Young onset dementia

Young onset dementia (YOD) is defined as dementia diagnosed under the age of 65. It is also referred to as ‘early onset’ or ‘working age’ dementia. There are an estimated 42,000 people with young onset dementia in the UK.

As dementia is frequently, and wrongly, thought of as a condition associated with old age, the early symptoms of young onset dementia are not recognised and are attributed to other causes including depression, stress, physical health problems and relationship changes. This can lead to a significant delay (on average four years) in getting an accurate diagnosis, and appropriate post diagnosis support. This can have a negative impact on not just the person’s life but also the whole family. Particular issues faced by younger people with dementia in comparison with older people are:

  • more likely to have a rarer form of dementia affecting behavior and social functioning
  • more likely to have familial dementias
  • family members are more likely to report significantly higher psychological and physical distress
  • employment issues both of the symptomatic person and their partner
  • heavy financial commitments e.g. mortgage, children
  • younger and more dependent family
  • additional caring responsibility for parents

What causes young onset dementia?

There are differences in the types of dementia commonly diagnosed in younger people with dementia compared to those of an older age. Only about 34% of dementias diagnosed in younger people are Alzheimer’s type in comparison to about 60% in the older age group. Frontotemporal dementia is about 12% of the diagnosed cases of young onset dementia compared with just 2% in older people. In addition younger people are more likely to have rarer familial forms of dementia caused by genetic mutations including: familial Alzheimer’s disease, frontotemporal dementia and familial vascular dementia.

It is thought that the same causative factors may be present across the age range for non-familial Alzheimer’s and vascular dementias but the way it presents in the different age ranges can differ.

How does young onset dementia develop?

The early symptoms of young onset dementia can differ depending on the type of dementia and which parts of the brain it affects. Dementias affecting the frontal and temporal lobes of the brain are more common in younger people so it is more likely that the early symptoms may include changes in:

  • personality
  • behaviour
  • social functioning
  • relationships with others
  • activities of everyday living
  • motivation
  • mood e.g. depression, anxiety
  • concentration levels
  • decision making and problem solving

Generally people think dementia is having a poor memory and being older, so the above symptoms in a younger person could be attributed to other life events. In addition the person may not recognise the changes in themselves and so can be resistive to seeking help or support.

Managing the effects of young onset dementia

Families living with the effects of young onset dementia state that they need:

  • early recognition of the signs and symptoms suggestive of dementia
  • accurate and timely diagnosis
  • awareness of their condition, especially from health and social care professionals
  • specialist information at the time of diagnosis
  • identification of a person who specialises in young onset dementia to support the family to work on a support plan to meet the family’s needs
  • counselling and relationship work
  • access to a specialist helpline
  • workplace support
  • age appropriate meaningful occupation and activities
  • peer support groups
  • better communication between agencies

Early recognition and timely accurate diagnosis of dementia, combined with appropriate specialist support, can reduce the distress experienced by the whole family.

Employment and young onset dementia

Our advice on employment and young onset dementia for a person with the condition, and also for people in employment whilst caring for someone with dementia

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Ian and Kelly's story

Ian was diagnosed with dementia in 2013, at the age of 47 – the same year that his and Kelly’s son, Tommy, started primary school. Kelly cared for Ian at home, with the support of their Admiral Nurse, Jody

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Alison's story

Alison’s life changed when her long-term partner, Philip, seemed to become very stressed and confused a lot of the time. He was diagnosed with young onset dementia while he was still in his 50s

Read Alison's story