Our services: Young Onset Dementia Activists group

In the first of a new series, we showcase the work of different BLG Mind services, and the impact they have on those who use them.

We begin with the Young Onset Dementia Activists group. The service, which was officially launched in August 2021 following a successful pilot, is aimed at people living with young onset dementia (those who receive a diagnosis aged 65 or under) and the friends and family who care for them. 

The group offers peer support and activities, as well as the opportunity to be involved in raising awareness of issues connected to young onset dementia. 

The YODAs bowling

The YODAs enjoying a bowling session.

BLG Mind’s MindCare Young Onset Dementia Activists group has been variously described as “life-changing”, “amazing” and “like having a warm blanket put around you”.

The group clearly means a great deal to its participants, who are affectionately known by their acronym YODAs, as well as to those who care for them.

“Coming to the group is like having a warm blanket put around you.”

The group began life in May 2021 after Bromley Dementia Services manager Saira Addison proposed the creation of a service specifically aimed at people with young onset dementia.

Saira said: “Most dementia services are aimed at older people, so aren’t able to offer the kind of support that younger people who have dementia need.

“Before we set up YODA, we had people as young as forty accessing the MindCare dementia services, and I felt strongly that we should create something that could offer support around the issues younger people are more likely to face, such as employment and relationships with children. We also wanted to offer activities that were more geared towards younger people who are more physically active.”

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 service was designed by the people using it: from the beginning, the YODAs were heavily involved in the form the service took, with Saira and her team designing it around their input.

Since the group’s formation, the YODAs, who currently number 16, have participated in everything from bowling to Bollywood dancing, and meeting miniature horses to sampling the best pie, mash and liquor within the M25. They have even enjoyed afternoon tea with stage and screen star Mark Gatiss at London’s Langham Hotel.

While a key focus of the service is fun, the mere act of leaving the safety of home to attend the group can be hugely positive to the mental wellbeing of its participants. People with young onset dementia can become socially isolated, which may lead to a decline in their mental and physical health. Studies have shown that engaging in new activities can have significant benefits for both the person living with the condition and their loved ones.

Saira said: “Being involved in activities and pushing themselves to do new things gives the YODAs a sense of engagement, self-esteem, purpose and joy. It lifts them up emotionally, as well as their loved ones who accompany them.”

One such activity was the group’s recent trip to Essex to sample the delights of Sainsy’s Pie and Mash shop (pictured below).

“That trip was particularly challenging for the YODAs because it took them a long way out of their comfort zone of Bromley,” said Saira. Once ensconced in Sainsy’s, the group was delighted to learn that the restaurant’s genial owner, Danny Sains, and his wife Carlene were the first ever couple to get married at Selfridges in London after it acquired a wedding venue licence.

“Danny was so welcoming, and the YODAs were fascinated to hear that he and Carlene made history when they married at Selfridges. It made a special day out even more special,” Saira recalled.

The YODAs enjoying a pie, mash and liquor feast at Sainsy's

The group also works to raise awareness of the issues around young onset dementia. They will be meeting with Ellie Reeves, MP for Lewisham West and Penge, in the new year, and have contributed to a leaflet on the condition produced by Oxleas NHS Foundation Trust.

So passionately do the YODAs feel about their group that despite living with a life-changing condition they recently undertook a 5km sponsored walk around Beckenham Place Park. Such is the goodwill towards the service that donations soared past the £2,500 target to reach more than £5,000.

YODA is clearly a hugely positive force in the life of its members, who regularly get together as friends outside of the group’s weekly meeting schedule.

Beverly, whose husband Kevin lives with young onset dementia, probably speaks for all of the members when she sums up what YODA means to her.

“I can’t tell you what a difference it’s made,” she said. “Once you get your diagnosis, you feel very isolated, but because of the group we have met some incredible people we wouldn’t have met otherwise, and we all support each other.

“Without this project, we’d have carried on fighting through every day with no joy in our lives.”

The YODAs flying high at a circus skills workshop

YODA Gallery

Click on the images to enlarge.

More

The MindCare Young Onset Dementia Activists group (YODA) is open to anyone in Bromley, Lewisham and Greenwich who has developed dementia before the age of 65, as well as the family or friends who care for them. Find out more.

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