Information on Young Onset Dementia

What is Dementia?

When dementia affects a person under the age of 65, the medical profession refers to it as ‘early or young onset dementia’.  

Young onset dementia affects adults between the ages of 30-64. It is estimated that there are 42,325 people in the UK living with young onset dementia (Dementia UK, 2nd edition 2014, Alzheimer’s Society). They represent around 5% of the 850,000 people with dementia. This figure could be higher because of the difficulties of diagnosing the condition.  

In the west of Berkshire alone, it is estimated that 300 people have young onset dementia, with about 160 people currently known to health services, living at home or in care homes.

Types of dementia in younger people

The most usual form of dementia is Alzheimer’s disease, but some people have Vascular disease, Lewy Body disease or Fronto-temporal disease.  Sometimes it can be a feature of other illnesses such as Huntingdon’s disease, Parkinson’s disease, Multiple Sclerosis, alcohol-related brain impairment or rarer conditions such as CADASIL.  Additionally, people with Down’s syndrome have a 40% risk of developing Alzheimer’s disease, usually in their 40s and 50s

Why does it develop?

There are likely to be a number of factors, rather than one single cause of dementia. Age, genetic inheritance, vascular risks such as diabetes and high blood pressure and diet are all thought to have an influence.  

The likelihood of developing dementia increases significantly with age.  1 in 1000 people under the age of 65 have dementia compared to 1 in 14 people over the age of 65 with dementia.

Genetic Inheritence:
A small number of people with Alzheimer’s disease have a faulty gene which is passed down through families and usually affects people in their 40s and 50s.  Although these faulty genes are rare you can be referred for genetic testing (which involves giving consent, discussion with the whole family and having a blood test).

Frontotemporal dementia which mainly affects people under 65.  There are different forms which probably have different causes.  Several faulty genes have been discovered which are sometimes passed down through families.

CADASIl is a rare genetic disorder which can cause damage to blood vessels in the brain.  It can be passed down through families.  It is very rare and affects around 1200 people in the UK.  

People with Down’s syndrome are more likely to develop Alzheimer’s disease in their 50’s and 60’s.  

Studies have shown that a diet high in  fruit, vegetables, oily fish and foods low in sugars appear to reduce the risk of dementia.  However, the design of these studies means that definite conclusions about the effect of diet on the risk of dementia cannot be drawn.

Other Factors:  
People who have had a severe head injury or received repeated blows to the head e.g. boxers, are at higher risk of developing dementia.  People who smoke, or have high blood pressure and cholesterol levels, are also more at risk.


Getting an accurate diagnosis can sometimes take time because it can be more difficult to recognise symptoms of memory loss in younger people, or it is put down to other factors such as stress at work, or depression.  It is very important to make sure that rarer forms of dementia or brain inflammation are not missed.

A GP may refer a younger person to a neurologist first and then on to their local Memory Clinic service.  

There is no simple test that can make the diagnosis of dementia. Diagnosis is based on carefully recording the way a persons symptoms develop and change over time; the results of cognitive (brain function) or psychological tests; blood tests and usually a brain scan. You will most likely notice very early changes in your relative so your observations are important and can help us make a diagnosis. A neurologist may decide to carry out other specialist tests i.e. recording electrical activity in the brain (electroencephalogram) or lumbar puncture (where the fluid around the spinal cord is examined).

Specific problems of dementia in younger people

When a younger person has dementia, there may be more adjustments that need to be made for both them and their family. For instance, they may still be supporting their family, carving out a career or have significant financial commitments such as a mortgage.  While the symptoms of dementia in younger people are the same as in older people, emotional and physical responses vary a lot. They may feel more anger and frustration, or may find it harder to come to terms with their reduced ability to take part in the active management of day-to-day tasks.  They may also lose their job or role within the family, whilst still remaining physically fit.


Children of any age need to understand dementia, how it affects their parent’s behaviour and what other changes to expect.  If your relative has children, be aware that their ages may affect how they react to the illness.  Children may become angry, pull away from their family, or because of embarrassment, pull away from their friends. They may be afraid that they will get the disease and younger children may fear that you will become ill. They may be carrying out responsibilities that were previously done by the person with dementia, i.e. looking after a younger child or doing chores.  Make time to talk about dementia to the children and listen to their feelings. Each child will have different needs – find out what they are and how you can meet them.


People with Alzheimer’s disease they may be given donepezil (Aricept), rivastigmine (Exelon), galantamine (Reminyl) or memantine (Ebixa). These are of a group of medications called acetylcholinesterase inhibitors which can help thought processes and brain function for a limited time for some people. In Berkshire, treatment can only be started by the Memory Clinic who will work with a person’s GP to monitor the effects of the medication. They offer Cognitive Stimulation Therapy (CST) groups to people with any type of mild to moderate dementia and research shows they can benefit thought process and brain function, concentration and self-esteem.

What support is available?

YPWD Charity: Further information on support available within Berkshire is highlighted on this website.

Berkshire Healthcare NHS Foundation Trust: Information about dementia can also be found on their website and within their Dementia Guide.

Memory Clinic: Memory Clinic's monitor how a person with dementia responds to their medication. Some clinics run an ‘Understanding Dementia’ course for young people with dementia and a separate one for their carers (as do the YPWD Charity at Wokingham).  They provide practical guidance and also support people with dementia to continue their practical activities and hobbies. They have close links to researchers. They may also signpost you to an Admiral Nurse (a specialist nurse who supports carers of younger people with dementia) and a Dementia Care Adviser specifically for carers of younger people with dementia. 

Day services: Some local areas offer structured daytime activity for younger people with dementia.  A local provider within Wokingham, Reading and West Berkshire is Crossroads.  Within the east of Berkshire a local voluntary provider of outreach services is Triple A.

Other Useful Contacts: Young Dementia UK and the Alzheimer's Society.

Familial Alzheimer’s disease Support Group is a national group for families affected by faulty genes 07952 540 555.


Useful Contacts