Young onset dementia

There are around 900,000 people in the UK living with dementia, and the likelihood of developing dementia increases significantly with age. When a person develops dementia before the age of 65, this is known as ‘young-onset dementia’. Over 42,000 people in the UK are living with young-onset dementia.

Like all people with dementia, younger people may experience a wide range of symptoms, especially in the early stages of dementia. However, they are likely to need different support from older people.

People whose symptoms started when they were under the age of 65 are often known as ‘younger people with dementia’ or as having young-onset dementia. This is not for a biological reason but is based on the fact that 65 was the usual age of retirement for many people. People sometimes use the terms ‘early-onset dementia’ or ‘working-age dementia’. This information uses the term ‘young-onset dementia’.

Dementia is caused by a wide range of different diseases. This is similar for younger and older people (‘late-onset dementia’), but there are important differences in how dementia affects younger people. These include the following:

• a wider range of diseases cause young-onset dementia
• a younger person is much more likely to have a rarer form of dementia
• younger people with dementia are less likely to have memory loss as one of their first symptoms
• young-onset dementia is more likely to cause problems with movement, walking, co-ordination or balance
• young-onset dementia is more likely to be inherited (passed on through genes) – this affects up to 10% of younger people with dementia
• many younger people with dementia don’t have any other serious or long-term health conditions

Someone who is diagnosed under the age of 65 needs to adjust to living with a long-term condition as a younger person. They might be concerned about the effects this will have on their family, relationships, finances and daily life. They may also be worried that any children or siblings will have a higher risk of developing dementia.

Whilst getting an accurate and timely diagnosis of dementia is important, for younger people it can often take much longer. There can be specific reasons for this, including:

• young-onset dementia is relatively rare and health professionals may not have much experience of associating the symptoms in a younger person
• early symptoms can be hard to recognise or not obvious. They might be put down to other factors such as stress, difficulties with relationships or work, or the menopause
• this may be because early symptoms are less likely to be memory loss, and are more likely to be changes in behaviour, language, vision or personality

If the younger person with dementia or other people dismiss early and mild symptoms or blame them on other causes, this can mean the person doesn’t get the support they need. It’s often only after someone receives a diagnosis that they and those around them can look back and notice when things first started to change.

For more information contact the Buckinghamshire's Dementia Support Service.