The story so far
James McKillop, who was diagnosed with vascular dementia in 1999, meets Social Researcher Heather Williamson and both wonder why there is no group for people with dementia. There is a voice for carers and professionals about dementia issues but no group for people with dementia.
A conference is organised in Dundee by Heather and James for professionals and people with dementia. Attendees include some professionals who go on to become co-opted members of the SDWG. Staff from Alzheimer Scotland and Turning Point also attend with people with dementia and it is here that the idea for a Group is endorsed and a small steering group established. The Group writes a constitution and more members join, coming mainly from the areas where the professional members of the group have direct contact with people with dementia. The Scottish Dementia Working Group is born, with James McKillop as its first Chairperson.
A meeting is held by group members to decide whether the group will look for funding as a completely independent body or accept Alzheimer Scotland’s invite to come under their umbrella. Members choose to link in with Alzheimer Scotland who provide initial financial and staff resources to fund and service meetings.
Initial Alzheimer Scotland funding is boosted by money from Comic Relief, and the group’s first staff member, National Coordinator Philip Bryers, is appointed. Further Comic Relief funding allows the staff team to grow, with National Development Officer and administration posts created.
James McKillop stands down as Chair and is replaced by Edward McLaughlin. The group’s influence continues to grow, with members speaking at a variety of events and responding to consultations from government and the NHS. The group prioritises campaigning around early diagnosis, respite provision and access to medication as well as drawing up a ten-point plan with their vision for 2010.
By 2009 the group are well established with a committee of 18 and many members outwith this number. Members attend Alzheimer’s Disease International Conference in Singapore, meet with First Minister Alex Salmond and are consulted about Scotland’s first ever National Dementia Strategy.
Agnes Houston becomes Chair and the group continue to go from strength to strength. An independent consultant is appointed by the group to carry out a review with a view to future development. She describes the SDWG as a successful, influential and highly regarded group achieving the majority of its aims and objectives, especially across campaigning and awareness raising.
The Group celebrate their 10 year anniversary and receive greetings and well wishes from individuals and organisations around the world. The success of the group sees the staff team grow, with the National Coordinator role becoming shared. Henry Rankin is elected Chair.
Increased funding from the Scottish Government sees the creation of more Development Officer roles: one in the North East and another specialising in Communications. The group meets to review their campaigning work and decide to focus on the three main areas of: building a stronger SDWG, raising awareness of dementia within the transport sector, and GP training. This year, member Agnes Houston is also awarded a Lifetime Achievement Award at the Scottish Dementia Awards for her campaigning work.
The group continue their tireless campaigning work, taking their message internationally when Pat McGonigal presents at Alzheimer Europe conference in Copenhagen on the group’s increasing use of technology, and Nancy McAdam presents the ‘Travelling Safely with Dementia’ work at Alzheimer Disease International in Budapest.
Group members, Pat McGonigal, Henry Rankin and George Woods take part in the short film ‘Living and Learning with Dementia’ to show that people with dementia can continue to learn new things after their diagnosis. Former Chair, Henry Rankin is recognised for his hard work by getting a Lifetime Achievement Award at the Scottish Dementia Awards. Vice Chair Carol Hargreaves continues to represent the group on the EWGPWD (European Working Group People With Dementia) and travels to meetings in Brussels, Berlin and Luxembourg.
Chair, Archie Noone travels to Chicago for the Alzheimer Disease International Conference where he presents a poster that showcases the ‘Living and Learning with Dementia’ film.
The SDWG continued to campaign and raise awareness with a stronger focus on more local work. At a national level, the group had two presentations (oral and poster) at the Alzheimer Europe Conference. These were on 'Training and Education of Care Professionals', talking about the group's work with the Dementia Champions Programme and how it fits with the group's priority of 'Supporting Workforce Development'. The poster presentation was 'Developing our Campaigning Priorities' and looked at how the group decided on their priorities for 2019-20.
In 2020, things changed dramatically for the group due to the Covid pandemic. All work had to be moved online however our campaigning did not stop. We shared our stories with a series of blogs from members, provided representation and input on a range of groups and committees and continued to raise awareness wherever we could.
In 2022, the group celebrated an incredible 20 years of campaigning. Over the last 20 years, SDWG members have worked tirelessly to campaign and raise awareness at both national and international levels. They have informed and engaged with Scotland’s National Dementia Strategies, and they have worked with health and social care professionals, sharing their lived experiences to help make things better for future generations. The group have travelled across the world to spread their message, challenging stigma, and ensuring the voices of people living with dementia are heard. SDWG is still going strong to this day and is known worldwide. Visitors from countries as far away as Japan have come to Scotland to see how the group is run and when they have returned home, they have formed their own dementia working groups.