May: Opened the Alzheimer’s Society Annual Conference
September: governance work completed, and the group opened wider membership to anyone with a diagnosis of dementia. New members recruited.
George elected as new Chair, along with two Co-Chairs
November: website launched.
February: Inaugural meeting held and the name of the group was agreed as the ‘3 Nations Dementia Working Group’ (3NDWG). We went with ‘3 Nations’ (England, Wales and N.Ireland) as that is who we aim to represent, consult with and work on behalf of.
Hilary became the first Chair and two Vice Chairs were elected.
Regular steering group meetings commenced, which initially focused on the infrastructure and governance requirements to open up the group to wider membership and responding to requests from professionals and organisations.
November: Hannah Fitzgibbon appointed as our Project Officer/Facilitator to provide admin and support for the group.
Agreed on logo and branding for the group
January: Hilary, Chris and Kathryn Smith (Alzheimer’s Society) attended a two day meeting in Scotland with the Scottish Dementia Working Group and Alzheimer’s Scotland.
March: Hilary, Chris and Matt prepared a business case for funding the group and submitted it to the Alzheimer’s Society board for consideration.
June: The Alzheimer’s Society Board approved funding the group as an independent group but supported administratively by the Alzheimer’s Society. Keith then joined us to help progress the direction and purpose of the group.
December: additional steering group members were identified representing the Alzheimer’s Society regions across England, Wales and Northern Ireland to provide comprehensive geographical representation. It was identified that diversity and representation from different types of dementia and stages needed addressing in the future.
We agreed we needed to learn from other groups already running.
November: Alzheimer’s Society agreed to fund a fact finding visit to Scotland to visit and see their working group in action, plus to also learn from Alzheimer’s Scotland and other members of the group.
Hilary and Chris came together, and after many conversations approached Jeremy Hughes, CEO of the Alzheimer’s Society, about taking user involvement to the next level by creating a working group. He agreed we should prepare a proposal for the AS to consider.
A feasibility proposal was prepared with help and assistance from Matt, Alzheimer’s Society Participation and Engagement Manager.
Hilary and Chris were independently pursuing the idea of creating a working group of people with dementia covering England and Wales.
Following much talk about patient and public involvement, some of us felt there was too much talk and not enough involvement action. We wanted to follow the lead of Scotland, Ireland and Europe who created their own working groups of people diagnosed with dementia.
The Alzheimer’s Society (AS) had made initial steps in involvement, engagement and participation, but like many institutions and organisations, this meant consulting with or involving a single/few person(s) with dementia, usually in the early stages and not representative of lived disease experiences.
Although there to share their thoughts and experience, anyone taking on this engagement role is unintentionally put under tremendous pressure as the sole or one of few representative(s) of all those living with dementia.
We felt that over time the creation of a working group of people diagnosed with dementia would be able to address some of these concerns and raise a collective voice for the improvement of lives affected by dementia.