Dementia - young-onset dementia
People who develop young or early onset dementia may have distinct needs and face different challenges. Here you can find resources which discuss some of the issues around young-onset dementia.
In other sections of the website you can also:
- familiarise yourself with the UK national strategies and standards
- develop your skills and knowledge with resources designed for learning
- find details of key agencies and networks.
Resources are arranged under the following headings:
Some of the resources on this page are in PDF format - see how to access PDF files.
Resources and tools
Alzheimer’s Society: Younger people with dementia
Although the symptoms of dementia are similar whatever a person's age, younger people with dementia may have different needs. This section of the Alzheimer’s Society website considers the different needs that a younger person with dementia may have. Resources include regional groups and an online forum.
CANDID (Counselling And Diagnosis In Dementia)
CANDID is a nurse-led information and advice service for younger people with dementia and their families. The CANDID telephone and email service is run by a consultant nurse and clinical nurse specialist and is available to patients and families registered with the NHS Specialist Cognitive Disorders clinic at the National Hospital, London, and associated healthcare professionals.
Dementia Web: Younger people with dementia
This online information resource on dementia focuses on services in Oxfordshire, but also includes a section of valuable resources on general issues arising for younger people with dementia, including available benefits, employment and how to explain dementia to children and friends.
Psychology specialists working with older people: Young onset dementia
This website has a 'special interests’ section on young onset dementia, providing information about the condition, a summary of current service provision and a range of references and other sources of information. The ‘challenging behaviour’ page also has a strong focus on dementia.
SCIE Dementia gateway: Young onset dementia
This section of the Dementia gateway which brings together tools, activities and practical tips includes information on young onset dementia including: key issues; diagnosis and early stages for younger people; services and support for younger people and living with young onset dementia.
Young Dementia UK
This charity provides support for younger people with dementia and their families and friends in Oxfordshire and its borders. The charity publishes a newsletter three times a year.
Younger people with dementia
This is an online forum for young people with dementia and their carers providing information and peer support. It is for younger people with dementia within Wokingham, Reading and West Berkshire but it also provides links to further information and other local and national YPWD related web sites.
Stories and good practice examples
NHS Choices: Early onset dementia
Early onset dementia can affect people before they reach retirement age. In this video an expert explains the value of early diagnosis and planning for the future, and John and his wife Shirley describe how they have adapted their lives since John showed early signs of dementia.
Social Care TV: Living with young onset dementia
This film introduces Ian Grant and Sandy Reed, who were both diagnosed with dementia in their 50’s. They describe their experiences of receiving such a diagnosis at an early age, and the lack of support that often follows.
Social care TV: Rapidly declining early-onset dementia: living at home with nursing supoprt
Jim Swift's account of his wifes experience illustrates the widespread effect of a very rapid deterioration, and explores the sense of loss and loneliness that can be part of the caring role. His account also highlights the need for skilled, experienced support for carers – in this case provided by an Admiral Nurse – together with access to regular breaks from the caring role.
Standards
For relevant standard statements and associated guidance see:
NICE quality standards: Dementia standard
Scottish Government: Standards of care for dementia in Scotland
For overarching resources and resources on other specific aspects of care see Supporting people with dementia.