Young onset dementia refers to any type of dementia that is diagnosed before the age of 65. Currently, there are more than 42,000 people living with young onset dementia in the UK. Young onset dementia often involves rarer types of dementia which are more difficult to diagnose. Moreover, people diagnosed before the age of 65 have different needs from older people as they may still be working, have financial commitments, or care for their offspring or ageing parents. Despite the increased attention this group has been receiving during the recent decades, people diagnosed with young onset dementia and their families still face significant difficulties with gaining access to support that meets their needs.
Prior research studies have looked into the services available to younger people with dementia to determine whether they are appropriate to their age and their needs. Most of these studies have highlighted important gaps in care and a lack of specialised services. The research literature is full of reports which focus on how services in the UK fall well short of delivering appropriate support. As a result, the academic community, the public and families affected by young onset dementia may feel discouraged, as it appears there are no good services for younger people with dementia. But does this reflect the whole picture about what is really going on in the support offered to younger people with dementia and their families? Is everything so bad across the UK?
Most of the past research studies have taken a problem-focused approach, have exposed negative experiences and have highlighted needs that are not well met by services. Models of good practice put forward as a result of these studies are aimed at correcting short-comings and shortfalls. These do not include complete guidance about the full range of needs of younger people with dementia and the types of interventions that can meet these needs. This is not a surprise as such guidance needs to be informed by real-life positive examples of support that reflect the needs met for younger people with dementia and their families. This important gap in research gave birth to the ANGELA Project.
The ANGELA Project is a national study which began in December 2016 and aims to improve diagnosis and post-diagnostic support for younger people with dementia and their families. It is dedicated to Angela, a lady with young onset dementia who went undiagnosed for 3 years before her symptoms were recognised.
The ANGELA Project is composed of two work-streams:
- Work-stream 1 focuses on improving the clinical accuracy of young onset dementia diagnosis and is led by University College London (UCL) and the University of Northampton.
- Work-stream 2 focuses on improving services and support after diagnosis. It is led by Professor Jan Oyebode who is working with Dr Jenny La Fontaine and Dr Vasileios Stamou from the University of Bradford, and Professor Heather Gage and Dr Bridget Jones from the University of Surrey. The objective of work-stream 2 is to provide guidance on best practice to those who deliver post-diagnostic services for young onset dementia.
A national survey and group discussions with younger people with dementia have taken place over the last 12 months, to gather information on positive experiences of support after diagnosis across the UK. We have received responses from 285 participants and we have gathered more than 800 examples of positive experiences of support and services. Based on these examples, we have identified the important needs of younger people with dementia and their families after diagnosis and how these can be met by different types of interventions. We are currently conducting follow-up interviews with survey respondents to find out more about the needs which were met during their positive experiences with services. This will inform the creation of guidance on best practice. We also plan to conduct interviews with key individuals who are in charge of delivering services across the UK to find out more about what stops and what helps them to provide support that meets the needs of younger people with dementia and their families.
Despite the current gaps in services across the country, our preliminary findings reveal that not every service is falling short when it comes to providing support for younger people with dementia and their families. Some professionals and services are actually doing it really well! We plan to combine all our findings together to develop guidance on best practice which will enable service providers and commissioners to deliver support that meets the needs of those affected by young onset dementia. This guidance will include practical examples of services that illustrate the full range of needs across the experience of young onset dementia and how these needs can be met.
Written by: Dr Vasileios Stamou, Research Assistant, Centre for Applied Dementia Studies, University of Bradford