Help with Young Onset Dementia.
A colleague begins to make simple mistakes at work – they have difficulty using the phone, their behaviour is erratic, they forget appointments. It could be they are just distracted, but if the problems persist over months it could be Young Onset Dementia (YOD).
Most of us think of Dementia as a problem for older people, but it can affect those as young as 30. Compared to Dementia in older people it has different causes – some of which may be inherited genetically – progresses in a different way and impacts people differently, especially given that they may still be at work and have young children.
There are a lot of different ways that young Onset Dementia can affect people. It may cause:
- uncharacteristic behaviour such as disinhibition, irritability or apathy
- memory loss for recent events
- problems with spoken language
- difficulty recognising people or objects
- symptoms of anxiety and depression
What causes it?
Causes of Young Onset Dementia vary. The commonest cause is Alzheimer’s Disease, but proportionately fewer people with YOD have this compared with older adults. Vascular disease such as stroke or inflammation of the blood vessels, Parkinson’s disease, Huntington’s disease and long-term heavy alcohol use are also common causes. Around 10% have fronto-temporal dementia.
Key Facts about Young onset dementia
- Young Onset Dementia is defined as Dementia beginning before the age of 65
- It may affect over 40,000 people in the UK today and could be getting more common.
- Relative to other forms of Dementia, YOD is more often inherited genetically and passed down through families.
- It can be difficult to diagnose because it can present in odd ways and doctors may not suspect it.
- The specialist services for YOD are patchy in the UK
Many people with YOD are not aware of their problems. Families and friends may not be aware either, at first, because the condition often starts very slowly and creeps up over years.
It can affect your ability to work; most people with YOD will eventually find it hard to hold down a job. It can also affect your ability to do daily tasks and interests such as driving, hobbies, cooking and dressing. It can also affect your family; many people with YOD have young families who have to come to terms with a parent having Dementia and losing a breadwinner.
How is it diagnosed?
Because of its rarity and because many of the causes are not straightforward, YOD should only be diagnosed after a very thorough assessment. This will include speaking to specialists skilled in diagnosis of this condition, ideally a neurologist and a psychiatrist working together. An MRI brain scan is essential and an amyloid brain scan or sometimes a brainwave trace called an EEG is helpful. Most people will need a neuropsychological assessment of brain function (called cognitive testing). Sometimes genetic tests may help.
How is it treated?
There are no cures for most causes of Young Onset Dementia. The treatment will depend on the cause. If the cause of the YOD is Alzheimer’s Disease then anti-dementia drugs like Donepezil may help. Occasionally symptoms can be helped by removal of a brain tumour, although this is very rare.
Tackling risk factors like heart disease and heavy drinking is important. Keeping healthy by maintaining physical activity, social contacts and keeping the brain active by cognitive stimulation may also help.
Young onset dementia often causes depression or anxiety and sometimes hallucinations. Treating these is important too.
People with Young Onset Dementia and their families often need a lot of help and support from social services and really benefit from coordinated care by a team of doctors, psychologists, occupational therapists and other clinicians.
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