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Background to the study

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.

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 about the ANGELA Project, please visit our website at http://www.ucl.ac.uk/psychiatry/the-angela-project

Angela Research Team

Overview of implementation

The ANGELA Project started on the 1st of December 2016 and will last for three years. We have acquired approval from the Health Research Authority and began recruitment to the study on the 16th of August 2017. The study is taking place at a national level in England and includes 15 key NHS sites in the North, Midlands, and South of the country.

The following activities will take place during the study:

Work-stream 1

• Two Delphi studies carried out by work-stream 1:

  • The first one is called Delphi-PRO and includes international and national experts. Delphi-PRO will develop quality indicators that will highlight all the elements that clinicians should take into account to deliver an accurate diagnosis.
  • The second one is called Delphi-EXP and includes younger people with dementia and supporters. Delphi-EXP will seek a consensus on the best way to carry out and deliver a diagnosis from the users’ perspective.

• A case note audit will be conducted to see if current clinical practice in the UK meets the quality indicators for a diagnosis which have  been identified during the two Delphi studies.

• Best practice guidelines and clinical recommendations for young onset dementia diagnosis will be developed from January 2019 to June 2019.

Work-stream 2

Work-stream 2 involves four different stages as follows:

  • Stage 1: This stage includes a national survey called the Improving Support and Service Use Survey which seeks to identify positive examples of services and support after diagnosis and the needs they meet. It also gathers information on services used, costs and satisfaction with care.  Focus groups with participants who may be less likely to take part in the survey, such as those attending groups organised by BME communities or younger people with dementia who live alone and may not have access to others who can help them to complete the survey.
  • Stage 2: Follow-up interviews will take place with younger people with dementia and supporters who have completed the survey, to gain an in-depth understanding of positive experiences of services and support and the needs they meet.
  • Stage 3: Interviews will be conducted with service providers and commissioners across the country, to identify what helps and what prevents them from providing and commissioning positive care and support that meet the needs of younger people with dementia and their families/supporters.
  • Stage 4: Best practice guidelines on post-diagnostic support for people with young onset dementia and their supporters will be developed from June 2019 to September 2019.

To maximise the impact of the study, the findings of the ANGELA Project will be disseminated from October 2019 to December 2019 to a wide audience that will include health and social care professionals, service providers and commissioners, members of the wider young onset dementia community, and the general public.

Updates on the project

So far, we have:

  • Finalised our research design and successfully completed the process for obtaining ethics approval for the study.
  • Finalised our data collection tools after consulting younger people with dementia and supporters and piloting the tools.
  • Set up our NHS sites for the study.
  • Conducted the Improving Support and Service Use Survey which aims to improve the services and support for younger people with dementia and their family members/supporters after diagnosis. The survey has been open for a year and is now closed after gathering the responses of 264 participants.
  • Carried out focus groups with younger people with dementia to identify positive examples of services and support and the needs they meet.
  • Conducted follow-up interviews with younger people with dementia and their family members/supporters to acquire an in-depth understanding of positive experiences of support and the needs they meet.
  • Carried out the Delphi-PRO with international and national experts to develop quality indicators that will highlight all the important elements that clinicians should take into account when delivering a diagnosis for young onset dementia.
  • Completed the Delphi-EXP with younger people with dementia and their supporters to determine the best way to carry out and deliver a diagnosis from the service users’ perspective.
  • Launched the case note audit.
  • Started the interviews with service providers and commissioners.

Key study dates and events for the future:

  • Development of best practice guidelines for young onset dementia diagnosis - Expected to begin in April 2019.
  • Development of best practice guidelines on post-diagnostic support for younger people with dementia and their families/supporters - Expected to begin in June 2019.
  • Dissemination of findings - Expected to begin in October 2019.

 

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.

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How to 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 
Tel.: 01604 892168
Email: Mary.O'Malley@northampton.ac.uk

For any questions related to work-stream 2 of the ANGELA Project please contact:
Vasileios Stamou, Research Assistant
Tel.: 01274 233 994, Mob.: 07876 790 462
Email: V.Stamou@bradford.ac.uk

or

Jenny La Fontaine, Research fellow
Email: J.Lafontaine@bradford.ac.uk

For more information about the ANGELA Project, please visit our website at http://www.ucl.ac.uk/psychiatry/the-angela-project