Young-onset dementia - what you need to know

What is young-onset dementia?

Although dementia can occur at any age, young-onset dementia generally refers to cases that develop between the ages of 45 and 65. This is earlier than the age at which your chance of dementia begins to increase, which is currently 65.

More than 70,000 people in the UK are living with young-onset dementia. Suzanne Mumford, Director of Clinical and Dementia Care at KYN, says that around 7% of people with dementia are under 65.

“Young-onset dementia is often diagnosed late as doctors are not looking for dementia,” she explains. “It can take many years to get a diagnosis.

“The diagnosis is usually through a review of medical history, blood tests - to rule out other conditions - memory and thinking tests, a magnetic resonance imaging (MRI) scan, or a lumbar puncture.”

She notes that an early referral to a memory clinic and neurologist is often the most reliable route to a diagnosis.

Suzanne Mumford

What are the early signs of young-onset dementia?

Dementia isn’t a single condition in itself. It’s an umbrella term for a range of diseases that affect the brain - each with its own characteristics and symptoms.

This means the signs and symptoms aren’t one-size-fits-all and can vary depending on the type of dementia a person has.

However, Mumford highlights some of the most common symptoms:

• Confusion.

• Thinking difficulties - such as forming thoughts or processing information.

• Problems with language, movement, or vision.

• Mood changes.

“The symptoms are similar,” she says. “But the impact can be more profound as this group of people are often still working, may have financial commitments, and often have children either still at home or starting out in their careers.”

What types of young-onset dementia are there?

Some forms of young-onset dementia can run in families, with around one in 10 cases thought to be inherited directly from a parent.

Lifestyle factors may also play a role in the development of dementia, depending on the type.

Mumford outlines the two main types:

• Young-onset Alzheimer’s dementia - caused by a build-up of proteins in the brain that clump together and damage or destroy nerve cells. Symptoms can include difficulty processing information, finding words, and remembering recent events, as well as issues with sequencing tasks and fine motor skills.

• Young-onset vascular dementia - develops when damage to the brain’s blood vessels reduces blood flow to affected areas. It is often associated with conditions and lifestyle factors such as diabetes, obesity, and heart disease.

“As with late-onset dementia, people can have a mixture of young-onset Alzheimer's and vascular dementia,” says Mumford.

How is young-onset dementia treated?

Once a person develops young-onset dementia, there is currently no cure or way to reverse the condition. Treatment instead focuses on managing symptoms and helping the person maintain the best possible quality of life.

Mumford explains that certain medicines can help ease symptoms and, in some cases, slow their progression.

“These include treatments such as donepezil, memantine, galantamine, and rivastigmine,” she says. “There are also some newer medications that have very restricted eligibility criteria that can help to break down the protein plaques that contribute to the damage caused by Alzheimer's disease. These are not currently available on the NHS.”

Can young-onset dementia be prevented?

Though there’s no cure for dementia, evidence suggests that making changes to certain lifestyle factors could help reduce your chance of developing the condition. This includes some forms that affect people under 65.

Mumford says key lifestyle changes include:

• Keeping active - aim for at least 150 minutes of moderate exercise each week to support your heart and brain health.

• Look after your heart - keep your blood pressure, cholesterol, blood sugar, and weight within a healthy range, avoid smoking, and limit your alcohol intake.

• Stay mentally and socially active - keep learning, challenge your brain, maintain social connections, and look after your mental health.

• Protect your senses and your head - treat hearing and vision issues, and reduce your chance of head injuries by using seatbelts, helmets, and appropriate protective equipment.

• Limit environmental hazards - where possible, reduce long-term exposure to air pollution, which has been linked to a higher chance of dementia.