As part of activities being held to mark our 'Celebration of Involvement' throughout July at Alzheimer's Society, Trevor Salomon (Co-Chair of the Lived Experience Advisory Panel) and Simon Lord (Head of Innovation)reflect on how people affected by dementia have been involved with the Longitude Prize. 

From tasks undertaken to adjustments made to ensure the LEAP feel empowered and supported, this honest conversation discusses both the real life challenges and benefits of involving people with lived experience of dementia in projects, as well as advice for anyone looking to do the same.

Episode 18: The involvement of those with lived experience of dementia is invaluable

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For our latest Dementia together podcast we spoke to Teresa Davies, in north-east Wales.

Just over a decade ago, Teresa was diagnosed with young-onset Alzheimer’s. 

This came as a shock and left the usually positive Teresa in a dark place. 

She says she ‘didn’t know how to cope’ after her diagnosis and wasn’t given the right support.  

But a chance meeting turned things around and helped Teresa to find a new purpose. 

She now lives as well as she can with dementia and supports others affected by the condition.

You can visit alzheimers.org.uk/publications for our range of publications and factsheets designed to support and inform anyone affected by dementia. 

For personalised information and advice, call our Dementia support line on 0333 150 3456, or for Welsh speakers call 03300 947 400.

'A new purpose' – Dementia together podcast March 2024

For our latest Dementia together podcast we spoke to brothers Adam and Neil Joesbury and their dad Bob, in Birmingham. 

Bob has vascular dementia and the family works together to support each other.

Adam has a learning disability and cares for Bob. This means Neil can continue to go to work and all three can be independent.

At first, it was difficult to find the right support for Adam. He knew something was wrong with his dad, but found it difficult to understand.

This changed when a dementia adviser from Alzheimer's Society gave him the support he needed.

Since then, Adam has been using his voice to try to change things for the better for carers with a learning disability – he doesn’t want anyone to face the same challenges he did. 

Your donations play a vital role in ensuring people affected by dementia are aware of the services offered by Alzheimer’s Society, especially in what is a difficult time for everyone. To donate, visit alzheimers.org.uk/give or call 0330 333 0804.

'Turning things around' – Dementia together podcast January 2024

For our latest Dementia together podcast we spoke to retired nurse and youth worker Anne Hoad in Deal, Kent.

Anne was diagnosed with a rare form of dementia called posterior cortical atrophy (PCA) in 2021. Anne's PCA was missed by her GP at first. They initially prescribed her anti-depressants. 

After speaking to friends who had experienced depression, Anne's husband Tony realised that her symptoms were quite different. They returned to Anne's GP and were able to get an accurate diagnosis and treatment.

Anne and Tony tell us how life has changed following this diagnosis and how they cope with the daily challenges of living with a rare dementia.

Your donations play a vital role in ensuring people affected by dementia are aware of the services offered by Alzheimer’s Society, especially in what is a difficult time for everyone. To donate, visit alzheimers.org.uk/give or call 0330 333 0804.

'Making your own way' – Dementia together podcast November 2023

For our latest Dementia together podcast we spoke to retired teacher Nellie Suffolk, aged 82, in Bristol. 

Nellie was diagnosed with Alzheimer’s disease around six years ago. This diagnosis came as a shock because Nellie had put her symptoms down to getting older.

Nellie was born in Zambia when it was still under British rule and was one of the few girls to complete primary education at the time. She spent her life in education, teaching and studying across the UK and in several African nations.  

Nellie tells us how she remains as independent and active as she can following her diagnosis.

Your donations play a vital role in ensuring people affected by dementia are aware of the services offered by Alzheimer’s Society, especially in what is a difficult time for everyone. To donate, visit alzheimers.org.uk/give or call 0330 333 0804.

'Active and independent' – Dementia together podcast September 2023

For our latest Dementia together podcast we spoke to Rashmi Paun, aged 77, in Brighton. Rashmi, a former physics teacher, initially put his memory problems down to age but was later diagnosed with Alzheimer’s. 

Rashmi had always had a way with numbers, but his wife Maggie soon had to take on more daily tasks, including the couple's finances. 

Maggie says it was difficult to navigate life after a diagnosis, with 'no clear roadmap', and she is grateful for support from local groups and charities.

Listen to find out more about Rashmi and Maggie's experience.

Your donations play a vital role in ensuring people affected by dementia are aware of the services offered by Alzheimer’s Society, especially in what is a difficult time for everyone. To donate, visit alzheimers.org.uk/give or call 0330 333 0804.

Episode 18: The involvement of those with lived experience of dementia is invaluable

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