Diagnosing dementia early is important. You will be able to get the right help, treatments, support and plan for the future. You will also be able to take part in research studies if you’d like to. 

You should speak to your doctor about your concerns as soon as possible. In some cases, it can be helpful to bring somebody that knows you well along to your appointment for support.  

The doctor will: 

  • ask about your symptoms and medical history and may give you a physical check-up.
  • ask you to do some memory and thinking tests. 
  • run blood tests, which may help the doctor to rule out other common causes for your symptoms like thyroid disorders or vitamin deficiencies.
  • make a referral to a memory clinic or specialist doctor such as a neurologist for further tests.   

A memory clinic or specialist may carry out:

  • a brain scan to look for changes in the structure of your brain or to rule out other causes of your symptoms.  
  • in depth memory and thinking tests. 
  • a lumbar puncture which can help to detect “markers” of some of the diseases that cause dementia in a sample of your spinal fluid.  
  • genetic counselling if there is a strong family history of young onset dementia.  

People who experience dementia symptoms at a younger age can often struggle to get a diagnosis or referrals, and the process can take longer than it does for someone over the age of 65. This is in part because young onset dementia is less common and often causes symptoms that may not typically be associated with dementia.  

Imran Sherwani

Eventually, after my symptoms put a lot of strain on me, I went to the doctor. That led to a three-year journey of tests and brain scans until I was eventually diagnosed with Alzheimer’s disease.

- Imran, who lives with young onset Alzheimer's

Some doctors may not recognise dementia symptoms in younger people and put the concerns down to other common conditions like stress, depression or menopause.

It is a good idea to keep a diary of your symptoms and how they affect your everyday life, as this can be helpful to show doctors when you have appointments.

The Young Dementia Network produce a ‘personal checklist’ and other resources that can aid discussions with your doctor about symptoms.

However, because it can be challenging to diagnose young onset dementia, you may need to visit the doctor more than once.  If you are worried about your health, you have the right to an accurate diagnosis. Sometimes doctors have different specialities and requesting a second opinion with a different doctor can be helpful.  

You can also contact Dementia UK’s Admiral Nurses, who are dementia specialist nurses on 0800 888 6678 or helpline@dementiauk.org. They can advise people that are struggling to get a diagnosis.

Young onset dementia

This booklet aims to give an introduction to young onset dementia. It’s for anyone who might be worried about themselves or somebody else.

YOD
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This information was updated in March 2024 and is due to be reviewed in March 2026. It was written by Alzheimer’s Research UK’s Information Services team with input from the Young Dementia Network and lay and expert reviewers. Please get in touch if you’d like a version with references or in a different format.

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Do you have further questions about dementia? Want to know more dementia  research or how to take part in studies?

Contact the Dementia Research Infoline,

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0300 111 5 111

infoline@alzheimersresearchuk.org