementia through the SDWG, who are the only activist group of people with dementia in the UK.

In 2007, the Scottish Minister for Public Health set up the Dementia Forum. Dementia was made a national priority and the SWDG meet Scottish health ministers two or three times a year. Two SDWG members were invited to join this influential group. During a visit by the First Minister in 2009 they discussed the importance of challenging public stigma and misconceptions of dementia.

In recognition of the SDWG’s contribution at a celebration reception at the Scottish National Gallery in 2012, Nicola Sturgeon praised their work and highlighted just how far the group had influenced the shift in attitudes in Scotland.

Members have contributed to three training DVDs (United We Stand, Listening to the Experts and Through Our Eyes) and worked in partnership with Health Scotland and Alzheimer Scotland to produce a DVD entitled Living Well with Dementia. Group members helped launch the NHS Education for Scotland (NES) DVD Promoting Excellence.

The influence of the SDWG’s methods has been recognised internationally. In April 2012, a European Dementia Working Group was formed at a meeting of SDWG in Glasgow, modelled after the Scottish group to ensure representation of people with dementia across Europe. The first meeting was held in Vienna in October 2012. The SDWG were invited to address the meeting and were cited as being a "particularly successful example" of a campaigning group run for and by people with dementia. SDWG members have spoken at major international conferences and have had a presence at Alzheimer's Disease International and Alzheimer's Europe every year.

Media coverage, including interviews to the press, radio and television, has helped to raise awareness about living with dementia and to challenge stigma. Notable examples include interviews with the Guardian, the Sun, and the BBC.

About the researcher(s)

Co-director, Centre for Research on Families and Relationships

Research unit

Subject area:
  • Interdisciplinary Social Sciences in Health

Funder(s)

  • The Royal Society of Edinburgh
  • The University of Edinburgh
  • Economic and Social Research Council
  • Carnegie Trust for Scottish Universities
  • Alzheimer Scotland

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