What is Young Onset Dementia?

Young Onset Dementia affects people from all walks of life. Dementia is ‘young onset’ when it affects people of working age, usually between 30 and 65 years old. It is also referred to as ‘early onset’ or ‘working-age’ dementia.

An estimated 7.5% or 70,800 of the estimated 944,000 people living with dementia in the UK are living with young onset dementia where symptoms occurred under the age of 65 (Dementia UK).

Dementia is a progressive condition. This means that the symptoms will gradually get worse overtime. How fast the dementia progresses will depend upon the individual and on the type of dementia.

Each person is unique and will experience dementia in their own way.

The way people experience dementia will depend upon a number of different factors including physical make up, personality style, coping mechanisms and the support that they receive from others.

There are a number of common types of Young Onset Dementia that you can read about in the dropdowns below:

Alzheimer’s disease

This is the most common type of dementia, affecting more than 33% of all those with a diagnosis. It is caused by the formation of protein ‘plaques’ and ‘tangles’ in the brain which lead to nerve cell damage.

Most dementias, and especially Alzheimer’s disease, progress slowly.

The most common feature of Alzheimer’s disease is impaired memory. People with Alzheimer’s find it very difficult to learn new information and to remember it even over short spaces of time. In the early stages people may still have very good memory for events that happened a long time ago. Alzheimer’s can also affect attention, concentration and thinking and reasoning. There may also be problems with wordfinding and visual perception. Often, people with Alzheimer’s may not be as aware of their difficulties as others who know them well. Low mood, anxiety and dislike of new situations are also common features.

Alzheimer’s disease usually progresses at a slow pace and people can live for many years following a diagnosis.

Vascular Dementia

Vascular dementia accounts for about 20% of dementia cases. It can be caused by poor blood circulation
in the brain (meaning that the cells do not receive enough oxygen), or bleeding in the brain. It can also occur as a result of a major stroke, or a series of strokes. People with a history of high blood pressure, high cholesterol, diabetes, or heart problems are at increased risk of developing vascular dementia.

People with vascular dementia can experience changeable symptoms. They may be relatively stable for a period of time before showing a sudden deterioration that then stabilises.
Symptoms of vascular dementia will vary, depending on the parts of the brain that are affected.

Poor memory is likely to be a key feature. People with vascular dementia may be able to learn new information, but they have significant difficulty with retrieving information from memory. Often giving clues or hints can help people to find the information they are looking for. Other symptoms may include slowed thinking, poor problem-solving and limited ability to focus. There may also be difficulties with word-finding and visual perception. People with vascular dementia are often aware of their problems and may experience anxiety and depression.

Treatment for vascular dementia may include trying to reduce the risk of further damage by managing blood pressure, cholesterol and diabetes.

Mixed Dementia

It is not uncommon for people to be affected by both Alzheimer's Disease and Vascular Dementia.

Dementia with Lewy bodies

This dementia affects about 10% of people with a diagnosis. It is caused by the development of small protein bodies called Lewy bodies that damage brain cells.

Common symptoms in this type of dementia include disturbances in movement such as shuffling and stiffness, visual hallucinations, fluctuations (ups and downs) in thinking ability and significant variation in attention and alertness.
 
Depression and a general lack of interest are also common. Memory problems may not be a major feature.

Fronto-temporal Dementia

About 12% of dementia cases fall into this category. Fronto-temporal dementia (FTD) results from damage to specific parts of the brain (the frontal and temporal lobes) which are responsible for our behaviour, emotional responses and language skills.

The key symptom of this form of dementia is personality and behaviour change. A person suffering from this illness may withdraw from social events and activities, neglect their personal hygiene and show a lack of judgement and disinhibition. They may also develop ritualised behaviour (always needing to do things in a particular way) and often find it diffi cult to understand emotions in others and express their own emotions.

There may also be changes to eating patterns such as overeating or a preference for sweet foods. In the early stages, this type of dementia is sometimes mistaken for a psychiatric condition or a “mid-life crisis”

There are different types of FTD:
Behavioural variant FTD - this affects behaviour first. Some early changes you may notice are changes to motivation, personality or appetite.

Primary Progressive Aphasias are a type of FTD, the most common are here:
Progressive non-fluent aphasia - this affects language first - early changes you may notice could be; finding it harder to pronounce words, leaving out words in sentences or struggling to understand more complex sentences.

Semantic Dementia - this also affects language first and early changes you might notice could be understanding the meaning of familiar words or struggling to find the right word so using descriptions instead. You may also experience problems with recognising familiar people of objects.

Logopenic aphasia (LPA) - somebody with LPA might have difficulties with searching for the right word to say, although their ability to physically produce speech is not affected. These word-finding difficulties can lead to long pauses in conversations. People with LPA can also get parts of words muddled up, for instance saying “aminal” instead of “animal”. LPA, is usually caused by the same ‘proteins’ in the brain that cause Alzheimer’s disease – some people refer to it as an unusual (atypical) form of Alzheimer’s disease.

Korsakoff’s syndrome

Around 10% of dementias in young people are caused by a lack of vitamin B1 (thiamine), most commonly associated with alcohol abuse.

Rarer types of Dementia

Around 20% of young people with dementia have a ‘rarer’ form of the condition. Examples include conditions that can lead to dementia including Parkinson’s disease dementia, Posterior Cortical Atrophy (PCA), CADASIL, Corticobasal degeneration (CBD), Fahr Syndrome, Creutzfeld Jakob disease.