What is Early/Young Onset Dementia?

26 Jan, 2021

About Early/Young-onset dementia

Early-onset dementia is defined as dementia diagnosed in those under the age of 65. It is also referred to as ‘young onset’ or ‘working age’ dementia. In the UK there are an estimated 42,000 people living with early/young onset dementia.

Dementia is widely thought of as a condition associated with old age, because of this the early warning signs of early/young onset dementia are often not recognised or attributed to other causes. The person is often thought to be depressed, suffering from stress, has physical health problems or dealing with relationship changes. This can lead to years of wrong treatment or no treatment or support at all. So, it is vitally important that the early signs are recognised, and a correct diagnosis is made.

Issues that younger people face with dementia in comparison with older people are:

  • They are more likely to have a rarer form of dementia affecting behaviour and social functioning.
  • They are more likely to have familial dementias.
  • Family members are more likely to report significantly higher psychological and physical distress.
  • Employment issues both of the symptomatic person and their partner.
  • They still have heavy financial commitments e.g. mortgage, children.
  • Their families are still young and more dependent.
  • They will have additional caring responsibilities for parents.

What is Dementia?

Dementia is an “umbrella” medical term used to describe a set of symptoms. Someone living with dementia may have problems in multiple areas of brain function. These problems can include memory, language, impulse control, ability to do things for self, personality, understanding of time, etc.  Dementia is a degeneration of the brains’ ability to function and can cause a decline in a people’s ability to think, communicate, access memories and reason.  It can also affect their behaviour, moods and personality.

Everyone’s experience with dementia is different.

Is Early/Young-onset common in the UK?

There are an estimated 42,500 people in the UK who have been diagnosed with early/young onset dementia.  This is around 5% of the 850,000 people living with dementia, although this figure could be much higher because of the difficulties involved in diagnosing the condition and misdiagnosis, the Alzheimer society believes it to be nearer to be 8% to 9% of all people with dementia. This is why education and raising awareness, especially amongst GPs is vital.

It is difficult to recognise dementias that affect younger people, and they are relatively rare. This is why people can be reluctant to accept that there is anything wrong when they are otherwise fit and well, and their symptoms are often attributed to stress or depression by doctors.

Who is affected by Early/young onset dementia?  

Those affected by early/young onset dementia are most likely to be diagnosed with rarer forms of dementia. They are more likely to have a genetically inherited form of dementia.

Studies have shown that people with a learning disability are at greater risk of developing early/young onset dementia.

Common types of dementia in younger people

  • Alzheimer’s disease – accounts for around a third of young people with dementia.
  • Vascular dementia – around 20% of young people with dementia have vascular dementia.
  • Frontotemporal dementia – around 12% of young people.
  • Korsakoff’s syndrome – around 10%
  • Dementia with Lewy bodies – around 10%

Impact of younger people and their families

While young people experience similar symptoms to those who are older. The impact on their and their family’s lives is much greater. They are more likely to still be working when they are diagnosed, have significant financial commitments such as a mortgage, dependent children and often the care of their own parents as well.

Their lives tend to be more active, they have plans, ambitions to fulfil for themselves and their children. They may not have planned for their retirement let alone for what happens if they no longer have the capacity.

Signs and symptoms of early/young onset dementia

The signs and symptoms of early/young onset dementia can vary from one person to another and will be different depending on the type of dementia the person has.  For some, the change can be physical as well as mental.

These are the most common signs:

  • Memory loss
  • Trouble solving problems.
  • Changes in mood and personality
  • Difficulty in completing normal daily tasks such as driving or using a computer.
  • Getting lost in familiar places.
  • Difficulty with conversations or writing.
  • Misplacing things
  • Confusion with the time of day
  • Poor judgement
  • Withdrawal from family and friends
  • Trouble understanding visual images.

What to do next?

If you are worried, the best thing you can do is talk to your GP, explain why you are concerned and that you think it may be early/young onset dementia. The benefit of talking to your GP now is that it will take away the uncertainty which will stop you from worrying, which can cause its own problems like anxiety and depression.

If there is a problem, you will be able to get help and the right treatments. You will be able to access the best sources of support and it will enable you to make early decisions about your future.

We have places for people living with early/young onset dementia. If you would like to speak to our registered manager or matron about your or your loved ones needs to please click here.