Young onset dementia: Symptoms and diagnosis

Last Updated: October 3, 2024

Beth Britton explores dementia in people under 65 and speaks to Dementia UK Admiral Nurse Jules Knight for advice on the signs of dementia in younger people and what to do if you notice them.

Despite an estimated 70,800 people currently living with young onset dementia, dementia is still largely considered to be something that only affects older people. Whilst younger people are in the minority (7.5% of all people with dementia have young onset), the fact that 19,000 in England alone are estimated to be living with young onset dementia without a diagnosis or support points to how difficult it can be to have young onset dementia formally recognised or access specialist post-diagnosis support.

To address these issues, Dementia UK have called on the new government to introduce a national framework for young onset dementia to establish timely and accurate diagnoses, age-appropriate and immediate post-diagnostic support, and coordinated care plans.

I spoke to Jules Knight, Consultant Admiral Nurse for Young Onset Dementia at Dementia UK, to find out more about the challenges around diagnosis and post-diagnostic support when you’re under 65 and experiencing dementia symptoms.

Interview with Jules Knight – Part One

Jules: “We know that it takes much longer for someone under 65 to be diagnosed with dementia, on average twice as long compared to a person over the age of 65. There are many challenges people with young onset dementia face when seeking a diagnosis and this is largely due to the lack of awareness around the condition. Unlike late onset dementia, young onset dementia can present quite differently with memory problems not being the primary symptom.

Initial symptoms can include behavioural and personality changes, social withdrawal, difficulties with planning and judgement making, visual and perceptual changes, and changes in communication and language abilities. The wide range of symptoms, together with low expectations that dementia might be the underlying cause, means that young onset dementia is often diagnosed as depression, stress, menopause, or attributed to other physical health problems or relationship changes. It’s very important to consider these other conditions and rule them out, but this often takes a long period of time and follow up and continuity with the GP can be difficult.

The Young Dementia Network has a leaflet specifically for GP Surgeries to help patients recognise young onset dementia symptoms, and urges anyone with concerns to speak to their GP.

The theme for World Alzheimer’s Month 2024 is stigma and attitudes to dementia. How much of a role do you think stigma and attitudes to dementia influence the delays in younger people being diagnosed?

Jules: “There is a general lack of awareness and understanding that dementia can affect younger people, and this lack of awareness extends to health and social care professionals too. Dementia may be last on the list of conditions that a GP considers, but it is really important that it is on the list of possibilities, that they understand the differences and the impact that it can have, and they really listen to the concern expressed by the younger person, as pre-diagnosis can be a very chaotic time for the person and their family.

Once diagnosed, the person living with young onset dementia and their family can struggle to access post-diagnostic support, so they are denied the opportunity to have support that can help them plan for the future and live well with their dementia. It’s important that the whole family is considered, as often the parents and children of the person with dementia find themselves in caring roles. They need support to understand changing relationships and how to manage different symptoms to what you would see in an older person with dementia.

Accessing age-appropriate support services is very challenging. For example, most families have real difficulty finding a suitable care home. The majority of care homes cater for older people, and the environment and skill set of the staff may not meet the often very complex needs of the person living with young onset dementia.

What should a person who is under 65 and with potential symptoms of young onset dementia expect to experience in the diagnostic process?

Jules: If someone is concerned that they may have young onset dementia, it’s important that they make a GP appointment to discuss their concerns. In preparation for this, it’s helpful to keep a note of the changes and symptoms they’re experiencing. The Young Dementia Network have developed a personal checklist to help with this. The person may also want to take a friend or family member with them who can detail the symptoms they have seen and how these have changed over time. It is important to share any family history of dementia, particularly young onset dementia, too.

The GP will initially investigate and treat other possible causes; so, they will likely ask about whether there are any relationship or work issues affecting the person, and whether they are experiencing anxiety, stress or depression as these conditions can present in a similar way to dementia.

The GP should organise for the person to have blood tests to rule out any physical health conditions that have similar symptoms to dementia, such as underactive thyroid and certain vitamin deficiencies. For women, they should also discuss perimenopause and menopause as again symptoms can present in a very similar way.

The GP may complete a brief memory and cognitive test at this stage, but it’s likely not to raise any concerns because as mentioned previously memory is not a primary concern.

It is important for the person to follow this process with the GP and treat other conditions that can be treated. Once other conditions are treated or ruled out, the person should then be referred onto specialist assessment and diagnostic services. This could be a local Memory Service, but is usually a regional Neurology Service.

The Neurology Service will complete a more detailed assessment, including further cognitive testing, arranging specialist brain scans, and potentially other tests, and this may take place over a period of months, with a diagnosis taking up to a year or more in some cases.”

Look out for Part Two of my interview with Jules where we talk about the day-to-day and lifestyle factors that make developing dementia as a younger person uniquely difficult, and Jules gives her top tips for what to do after a diagnosis.

Further support

If you would like to speak to an Admiral Nurse, call Dementia UK’s Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org.

You can also book a free video or phone appointment to get expert dementia support from an Admiral Nurse. Find out more on the Dementia UK website

Young onset dementia – key facts

People with young onset dementia wait on average twice as long for a diagnosis.
Symptoms and a lack of understanding can lead to challenges getting a diagnosis.
Young onset dementia is often misdiagnosed as stress, menopause, and depression.
Unlike other forms of dementia, memory problems are often not a primary symptom.
Common initial symptoms of young onset dementia include:

Behavioural and personality changes
Social withdrawal
Difficulties with planning and judgement making
Visual and perceptual changes
Changes in communication and language abilities

Your first port of call if you suspect young onset dementia is to book an appointment with your GP. Keep a note of the changes and symptoms you are experiencing, and make sure to share any family history of dementia.
The process with the GP will include:

Investigation to rule out other possible causes
Blood tests to rule out physical health conditions like underactive thyroid, vitamin deficiencies, which appear similar to dementia

Once other conditions are treated or ruled out, you should be referred to a Neurology Service for specialist assessment, including cognitive testing, brain scans and more.

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