Dementia is known as an old person’s condition but tens of thousands of Australians are living with younger onset dementia.
A number of different conditions can be labelled as younger onset dementia. Most of them can affect both middle aged and elderly people. There are no cures for the conditions which can have devastating symptoms, but some treatments can improve quality of life.
‘Younger onset’ or ‘working age’ dementia are now the preferred terms rather than ‘early onset dementia’ which could be confused with the early stages of dementia in an elderly person.
What is Younger Onset Dementia?
Younger onset dementia is any form of dementia diagnosed in someone who is under the age of 65. Some people begin experiencing symptoms as early as their thirties. People with Down’s syndrome are also more likely to develop dementia from an early age.
Younger onset dementia is often made up of more than one form dementia. A patient may be diagnosed with one type and then another type later or multiple types of dementia at once, including:
Dementia with Lewy Bodies
What’s the Difference Between Alzheimer's and Dementia?
The terms Alzheimer’s and dementia are often incorrectly used as if they mean the same thing, but there is a difference between the two.
Alzheimer’s disease is one of several causes of dementia. Dementia refers to the range of symptoms that impair the brain making it difficult for people to remember and think.
People with dementia may have more than one condition but Alzheimer’s disease is common in 50-70% of all dementia patients.
Younger Onset Dementia Symptoms
The symptoms of younger onset dementia can make it hard to diagnose because, in younger people, the symptoms can also correspond to other conditions such as depression, vitamin and hormone deficiencies, medications and infections. To receive a diagnosis of dementia, two types of significant impairment must be experienced. A person with dementia may show difficulties with the following:
Symptoms of younger onset dementia include:
Reduced social skills: A young person with dementia may struggle at work with a reduction in their literacy, numeracy and communication skills. They may withdraw from social settings and hobbies.
Memory problems: a person with dementia struggles to hold a train of thought and have a conversation, they get lost in familiar places, are very forgetful and can’t recall names and places.
Vision problems: A young person with dementia may have difficulty perceiving depth and volume. They may mis-reach for an object, find driving difficult and see the words on a page float around. It’s common for them to have visited an optician several times only to be told their eyesight is fine.
Mood changes: reduced empathy and emotional engagement, irrational decision making, aggression, apathy, obsessive behavior and a lack of personal care can develop. Personality changes may be mild or excessive e.g. a once shy and quiet person now has no inhibitions and is far more outgoing than they were before.
Making decisions becomes hard: To make a decision we need to plan, focus and reason. With dementia patients they lose the ability to complete the steps needed to make a decision.
Confusion: a dementia patient may feel like their brain is foggy so they struggle with basic everyday tasks. They might forget how to do basic household tasks they’ve always completed.
Learning becomes difficult: The impaired short-term memory and confusion makes learning new things very difficult. For this reason, a person with dementia may not cope well with change. They need everything to be the same as it has been in the past.
Feeling Depressed: Depression is a common symptom of younger onset dementia with the confusion and difficulties they encounter combined with the diagnosis.
Younger Onset Dementia Treatment
While there is no cure for dementia, there are treatments that can help with the symptoms.
Drugs are available to treat the different types of dementia. Donepezil is used to treat Alzheimer’s disease while antidepressants are prescribed for frontotemporal dementia. The conditions of vascular dementia are treated with different drugs.
Non-drug treatments can also help with young onset dementia. Depression and anxiety is common due to frustration and poor self esteem so counselling is offered.
Staying healthy is important because dementia will progress more quickly in patients who are physically unwell. Doctors recommend regular exercise, no smoking, drinking in moderation and eating a healthy diet.
Causes and Types of Younger Onset Dementia
The following are the most common conditions that cause dementia.
Alzheimer’s Disease is the most common type of dementia in younger people with around one third diagnosed with Alzheimer’s. An unusual form of Alzheimer’s Disease known as ‘atypical’ is more likely to affect young people.
With the atypical form, early symptoms are vision problems, speech difficulties, poor planning and decision-making behaviour. The early symptom of the more common form of Alzheimer’s Disease is memory loss.
Around 7-12% of people with young-onset Alzheimer’s disease have the rare genetic form of dementia called ‘familial’. It passes from one generation to the next through defects in three genes. Symptoms of familial Alzheimer’s disease usually begin between the ages of 30 and 50.
Vascular dementia occurs when there are circulation problems with blood to the brain. It is the second most common type of dementia after Alzheimer’s disease but can coexist with Alzheimer’s in some patients. Around 20% of young dementia patients have vascular dementia.
The two most common types of vascular dementia are multi-infarct dementia and binswanger’s disease. Multi-infarct dementia is usually caused by strokes which damage the cortex of the brain. This impacts learning memory and language abilities. Symptoms include depression, mood swings and epilepsy.
Binswanger’s disease is caused by strokes, high blood pressure, irregular heart rhythms and thickening of the arteries. Symptoms include lethargy, slowness, lack of bladder control and emotional ups and downs.
Frontotemporal dementia relates to progressive nerve cell loss in the front lobes (behind the forehead) of the brain or temporal lobes (behind the ears).
The main cause is brain disorders connected to proteins. Changes to personality and interpersonal relationships are the usual symptoms of behaviour variant frontotemporal dementia (bvFTD) and can begin in people as early as their 20s.They experience difficulty putting words in a spoken sentence. Approximately 12% of young people with dementia have frontotemporal dementia. Almost half of cases have a family history of the condition.
Dementia with Lewy Bodies
Dementia with Lewy Bodies is named after neurologist Frederich Lewy who discovered proteins (Lewy bodies) in the brain that attack nerve cells. The Lewy bodies cause movement problems and cause hunched posture, a shuffling walk and rigid muscles.
Around 10% of young people with dementia have dementia with Lewy bodies. Symptoms include varying degrees of confusion and alertness at different times of the day and from one day to the next. Their thinking and reasoning can change and they may experience hallucinations and delusions. The symptoms worsen with time and shorten lifespan.
This form of dementia is linked to a lack of vitamin B1 known as thiamine. Alcohol abuse is one cause of the poor vitamin levels but can also be caused by excessive vomiting during pregnancy, bulimia and gastric bands. Around 10% of young people with dementia have Korsakoff’s syndrome.
If caught early enough, symptoms can be reversed with high doses of thiamine. The main symptom is memory loss but people can also experience personality changes, difficulty in learning and acquiring new skills.
Rarer Forms of Dementia
Another 20% of young people with dementia have a rarer form of a condition such as Parkinson's disease, Huntington's disease and Creutzfeld Jakob disease.
Risk Factors of Dementia
A study published in the JAMA Internal Medicine followed more than 400,000 Swedish men for 37 years. The men were enrolling for mandatory military service at the age of 18. Most of the men were born between 1950 and 1960. During a follow-up 37 years after conscription, 487 men reported they had been diagnosed with young onset dementia at a median age of 54 years.
Researchers found evidence of nine contributing factors that led to younger onset dementia.
The nine factors - in order of importance - are:
History of stroke
Family history (father with dementia)
Illicit drug use
Low cognitive function at age 18
Low body weight at age 18
High blood pressure of age 18
Men with poor cognitive function and two other risk factors had a 20-fold increase of developing young-onset dementia. Most risk factors could be traced back to adolescence and many were preventable. Some risk factors also increased the chance of developing dementia after the age of 65 years.
Added Difficulties for People with Younger Onset Dementia
Being diagnosed with any kind of dementia at any age is devastating enough but to be younger than 65, there are additional difficulties.
Someone who is middle aged is most likely in the workforce supporting a young family and paying off the family home. People with younger onset dementia may have elderly parents who rely on their child for support.
As the symptoms worsen, a young person with dementia will need to give up work and rely on family or carers to assist them with everyday living. Their quality of life suffers and their life expectancy is shortened.
Some friends and family may have never heard of dementia striking people under the age of 65 and may not be able to see early symptoms so it can be difficult for them to accept.
Support for People with Younger Onset Dementia
Gaining support for patients and their carers is important. GP’s and Dementia Australia can provide information, advice, support and therapies that can help.
The National Dementia Helpline on 1800 100 500 is available Monday to Friday to provide free, over the phone advice to patients and carers.
Many states offer social groups for carers to meet informally with other carers for support. Dementia Australia has a resources page containing videos, tipsheets, apps, brochures and books. A list of Alzheimer support organisations around the world are also listed.
What Can You Do?
If anyone believes they or a family member is experiencing one or more symptoms of early onset dementia, it’s important to see a doctor for further investigation. You may notice a change in personality or behaviour, an inability to complete tasks, loss of interest in life or a vision problem. The symptoms could turn out to be something entirely different so an early visit to the GP can stop unnecessary worry.
Many young people are misdiagnosed with depression, anxiety, stress, menopause or a personality disorder. The Young Dementia Network in the UK believes it takes an average of 4.4 years for a young person to be correctly diagnosed, twice as long as an older person.
An early diagnosis of dementia can help with getting support in the early stages and making the most of life. Treatment can also improve some symptoms of younger onset dementia.