Work with local communities

Former Department of Health (DH) civil servant Ruth Eley – now chair of the carer involvement group tide (Together in Dementia Everyday) – gave short shrift to the government’s proposed Major Conditions Strategy (MCS), a combined strategy for dementia and five other conditions including cancer and heart disease.

While at the DH Eley had a leading role in the development of the 2009 National Dementia Strategy: “Now here we are doing it all again,” she said.  “Yawn, yawn, dementia is not going to get its voice heard with the MCS.  We need to work with our local communities, that’s what’s going to bring about change.”

Working with local communities, groups of family carers and professionals, is a core task for tide as it seeks to involve carers as equal partners in supporting people with dementia. Engaging carers in “co-production” is key, partnering professionals and peers in creating solutions to their own needs and those they care for.

“We offer practical advice and tips, and a safe space where people can share things and know they’ll be understood,” Eley said.  It was neatly summed up on film by a carer called Debbie from Ayrshire:

“You can feel very lost navigating your way around services.  When the co-production ship sails up to you, it throws a lifebelt to you, pulls you on board and throws its arms around you. It promotes an empathetic connection between people that is so important when carers are feeling alone.

“My advice to professionals is hold your hand out to carers, let the carer tell their story, throw the lifebelt and be there to administer the hug at the end.”