Improving diagnosis and support services for people with younger onset dementia

Lead Investigator: Dr Janet Carter

Institution: University College London

Grant type: Project

Duration: 36 months

Amount: £270,584

Scientific Title: The Angela Project: Improving diagnosis and post diagnostic support for younger people living with dementia and their caregivers

Why did we fund this project?

Comments from members of our Research Network:

'Having observed a 32 year old with children, struggling with AD, and seeing the paucity of facilities, I give the project top priority.'

'This shows a definite need for this type of research in the UK. It has important aims and is well thought out in identifying a lack of 'right age' services.'

'A badly-needed study, well designed in partnership with the people it is designed to benefit.'

What do we already know?

Dementia is often perceived as a condition that only affects people in their mid-60s and above, but at least 42,000 younger people are also thought to be living with the condition. People affected at a younger age often have rarer forms dementia and can experience unusual symptoms, for example changes in mood, language and ability to empathise. These factors mean that it can take an average of 4 years to receive a diagnosis of younger onset dementia. 

Another problem faced by people with younger onset dementia is that there are not always facilities and services that can provide appropriate support. For example a GP may be unsure how to refer a younger person for a memory assessment, as many that specialise in dementia are tailored towards older people. People with younger onset dementia may also have different needs to older people with the condition. For example, they are more likely to still be in work or have school-age children. 

What does this project involve?

A survey conducted by Dr Carter and her colleagues has found that there are few activities and care services that are suitable for people with younger onset dementia or that are tailored towards their age, needs or particular condition.

Therefore, this project has two aims. One is to improve the clinical diagnosis of younger onset dementia and the other is to improve support for people with the condition after they are diagnosed.

In order to improve diagnosis, the researchers will produce a 'gold standard' set of rules, which will be created through examining the scientific evidence and consulting experts in the field along with people living with younger onset dementia.

The researchers will also interview people with younger onset dementia and their carers to find out what support they have received and to get examples of good care practices. They will also ask care service providers about the opportunities and challenges that come with creating services for this group of people. 

How will this benefit people with dementia?

People with younger onset dementia often have a long wait to receive a diagnosis and there are not always services in place to provide appropriate support. This project will use the experiences of people with the condition to help with the production of much needed guidelines for healthcare professionals to improve diagnosis and support services.