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