Our new research project is focused on young onset dementia. We want to hear from people with the condition, as well as their loved ones and carers, about the support they receive with managing it.

People with young onset dementia first experience symptoms before the age of 65. This means their support needs might be quite different from those of older people with dementia.

Different challenges

Project Manager Alison Holloway says:

Dementia is now the leading cause of death in the UK. We’re all aware of it, but we tend to think of it as a condition that affects older people – and this isn’t always the case.

Someone with young onset dementia might face challenges an older person with the same condition doesn’t have to consider. They may still be working in a job that pays a mortgage, and they might have children who continue to depend on them financially. Perhaps they still drive their own car every day and need guidance on how their diagnosis will affect their independence.

We want to investigate how well the support available to local people with young onset dementia is addressing questions like these. We’re also interested in how easy it is for people to find the kind of support they need, and whether it’s made available to them at the right time, in the right way.

Every voice matters

At least 200 people under 65 in Buckinghamshire have a diagnosis of young onset dementia. This figure does not include those who have not yet received a diagnosis, or those older than 65 who first experienced symptoms of dementia before that age.

We want to know how those individuals, as well as their families and carers, feel about the support they receive. People can offer their feedback in confidence, either online or by chatting to Alison.

We’re no longer seeking participants for this project. Thank you for your interest.

You can still tell us about your experience here.

Impact and improvement

At the end of the research period for this project, we’ll write a report that includes recommendations for improving support for people with young onset dementia. This will be shared with service providers, policymakers and commissioners who will be asked to respond to our findings.

Zoe McIntosh, Chief Executive of Healthwatch Bucks, says:

This project is a great example of the work we do at Healthwatch Bucks. Only by listening to the voices of people who need support with young onset dementia – including the families, loved ones and carers of those who live with the condition – can we really understand whether their needs are being met.

By going out into the community and collecting that vital feedback, we can influence decision-makers to improve what’s on offer to the people of Buckinghamshire in future.

Published on 3 Nov, 2022 (updated 9 Apr, 2024)

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