Saira Addison hosting the Young Onset Dementia Activists event.

Young-onset dementia support group that's a lifeline for its members

Young Onset Dementia Activists in south-east London is giving people affected by dementia new hope and purpose.

Young Onset Dementia Activists – known as YODA – is a peer support group that gets involved in all kinds of activities, including raising awareness and funds, in three south-east London boroughs. It’s a great example of what people affected by dementia can achieve when they come together. 

The weekly group is open to anyone in Bromley, Lewisham and Greenwich who’s been diagnosed with dementia aged 65 or under, and the friends and relatives who support them.

It’s run by the mental health and dementia charity Bromley, Lewisham & Greenwich Mind and is part of the DEEP (Dementia Engagement and Empowerment Project) network.

As usual, the group has gathered on a Friday morning in Beckenham, but today is a far from typical meeting. This is the MindCare YODA Festival, celebrating 10 years of DEEP. Among various sessions and activities, the group will be unveiling a new film that features members’ experiences of dementia and being part of YODA.

A Young Onset Dementia Activists group member speaking.

Life-changing 

In front of guests including Ellie Reeves, MP for Lewisham West and Penge, and Bromley’s Deputy Mayor Christine Harris, the origins of YODA are explained by Saira Addison, the group’s facilitator. 

‘My dear friend, like a second mum, got diagnosed with dementia. I really didn’t know what was going on,’ she says. 

‘It didn’t just change her life, it changed my life. I resigned from my job, went part-time and decided to become her carer.’ 

Saira later became Bromley Dementia Services Manager at the local Mind, and she was the driving force behind YODA’s creation last year. 

Members share experiences, support each other, and enjoy activities such as poetry writing, dancing, walking and lunches out. They’ve also taken part in everything from bowling and Bollywood dancing to meeting miniature horses!

Impact 

The group’s new film includes video footage, still photos and animation, providing a snapshot of life as a YODA member. They’re shown discussing dementia, taking part in activities and highlighting the group’s positive impact. 

Back in the room, members are invited to share more of their personal experiences. Marilyn is here with her daughter, who explains how dementia has affected her mum. 

‘Mum was a nurse and I’d get phone calls, “I’ve forgotten my patient’s house”. She was forgetting a lot of things. I thought she was maybe depressed because my grandad had passed away,’ she says. 

‘Mum has always been a sociable person, but she didn’t want to go to a club where she’s the youngest one there. 

‘The journey hasn’t been easy, but it’s nice to see her doing things that everyone else is doing. She did circus skills! She’s having some sort of life.’

A daughter standing and speaking at a Young Onset Dementia Activists event.

New lease 

Debs, a former city trader, values the relationships she’s developed through the group. 

‘I knew something was missing, but I’d just try and cover it up. Dementia is one of those things you think will never happen to you,’ she says. 

‘YODA gave me a whole new lease of life – it’s everything to me. If this hadn’t been here, I don’t know what I’d have been up to! 

‘The effort made by Saira is immeasurable. Everyone is always there for each other and it really means a lot to me.’ 

Christine, who has dementia, is also full of praise for Saira. 

‘When I met her, I realised “wow”, I was just blown away. She taught me so much,’ she says. 

‘Thank you for helping me to come to the understanding that you can get help out there.’ 

Supporting Christine is her 21-year old son, Jonathan. 

‘It’s nice to see Mum happy and have a different kind of purpose every week,’ he says. ‘I’ve seen the group have a good effect on her – she loves coming here.’

Godsend 

Chukwudi was diagnosed with vascular dementia in April, aged 53, explains his partner Neke. 

‘He comes here, is happy, and we enjoy it. He can’t wait for Friday to come,’ she says. ‘If he’s at home, he’s just sleeping. I’m thankful for this place – there is help.’ 

Matthew, who has had Parkinson’s since his late 20s, was diagnosed with Lewy body dementia last year. 

‘It’s been amazing since coming here,’ he says. 

Veronica, Matthew’s mother and carer, describes YODA as an ‘absolute breath of fresh air’ for her son. 

‘All the way through Matthew’s journey, nothing for his age group was applicable, but this place is an absolute godsend,’ she says. ‘It’s the highlight of the week and we’re eternally grateful.’

A mother and son from the Young Onset Dementia Activists standing and speaking.

Having launched as a pilot project in June 2021, YODA continues to provide its members with support and purpose. 

Alan is a former police officer who attends with his wife Ann, who has dementia. 

‘I’ve dealt with other people’s disasters, but then I was handed our own disaster,’ he says. 

‘YODA has given me some of the tools to deal with it. Given me a lifeline. We’re now involved, I’ve met other carers. 

‘This group has given us hope, and that’s all that you can ask for.’

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2 comments

Currently feeling very scared as having dementia symptoms etc . Reading these stories was kinda uplifting & gives me hope at least . If i get the news i fear ; i would love to meet up with these people Unfortunately i live in sutton ,

Hi John,

Thank you for reaching out. Please know that you are not alone, and we are here for you.

If you have symptoms of dementia we recommend speaking to your doctor about your symptoms. You can read more about the process of getting a diagnosis and tips for talking to your GP on this page: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/dementia-diagnosis/how-to-get-dementia-diagnosi

We also recommend calling our Dementia Connect support line on 0333 150 3456 to speak with one of our trained dementia advisers. They can listen to you and provide advice and support specific to your situation. More information about the support line, including opening hours, is available here: https://www.alzheimers.org.uk/dementia-connect-support-line

To look for local dementia services - such as support groups, peer groups and activity groups - please search on this page: https://www.alzheimers.org.uk/get-support/your-local-dementia-support-services

We hope this helps, John.

Alzheimer's Society blog team