An innovative study to improve the diagnosis and post-diagnostic support for younger people with dementia and their families is seeking participants to further research in this area.
The Angela Project, dedicated to Angela a lady with young onset dementia who went undiagnosed for three years before her symptoms were recognised, aims to advance services and provision for younger people with dementia and their families or supporters.
Findings from the study will enable researchers at the Universities of Bradford, Northampton and Surrey who are collaborating on the Angela Project under the auspices of University College London, to produce information and guidance on how best to support younger people with dementia and their families or those close to them, during and after diagnosis.
Researchers are keen to hear from people with a diagnosis of dementia given before their 65th birthday or primary carers of people who were diagnosed with dementia before the age of 65. Other family members who are affected by young onset dementia are also invited to take part in the online questionnaire.
Professor Jan Oyebode who leads one of the two work-streams of the study from the University of Bradford, said: “Currently there are over 40,000 younger people with dementia in the UK, with many receiving limited support and having difficulty in accessing services that meet their needs. Our study will help identify positive examples of services and support that meet the needs of younger people with dementia and of their families and supporters.
"Our aim is to provide guidance on developing and improving the services and support they receive during and after diagnosis.”
A spokesperson from Young Dementia UK, said “Most people are unfamiliar with the specific needs and issues faced by those with young onset dementia. It is important therefore that your needs are included in projects, policies and campaigns that shape dementia services and it is vital that you are involved in decisions that affect you.”