It is a privilege to write the first blog piece for our new Dementia Carer Voices website and in particular to be working with the team on our YOU can make a difference pledge campaign.
Thinking about my own pledge takes me back to a speech that I made in Parliament several years ago highlighting the “loneliness” described by Terry Pratchett on receiving a diagnosis of dementia. He said it felt as though he was standing on a beach completely alone with the world receding in every direction. Terry`s courage to speak up and speak out along with my own experience as a carer prompted me to believe that people with dementia and their carers deserved better dignity, support and respect from diagnosis to end of life. But more than that they needed their rights reaffirmed. Their right to participate in decisions about their care, their right to have someone accountable, their right to be treated equally, to be empowered and to have these rights underpinned in law.
The Charter of Rights for people with dementia and their carers was a milestone in the dementia journey and I am proud that it started in the Cross Party Group on Alzheimer’s which I set up and chaired.
The problem is that despite being embedded in the Dementia Strategy, Standards of Care for Dementia in Scotland and workforce plan – not enough carers know about it. To all people with dementia and their carers – know and claim your rights. For my part I pledge
“No stone will go unturned and no door unknocked to support people with dementia and their carers to know and claim their rights”.
Irene Oldfather, Director : Health and Social Care Alliance