Dementia Adventure (DA) has invited a select group of people living with dementia and their partners to form a new special interest group for ‘outdoor activity’, with the specific purpose to inform and guide the work of DA. The group first met in February 2017 and reviewed the DA 2020 business plan, to ensure that the lived experience of people living with dementia continues to be at the forefront of our decision making as we plan to reach and benefit more people with our work.
The members of the group come from a variety of different backgrounds and also represent various dementia groups from around the UK. They are all inspiring people who are changing the way people view dementia whether that be through public speaking, training, or influencing policy.
The group were selected in a variety of ways. Many have long-standing connections with DA, either having been part of our holidays, training or research related projects in the past. All of them share a passion and interest in the benefits of outdoor activity and some individuals were invited due to the nature of the work they do within the sector and were recommended to us through the DEEP network.
The group consists of:
At the first meeting, the group took time to introduce themselves and discuss and agree the terms of the group, including establishing ground rules and expectations. They discussed how to facilitate good communication, including language to use, and how to be productive with their time together. All members of the group signed a volunteer charter which was developed specifically for individuals in the group for clarity about their role with DA.
The group considered the importance of emotional memory, not just factual memory and discussed what being outdoors means to them, the benefits of being outdoors and the need for positive risk-taking. By sharing stories, photographs and videos they reflected on their individual partnerships with DA and explored DA’s journey and work so far. The rest of the day was spent looking at the work of DA and examining its main objectives;Training, Holidays, Research, Investment, Volunteering and Evaluation, summarised by the acronym ‘THRIVE’ as follows:
As expected, the group were incredibly insightful, offering innovational ideas on all areas of DA’s charitable activities. Over time these ideas will be implemented to enable DA to shape the way it works whilst ensuring people living with dementia are at the forefront of everything that we do.
The group concluded by making a list of actions for themselves, which included sharing information about DA in their various groups and being part of DA’s training. They made arrangements to meet 3 times a year but agreed to communicate on a one-to-one basis between meetings. The group next meets in June 2017.
Everyone who attended the day said it felt like it was an enjoyable experience and that the group was ‘exciting’ and ‘productive’ – ‘not just paying lip service’, but actually doing ‘important’ work. They said the collaborative nature of the group, ‘working together for the same reasons’, with ‘mutual respect’ and ‘no labelling’ of one another felt significant.
Dementia Adventure CEO, Neil Mapes said of the day,
“We have been thinking about starting a group like this for some time and are really pleased we have dedicated the resources to establishing this group. We are also deeply grateful to the members who are individually and collectively amazing and inspiring and working with us as equal partners in shaping better lives for the beneficiaries of our work. The advocacy adage ‘Nothing about us without us’ is an important message to fully embrace and I would suggest many other organisations would benefit by including and involving people with dementia in their strategic planning and delivery.”
If you would like to know more about our Special Interest Group, please contact Neil Mapes or Aimee Day on 01245 237548.