The Angela Project
Overview
Dementia is considered to be young onset when it occurs in people before they reach their 65th birthday. It is estimated that more than 42,000 people have young onset dementia in the UK today. This number is expected to increase by 20% over the next forty years.
Younger people with dementia are often affected by rarer types of dementia that present different symptoms. For instance, they may:
- Experience changes in mood or behaviour which others might find difficult to understand
- Have a diagnosis of Alzheimer’s disease but their symptoms are often different from the way it is experienced by older people
- Experience significant difficulties with communication and language or with visually perceiving their environment, in the absence of other symptoms commonly associated with dementia such as memory loss.
However, many health care professionals may not be aware that dementia can occur in younger people and may not recognise unusual symptoms. As a result, the symptoms are not sufficiently investigated and are often misdiagnosed as depression or anxiety, leading to further delays in diagnosis and getting the help needed.
People with young onset dementia and their families have specific needs, which require suitable services and support after receiving a diagnosis. For example, younger people with dementia may prefer to remain physically active or may wish to continue working.
They may also have important financial commitments or need to care for their children and ageing parents. However, most of the services and support currently available for younger people with dementia and their families / supporters are delivered by services that predominantly care for older people. This can mean that they are unable to meet the individual needs of the younger person and their family.
Aims
The ANGELA Project aims to improve diagnosis and post-diagnostic support for younger people with dementia and their families/supporters and comprises the following two work-streams:
- Work-stream 1, which aims to provide guidance for accurate diagnosis. The objective of this work-stream is to develop a diagnostic guide for health professionals and clinicians. This guidance will also address how the process of receiving a diagnosis is experienced by younger people with dementia and their supporters.
- Work-stream 2, which seeks to provide guidance for improving the services and support offered after diagnosis. The objective of this work-stream is to offer service providers and commissioners examples of best practice and the needs they meet across the care pathway. Thus, this will support them in improving the post-diagnostic care and support offered to younger people with dementia and their families/supporters.
For more information, see the ANGELA Project website.
Publications
- Stamou, V., La Fontaine, J., Gage, H., Jones, B., Williams, P., O'Malley, M., ... & Oyebode, J. (2020). Services for people with young onset dementia: The ‘Angela’project national UK survey of service use and satisfaction. International journal of geriatric psychiatry.
- O’Malley, M., Parkes, J., Campbell, J., Stamou, V., LaFontaine, J., Oyebode, J. R., & Carter, J. (2020). Receiving a diagnosis of young onset dementia: Evidence-based statements to inform best practice. Dementia, 1471301220969269.
- O'Malley, M., Parkes, J., Stamou, V., LaFontaine, J., Oyebode, J., & Carter (2020) International consensus on quality indicators for comprehensive assessment of dementia in young adults using a modified e-Delphi approach. International Journal of Geriatric Psychiatry. 25th June 2020, E-pub ahead of print.
- Stamou, V., Fontaine, J. L., O’Malley, M., Jones, B., Gage, H., Parkes, J., ... & Oyebode, J. (2020). The nature of positive post-diagnostic support as experienced by people with young onset dementia. Aging & Mental Health, 1-9.
- Good Practice in Young Onset Dementia - Improving diagnosis and support for younger people with dementia. View the high level summary of the Good Practice in Young Onset Dementia project.
- Young Onset Dementia Care: Eight key needs of people with young onset dementia and family members. View videos of people living with young onset dementia and family carers.
Project Team
The project was led by Dr Janet Carter, University College London who also led workstream 1 with Professor Jackie Parkes, University of Northampton.
Jan Oyebode, Professor of Dementia Care, Centre for Applied Dementia Studies led workstream 2 on post-diagnostic support.
The project researchers at University of Bradford were Dr Jenny LaFontaine and Dr Vasileios Stamou.
Patient and public involvement
The ANGELA project has grown directly from previous consultations we have had with younger people with dementia and their families and supporters. Additionally, a Patient and Public Involvement reference group has been established specifically for the duration of the project. The PPI group includes people with young onset dementia and family members and supporters. These ‘Experts by Experience’ have been working closely with us to ensure that we use research methods that suit younger people with dementia and will produce useful outcomes.
A Project Steering Committee that includes academic experts in the field of dementia research and younger people with dementia and their supporters, has also been established to provide oversight of the project and act as a ‘critical friend’ in regard to how we do the research and how we ensure it makes a difference. This committee meets regularly throughout the project and reports to the project committee to ensure that all aspects of the study are informed by the ‘voices’ of those who live with young onset dementia and their supporters.
Project team
Contact us
We would welcome enquiries if you would like to find out more about the ANGELA Project. Please feel free to send us an email, call or send a text message and we will respond immediately.
For any questions related to work-stream 1 of the ANGELA Project please contact:
Mary O’Malley
Research Assistant
Mary.O'[email protected]
For any questions related to work-stream 2 of the ANGELA Project please contact:
Vasileios Stamou
Research Assistant
[email protected]
Jenny La Fontaine
Research fellow
[email protected]
For more information, visit the ANGELA Project website.