I cared for my husband who had young onset dementia. I became a member of tide back in 2015. Since 2016, I have been part of tide's Advisory Group. tide offered me an opportunity to speak at the opening Plenary at Dementia Congress, so I took it. I spoke to 500 professionals with the aim of improving their understanding and helping to change their attitudes towards people with dementia and their carers. I felt it was so important for professionals working in Health and Social Care to hear from unpaid carers about their struggles. As a bonus, it also gave me the biggest boost to my confidence I've ever had.
What I found, when telling my story, was that when people empathised with my experiences it validated all the things I was feeling, whether that be frustration, exhaustion or grief. I think every carer needs this. The experiences of unpaid carers are too often overlooked or dismissed. I always emphasise the point that a dementia diagnosis is given to the whole family and that the carer is an expert by experience and a partner in care. We should be recognised as such.