Diagnosing young-onset dementia

Getting an accurate diagnosis is important but can take longer for a younger person. Read more about being referred to a specialist and genetic testing. 

Getting a young-onset dementia diagnosis

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

  • Young-onset dementia is less common and health professionals may not have much experience of seeing the symptoms in a younger person.
  • Early symptoms can be hard to recognise or not obvious. They might be put down to much more common causes such as stress, difficulties with relationships or work, or the menopause.
  • Younger people are less likely to be memory loss, and are more likely to experience changes in language, vision, behaviour or personality.

Diagnosing a younger person with early symptoms of dementia can be very challenging and even specialists don’t always manage to get it right first time. 

On the whole, diagnoses of dementia tend to become more reliable as symptoms progress and the nature of the condition becomes clearer. An initial diagnosis of something else, such as depression or chronic stress, may need to be looked at again if symptoms evolve and steadily get worse over time. 

If diagnosis is severely delayed, it can mean the person doesn’t get the support they need.

The assessment process

Assessment for possible dementia, including young-onset dementia, usually starts with a visit to the GP (see Assessment process and tests). They will do some quick tests and ask how long the symptoms have been going on for and whether they’ve been causing problems with everyday life. If they think dementia could be a possible cause of these symptoms, they will make a referral to the local memory service. These are specialists in diagnosing dementia.

Some areas have specialist services for diagnosing younger people with dementia. The GP should refer a person to this service if it is available locally.

The assessment process often includes:

  • Taking a full history of the person’s symptoms, any changes they’ve experienced and the impact of these on day-to-day activities.
  • Tests of a person’s 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.

The process might sometimes include a lumbar puncture, to collect and analyse fluid around the spine.

Why do I need a diagnosis?

A diagnosis may rule out any other conditions. It will also help you plan for the future. Find out more about getting an assessment.

Assessment and diagnosis

Coping with diagnosis

If you’ve had a diagnosis of young-onset dementia, you might be feeling a range of emotions, especially if the news is recent. Some people can feel numb, while others may experience denial. There’s no right or wrong way to feel.  

Coming to terms with a dementia diagnosis can take time. But there are some things you can do now to help.  

Telling people about your diagnosis

After your diagnosis, you may not be sure who to tell. It is natural to wonder how people will react. Some people may be supportive and understanding. Others may be confused or worried, or uncertain of what to say or do. For some, it can take a while for it to sink in.  

Remember that you don’t have to talk about everything at once or feel responsible for managing other people’s reactions.  

Some people might not know much about dementia. They might find it helpful to read about it, or watch the Dementia Friends video.