I spent a good part of today at a meeting of the Scottish Dementia Working Group. This group comprises people who have a diagnosis of dementia in varying forms and who are involved in campaigning to raise awareness and acceptance in community and to change local and national government policy. They are also involved in changing the practice of health and social care services not just in Scotland and the UK but in Europe and the rest of the world.
They are people of great humour, compassion, energy and wisdom. None of them are "sufferers" as they are all too often described. Rather, they are living with a diagnosis or awaiting diagnosis and re-orienting themselves in life.
Members spoke articulately and movingly of some of the struggles they had faced and of the progress they had made in educating others in their different social and community settings about their needs and challenges and achievements. All of this was done with incredible humour.
One man described the excruciating darkness through which he journeyed in the first year of diagnosis, the isolation and fear he experienced, and then had everyone laughing as he regaled us with tales of how he can now go into the local newsagents, pick up his daily newspapers and leave without paying because the local shopkeeper knows which papers he likes and that his wife will pay for them next time she is there. He has a similar arrangement with the local barbers.
None of the folk there today would consider themselves exceptional and yet each is making a vast difference in their own way and in their own community and, in turn, making a difference for others living with a diagnosis of dementia as well as giving others the opportunity to be more inclusive and aware.
There are few families untouched by dementia today so it is incumbent on all of us to transform our communities into places of safety by listening to those who are living with a diagnosis.
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