Dementia and memory loss

When a person develops dementia before the age of 65, this is known as ‘young-onset dementia’. People sometimes use the terms ‘early-onset dementia’ or ‘working-age 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.

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, coordination, 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

Getting an accurate and timely diagnosis is important. However, 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.

Similarly to general diagnosis of any type of dementia, young onset dementia diagnosis usually starts with your GP, but due to the range of potential causes of young onset dementia, more comprehensive assessment and testing may be required.

The assessment process often includes:

• taking a full history of your symptoms, any changes you have experienced and the impact of these on day-to-day activities
• tests of your mental abilities, behaviour and ability to do daily tasks
• a full physical exam
• at least one brain scan (often with more specialist scans)
• looking at other health conditions and how these can be managed effectively