Member showcase: Young Onset Dementia Activists group

Supporting people living with young onset dementia in Bromley, Lewisham and Greenwich

The Young Onset Dementia Activists group – better known by its acronym YODA – is part of Bromley MindCare, which is managed by Bromley, Lewisham and Greenwich Mind, one of the largest local branches of the Mind network.

The group started life in May 2021 after Bromley Dementia Services Manager Saira Addison realised there was a desperate need for dementia support for younger people.

“We had people as young as 40 accessing our dementia services, and I felt strongly that we needed something which focused on the issues people with young onset dementia are more likely to face, such as employment and relationships with children. We also wanted to offer activities more geared towards younger people who are more likely to be physically active,” Saira said.

Going from strength to strength

Since then, the group has gone from strength to strength, and now supports 20 people. From the start, the participants were heavily involved in the form the service took, with Saira and her team shaping it around their needs. YODA offers activities, days out, arts and crafts and most of all peer support and social interaction, so vital with a condition that can be hugely isolating.

From Bollywood dancing to cycling at the Queen Elizabeth Olympic Park to creating animated films to going on a quest to discover the best pie and mash in the southeast, the YODAs engage in a varied and exciting programme of events. They have even enjoyed afternoon tea at London’s prestigious Langham Hotel in the company of Sherlock star Mark Gatiss, who is related to one of the group members. But, as Saira explains, fun is just one element of these activities.

“Pushing themselves to do new things gives the YODA members a sense of engagement, self-esteem, purpose and joy. It lifts them up emotionally, as well as their loved ones who accompany them,” she said.

Raising awareness of young onset dementia

Raising awareness of the issues around young onset dementia is another important part of the group’s purpose. They have met with local MP Ellie Reeves and contributed to a leaflet about young onset dementia produced by Oxleas NHS Foundation Trust. The group also undertook a 5km sponsored walk around a local park to raise awareness and funds, more than doubling their £2,500 fundraising target.

The YODAs officially meet every Friday, but many of the group’s members have formed close friendships and get together at other times. They are in little doubt about what the group means to them.

Alan, whose wife Ann is living with young onset dementia, said: “Without this project, we’d be struggling and trying to deal with this alone but now we have support.”

Another member described YODA as, “Like having a warm blanket wrapped around you” while another commented, “Without YODA there is no support network.”

Having just been awarded funding for a further two years, the future is looking bright for YODA. As well as planning a host of new activities, Saira and the team want to welcome more local people into the YODA family.

“No one with young onset dementia should feel alone or isolated,” says Saira. “I want as many people as possible to benefit from the friendship, fun and support YODA can offer.”

More information

YODA is open to everyone living with young onset dementia in Bromley, Lewisham and Greenwich, as well as the friends or family members who care for them.

The group meets at the MindCare Dementia Support Centre in Beckenham every Friday from 11am to 1pm.

For more information, please contact Bromley Dementia Services Manager Saira Addison: email Saira.Addison@mindcare.org.uk