Young-onset dementia: Symptoms of dementia in people aged under 65

Young-onset dementia, also called early-onset dementia or working-age dementia, is a term used for when somebody develops dementia before the age of 65.

Dementia is rare in younger people, but can occur in middle age or occasionally even younger, such as this man who was diagnosed aged 23.

Young-onset dementia statistics

According to Young Dementia UK, around 42,000 people in the UK live with young onset dementia, accounting for around 5% of dementia cases, but this could figure could be as high as 9% as many go undiagnosed or misdiagnosed. Less than 1% of these cases are in people aged under 60. Interestingly, there is little disparity between genders in numbers of people with young-onset dementia, but this changes after the age of 65, when more women have the condition than men. 

This number is significantly higher in people with learning disabilities, particularly Down’s Syndrome.  People with Down’s Syndrome make up the largest demographic of people with dementia under the age of 50. 

Signs of young-onset dementia

Young-onset dementia is not a condition in itself, but people who develop a type of dementia at a younger age often experience different symptoms to somebody over 65 with the same illness.

Symptoms include:

• Agitation is very common
• Aggression, both physical and verbal, is often a symptom in earlier stages
• Around half of people with young-onset dementia experience apathy, particularly if the dementia has been brought on by alcohol
• Issues with motor-neurone abilities. They may start to be clumsy or fall over.
• Younger people are less likely to be show symptoms usually associated with early dementia, such as problems with memory and confusion. Cognitive issues are more likely to develop later on

Types of dementia more common in younger people

Any type of dementia can be experienced under the age of 65, but some are more common. These include:

Alzheimer’s disease

1 in 3 cases of dementia in the UK are Alzheimer’s disease, which is caused by the build of proteins in the brain. It is not clear why this happens to some people and not others, or why it happens in younger people.

Frontotemporal dementia

When dementia occurs in the frontal and temporal lobes, those parts of the brain cannot function properly, so symptoms reflect those lobes’ responsibilities. People can experience significant changes to their personality, emotions, communication and even movement.

Vascular dementia

This type of dementia is caused by lack of blood flow to the brain. Blood flow can be inhibited by conditions that usually occur in older people, such as strokes, but also by lifestyle factors that affect people of all ages, including smoking, lack of exercise and obesity.

Korsakoff’s Syndrome

This is usually caused by alcohol dependency, but can also be an effect of anorexia or prolonged malnutrition, as both can result in severe thiamine deficiency. Both alcoholism and eating disorders are more prevalent in younger people, but they can happen at any age.

Dementia with Lewy Bodies

Caused by the presence of Lewy bodies in the brain, which can also cause Parkinson’s disease.

Living with young onset dementia

A diagnosis of dementia can be particularly devastating for younger people. As well as the reduced life expectancy, they may still be working or raising a family.

Wendy Mitchell, who was diagnosed with dementia at the age of 58, said: “People assumed because I had been diagnosed with dementia, I had immediately jumped to the late stage of dementia. Dementia is such a vast spectrum. Some days I have bad brain fog but I know if today is bad then tomorrow will be better.”

Read Wendy Mitchell’s story.

You can also read Tommy Dunne’s story who was diagnosed with early-onset dementia at the age of 58.

If you are diagnosed with young-onset dementia, you’ll need to ensure you take necessary steps to plan for life with dementia.

These include:

• Understanding your rights at work
• If you drive, declaring your condition to the DVLA or DVA
• Appointing a Lasting Power of Attorney, or two to cover your health and finances
• Exploring therapies that can help with symptoms of dementia
• Deciding who will look after your children if you become unable to do so
• Support with caring for pets
• Finding out if you are eligible for any financial support, such as Personal Independence Payment or Universal Credit
• Making a will

One of the most essential things to look into is what support you could receive and, for later down the line, planning your care.

• Do you want to receive home care or move into a care home?
• If it becomes necessary for you to live in residential care if your needs change, which care home would you like to live in?
• How will you fund your care?
• What would you like to be included in your care plan?

Young-onset dementia services UK

Younger People with Dementia

Tel: 0118 207 2880

Email: contact@ypwd@info

Young Dementia UK

Fill in their advice form here