An Experience with the Dementia Standards Pathway

We recently spoke with Ann, a former carer for aunt and tide member based in Greater Manchester, about her experience of caring. When Ann shared her story with us, and particularly the struggles she faced accessing health and social care support, we knew this had the potential to be a catalyst for change. If you haven’t read Ann’s story yet, you can do so on our website.

Dementia United aims to make Greater Manchester the best place in the world to live for people with dementia. We reached out to Warren Heppolette, Executive Lead of Strategy and System Development at Dementia United for comment on Ann’s story and a commitment to how this won’t be a repeat story for others:

“Colleagues leading the Dementia United programme have drawn a huge amount of learning from Ann’s story. Whilst it is of course unique to Ann, her Aunt and wider family, it was clear that many of the lessons have much wider resonance. This is particularly true of information and support immediately following diagnosis, the responsibilities for good care coordination and the importance of services being integrated around the person and their family. It is our intention to use Ann’s story as we engage with partners across Greater Manchester and test implementation against our agreed standards.”

Anna Gaughan, CEO tide and Life Story Network CiC commented:

“I very much appreciate Ann’s courage in sharing her caring experience and am delighted that it has provoked a positive conversation and learning opportunity for Dementia United to address the very real challenges carers face day to day. From this and many other carer’s contributions, it is imperative that we recognise the full value and benefit of carers sharing their lived experience in terms of leading change. Carers are a vital partner in the system and need to be valued, respected, listened too and most importantly have what they share acted upon. The commitment to empowering carers to be involved as equals is far from universal across the care system. Therefore, it is all the more important that Dementia United leads by example in creating the right conditions for carers as experts by experience to be meaningfully and equitably involved. I am pleased that there is an acknowledgement that some investment of resources is needed to ensure carers are adequately prepared; trained, supported and facilitated to the point that they come to the table as equal partners. tide is pleased to be working with Dementia United and other partners to create such conditions and develop a sustainable involvement network of carers, reflecting the diversity of carers across local communities in Greater Manchester, and across the UK.”

What is your experience of being a carer, or former carer, of someone living with dementia? Does it reflect Ann’s? We would love to help give you a platform to share your story for positive change, join tide today to find out more.