Another right that was identified as important by carers can be found in the Scottish charter of rights for people with dementia and their carers. Specifically article 14: the right to information and to participation in decision making. Scottish dementia policy is world renowned for its involvement of people with dementia and their carers at the heart of the process. Yet the same principle is not always upheld in the practice of providing care and support to people with dementia and the people that care for them. There is a distinct call from our carers to be heard and listened to based on the expertise they have obtained from providing care for a loved one.
Ray says with regards to this “we know the person better than anybody. This must be considered. I know James best, professionals might know the condition but I know the person.”
This same principle extends to listening to all carers and every experience, and not just broadcasting the positive ones. Ray says: “my story might be mostly negative, but I want positivity, so that no-one has to go through my awful journey. My awful journey has given me the strength to make things better. This journey has made me passionate to make a change for the people coming behind me. I want to share my experience so that professionals get a better understanding to make more educated policies and strategies, and put actions into place. We need to be listened to: we’re the ones who know how difficult it is. We know where change is required and we need to be heard. I’m not going to apologise for my story, it’s the truth. Everybody’s story matters. There’s value in each and every story, and if we invest in it then it becomes even more valuable. This should be used more in policies.”
Anna Buchanan ends the care cameo with three calls to action for health and social care professionals:
1) Develop a better understanding of how human rights impact our day to day work.
2) Integrate the new health and social care standards into our thinking.
3) Consider what the balance of rights mean for you.
We want to extend these calls to action to unpaid carers of people living with dementia: consider what human rights mean to you and how they impact your day to day life. Your voice and your story matters and as a society we need to listen to them.