A Good Life With Dementia (AGLWD)
Damian explained the origins of AGLWD.
We sought to provide information for people with dementia about dementia. There were only really Carer’s Information programmes out there with sessions covering ‘behaviours of your loved one’. We imagined how awful it must be to be brought along to such a programme as a person with dementia listening to others offload about how difficult you are.
Damian referred to a blog he wrote on this topic https://dementiafriendly.wordpress.com/2015/09/21/one-sided-or-lob-sided-dementia-care-is-still-way-off-balance/
We wanted people with dementia to have an equal opportunity to offload about the behaviours and psychological symptoms of being a stressed carer! (BPSC).
With the York Minds and Voices group we looked to create a post diagnostic course that the group members themselves would create together and deliver together. The first programme was written within minutes – because this was the sought of conversation that we’d been having within Minds and Voices for some years – about how positive life can be; about our rights to carry on going out shopping or having a say and to belong as family members, community members and as local citizens.
Damian wrote about ‘The Magic of Minds and Voices’ in another blog that covers this: https://dementiafriendly.wordpress.com/2017/03/28/the-magic-of-minds-and-voices/
Together we watched this 5-minute video about the first York Good Life course.
https://www.youtube.com/watch?v=XRS4Aha068Y
Good Life courses have been created and delivered in York by York Minds and Voices (we are on our 3rd course), in East Yorkshire by the East Riders (also on our 3 course) and in Fife by the STAND group (also on their 3rd course!)
We are currently carrying out a small research ‘Theory of Change’ project on what it is that makes a difference in the Good Life approach. Hopefully this will lead to a larger more comprehensive research study.
Focus groups of past ‘learner’ and ‘tutors’ have been really moving. At one focus group 7 of 10 people with dementia had mentioned having suicidal thoughts around the time of diagnosis. Those who’d attended as learners and as course tutors said that it was life changing.
Each course produces it’s own set of resources that match the agenda of learners and tutors alike including ‘what we learnt’ documents; each groups own locally produced ‘manifesto’ and some key information and first ports of call. The Humberside Memory assessment service have packaged the East Riding resource to share across their service to all those recently diagnosed. Each Good Life course has led to the creation of a new group of peers continuing to meet with existing groups such as Minds and Voices and as new groups such as the East Riders.
