At tide we believe that carers are the agents of change in their own lives, their communities and wider society. We want carers of people with dementia to realise the true value of who they are, what they do and their potential. We see a world where the human rights, voices and needs of carers are fundamental to the structure of society. We work to achieve this through our development programme, involvement network and influencing opportunities.
Carers realising the value of who they are, what they do and their potential is crucial. We want carers to reclaim the narrative of what it means to care for someone with dementia, own their experience and take pride in it. The current definition of a carer has societal expectations, assumptions and implied recognition attached to it and this is too limiting to what the true lived experience is like. We need carers to break through this and for them to reclaim this part of their life.
As part of this we need to speak up openly and honestly about what the unique reality of caring for someone with dementia is. Not in an attempt to glorify carers or make the experience out as positive or negative. We want carers to own their truth with all its good, bad, ugly, funny, rewarding and difficult aspects of it. We recognise that every single carer of someone with dementia has a different and unique experience. They are not defined by this experience and their caring role in the same way as a person with dementia is not defined by their diagnosis. Every truth deserves to be told – only then will we achieve the vision of a world where the human rights, voices and needs of carers are fundamental to the structure of society.
Members of our advisory group star in this short video on the reality of caring. Their statements reflect what carers on our network have said about the reality of caring to them. Please get in touch to share your experiences.