What is Young Onset Dementia?

Written by Active Minds on Wednesday the 7th of March 2018.


Young onset dementia is defined by the age at which someone develops the disease, with people younger than 65 being classed as young onset dementia patients. However, this age is merely a marker, and bears no biological significance. It essentially means a person has developed the disease prior to retirement, thus being termed as ‘young onset dementia’, or occasionally ‘working-age dementia’.

Young onset dementia makes up 5% of dementia cases in the UK, roughly 42,000 people, and whilst the disease is essentially the equivalent of dementia in older people, there are some notable differences. For example, young onset dementia is more likely to be hereditary, with about 10% of cases inherited from parents. Similarly, a younger person is more likely to develop a rarer form of dementia than an older person who is living with the disease.


What are the causes of young onset dementia?

As with late onset dementia, the causes for the disease are similar, though they may progress at different rates and cause different symptoms, e.g. balance, co-ordination and movement are much more likely to be affected in young onset dementia.

Alzheimer’s – This is the most common type of dementia in younger people, affecting roughly 30 to 35% of young onset cases. Interestingly, younger people are more likely to develop more unusual forms of the disease in which memory loss is not so prominent, but issues with vision, speech and behaviour are affected first.

Vascular Dementia – Vascular dementia is the second most common form of dementia in young people, and can develop when issues with the blood supply to the brain occur.

Frontotemporal Dementia – Around 10-15% of younger people with dementia may develop frontotemporal dementia, which is significantly higher than in older people. In fact, frontotemporal dementia is generally diagnosed between 45 and 65.

This type of dementia is caused by damage to the lobes at the front and sides of the brain. There are 3 different types of frontotemporal dementia, one which causes a change in personality and the other 2 which cause issues with language.

Dementia with Lewy bodies – This disease occurs when protein builds up on the brain and causes people to develop issues with alertness, as well as experiencing hallucinations and problems with movement e.g. stiffness and trembling limbs. Dementia with Lewy bodies accounts for about 5% of young onset dementia cases.

Alcohol-related brain damage – Damage to the brain caused by regular and excessive consummation of alcohol can cause alcohol-related dementia. This is due to the damage alcohol can have the on the brain, including a lack of thiamine, damage to nerve cells, poor diet, as well as head injuries due to falls through excessive drinking. Alcohol-related brain damage generally occurs in people in the their 50’s.


Living with young onset dementia

People who are diagnosed with young onset dementia face a different set of challenges to someone who has been diagnosed later in life. Firstly, their set of symptoms may be very different to someone with later onset dementia. For example, whilst memory loss is one of the core symptoms of dementia in older people, for a younger person, they can experience issues with behaviour, vision and speech.

They may also receive their diagnosis during a different part of their life, perhaps whilst they are still working, paying a mortgage or have dependent children living with them. This means that discussions need to be had to work out what is best for them and their family. For example, they may want to continue to work for as long as possible, or perhaps taking early retirement feels like the better option. Similarly, their family need to decide what is best for them, and what adjustments they may have to make in order to ensure they, and their loved one, are as prepared as possible.

There are a number of organisations available for anyone who has been diagnosed with young onset dementia, including Young Dementia UK, who can help guide and support from initial diagnosis onwards.