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What is young onset dementia?

‘Young onset’ is the term used to refer to people diagnosed with dementia under the age of 65 years. Sometimes it is called ‘working age’ dementia. Young onset dementia differs from ‘early dementia’, which typically describes the early stage of Alzheimer’s at any age.

Figures published by the Alzheimer’s Society in 2015 state that there are an estimated 42,325 people with dementia between the ages of 45 and 65 years of age. Alzheimer’s Research UK state that an estimated 2 – 5 % of people with dementia in the UK are under 65 years of age – that could equate to some 41,000 people.

These numbers could be higher, as people with young onset dementia often take longer to diagnose than dementia in older people, or it is initially misdiagnosed. In addition, as people may otherwise be in good health, they may delay going to see their doctor about their symptoms.

Dementia not only affects memory, but also the ability to reason and communicate. It can affect orientation and some people may first realise they have a problem when they start getting lost. Others may have difficulties concentrating or solving problems at work. It can also affect behaviour and mood, with some people becoming withdrawn or feeling low.

As the dementia worsens people may have difficulty doing the simplest of tasks, finding the right words, recognising people, and may behave unpredictably.

Common dementias in people under 65 years

Dementia is not a disease in itself, it is the term used to describe a group of symptoms which result from damage to the brain. The most common forms of dementia in people under the age of 65 years are:

Alzheimer’s disease

Around a third of people with young onset dementia have Alzheimer’s disease, a progressive disorder caused by a build-up of protein in the brain, as well as a chemical shortage which affects the signals within the brain. Early signs of Alzheimer’s are forgetfulness and feeling confused. As people’s illness progresses they may forget having conversations and frequently lose items, or put them in illogical places.

People in the advanced stages may wander, forget how to dress or bathe, and lose their inhibitions. In some cases, especially where people have developed the disease earlier in life, it may have been passed down genetically.

People with Down’s Syndrome are prone to developing Alzheimer’s disease.

Vascular dementia

Vascular dementia affects around 20 per cent of people with young onset dementia.

It is caused by problems in the blood supply to the brain, often due to a series of small strokes. Vascular dementia symptoms include being confused, having trouble concentrating or deciding what to do next, problems with memory, being restless, needing to urinate frequently, and feeling depressed.

People can have vascular dementia and Alzheimer’s Disease at the same time.

Frontotemporal dementias

Frontotemporal dementia (FTD) (or Pick’s disease) is the name of a group of conditions which is a major cause of young onset dementia in under 65s. FTD is caused by a loss of cells in the frontal and temporal lobes in the brain. It is often associated with neurological impairment, including Parkinson’s and motor neurone disease.

There are two types of FTD:

  • behavioural variant frontotemporal dementia
  • primary progressive dementia: comprising difficulties with speech (progressive non-fluent aphasia), or losing the meaning of words (semantic dementia), or they may have slower speech or comprehension (logopenic dementia)

FTD can be difficult to diagnose as there may not initially be any problem with memory, navigational skills, or other aspects of intellect.

People with the type of FTD which is characterised by behavioural changes may start behaving inappropriately, become apathetic, or begin to develop rituals and obsessions – such as ‘clock-watching’ or hoarding. They may also be more or less affectionate to their loved ones, start eating different things to usual, or begin behaving in a child-like way.

People diagnosed with the type of FTD which affects speech may start having problems with longer or specialist words, or they may develop a stutter. They might start pronouncing words differently, or talk more slowly, pausing to remember words.

Where the FTD affects people’s understanding of the meaning of words, may progress later on to difficulty recognising faces, objects, smells and flavours.

If the FTD is combined with a motor neurone disorder people may have difficulty swallowing, or have weak limbs, which may make walking difficult and put them more at greater risk of falling.

Most people with FTD can live at home in the early stages of the disorder, but as their symptoms progress they may become more dependent on their carers, and require the support of social service and mental health teams, until such time as they need to move into a care home. Commonly, people with FTD don’t recognise the extent of their symptoms.

Alcohol related brain dementia (Korsakoff’s Syndrome)

People who are alcohol dependent often have insufficient thiamine (vitamin B1) in their diet which affects the brain and nervous system. Also known as Korsakoff’s Syndrome, it is preceded by a condition called Wernicke’s encephalopathy, the symptoms of which include paralysis of the muscles, jerky eye movements, confusion or mild-memory loss.

Wernicke’s encephalopathy can be treated with a dose of thiamine, but if left untreated will lead to permanent brain damage.

People with alcohol-related dementia tend to have poor recollection of recent events, their personality may change rapidly and they may fail to recognise their condition. About eight per cent of people who are alcohol dependent develop Korsakoff’s Syndrome and it affects about two per cent of the general population, largely men between the ages of 45-65 years.

Dementia with Lewy bodies

Dementia with Lewy bodies (DLB) is caused by the build-up of tiny protein deposits in the brain. Symptoms tend to fluctuate, and people can develop the features of Parkinson’s disease such as slower movement, stiffness or a tremor.

The early symptoms of DLB include problems with attention and alertness, planning and organising. People may also become depressed.

As the illness progresses, people may suffer hallucinations and delusions which can result in unusual behaviour, such as having conversations with relatives who are deceased. They may also have problems sleeping at night.

Around 10 per cent of younger people with dementia have dementia with Lewy bodies.

Posterior Corticol Atrophy

Posterior cortical atrophy (PCA) involves the loss and dysfunction of brain cells particularly at the back (posterior) of the brain. The changes in the brain are similar to those in Alzheimer’s disease, however people with PCA tend to have well preserved memory and language, but their vision and / or literacy skills will decline dramatically over time.

People with PCA have difficulty recognising objects in pictures, or familiar faces. They may also have difficulty judging distances, or reading a newspaper (letters may appear to move around). The disorder can also affect people’s ability to write or spell, deal with money and small change, using kitchen implements and getting dressed.

If both sides of the brain are equally affected people may have a combination of the above symptoms, or they may find that they first notice a problem with one particular area, such as reading.

Living with young onset dementia

People with young onset dementia can lead an enjoyable and active life, enjoying sports and other hobbies, and socialising with friends and family. As the dementia progresses they may need to make changes in their lives, for example they may need to adjust their working arrangements, or give up work altogether.

If children are still living at home, they may need help to understand why their parent is behaving differently. Spouses and partners may find it difficult coming to terms with the diagnosis too and benefit from information and support to cope with the additional responsibility.

Being able to share the experience of living with dementia with somebody else and take time out is important both for people with young onset dementia and their families.