Local support for young onset dementia

• We want to hear from people with young onset dementia, and their loved ones, about the support they’ve received
• People with young onset dementia experience symptoms before the age of 65
• They might need support with challenges that are less likely to affect older people, such as issues with employment and finances
• Feedback on local support will be used to help improve services in future.

Healthwatch Bucks, the local health and social care champion for Buckinghamshire, has today launched a new project that will investigate support for local people with young onset dementia.
People with young onset dementia first experience symptoms before the age of 65. This means their support needs may be quite different from those of older people with dementia.

Healthwatch Bucks Project Manager Alison Holloway said:
“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.”

At least 200 people aged 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 then 65 who first experienced symptoms of dementia before that age.

Healthwatch Bucks wants to know how those individuals, and their families and carers, feel about the support they receive. People can offer their feedback in confidence, via an online questionnaire or in person. To chat with Alison on the phone or face-to-face, please contact her via the Healthwatch Bucks website or on 01494 924421.

At the end of the research period for this project, Healthwatch Bucks will 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 the findings.

Zoe McIntosh, Chief Executive of Healthwatch Bucks, said:
“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.”