What is younger onset dementia?

What is younger onset dementia?

Dementia is the term used to describe the symptoms of a large group of illnesses which cause a progressive decline in a person’s mental functioning. It is a broad term which describes symptoms such as loss of memory, intellect, rationality, social skills and normal emotional reactions.

The term younger onset dementia is used to describe any form of dementia diagnosed in people under the age of 65.

The latest figures show that younger onset dementia affects approximately 25,938 Australians with dementia having been diagnosed in people in their 50’s, 40’s and even as early as their 30’s. Due to dementia in younger people being less common than dementia occurring after the age of 65 it can be difficult to diagnose. 

A correct diagnosis is important

Consulting a doctor to obtain a diagnosis early is critical. A complete medical and psychological assessment may identify an easily treatable condition or it may confirm the presence of dementia.

An early diagnosis allows for early planning, the early involvement of support services and perhaps medical treatment.

A diagnostic evaluation might include:

  • A detailed medical history provided, if possible, by the person with the symptoms or sometimes by a relative or friend. This helps to establish whether the symptoms have been slow or sudden, and the impact they are having on the affected person’s life.
  • Cognitive evaluations and/or neuropsychological testing to test abilities or issues in areas such as memory, reading, comprehension, insight and judgment as these abilities may be affected by dementia.
  • Psychiatric assessment to identify treatable disorders such as depression which can mimic dementia, and also to manage psychiatric symptoms such as anxiety or delusions which may occur with dementia.
  • Laboratory tests including a variety of blood and urine tests called a “dementia screen” to test for a variety of illnesses which could be responsible for dementia-like symptoms. A "dementia screen" is available through a doctor or specialist. Other specialised tests may include a chest x-ray, MRI, ECG, PET and CT scan may be recommended.
  • A thorough physical and neurological examination to establish the type of dementia (where possible), and to identify possible medical illnesses which may worsen dementia symptoms such as infection.


Differing needs of people with younger onset dementia

As younger onset dementia  appears at an earlier stage in a person's life, when they are likely to still be  physically and socially active, at the time of diagnosis they may be:

  • In full-time employment
  • Actively raising a young family
  • Financially responsible for a family
  • Physically strong and healthy

The symptoms associated with dementia may therefore be more difficult to accept and manage in a younger person.

For the person with younger onset dementia and their family members there are a number of issues that may arise:

Loss

The sense of loss for the person with younger onset dementia and their family can be enormous. Unplanned loss of income if the person with dementia was earning an income can be a major problem for the family. They can also experience a loss of self-esteem, and a loss of a purpose in their life. Future plans, such as travel or time with children or grandchildren, may no longer be an option.

Changes

Adjusting to changes that come with a diagnosis of younger onset dementia may be difficult. A partner who takes on the caring role of the person with dementia may also have the responsibility of raising the children and managing finances.

Changes to family relationships may also occur. Sometimes families and carers need to reduce or give up work altogether to care for the person with dementia. There can be changes to wider social relationships and changes to a person’s every day way of life. These changes can be significant and unwanted. 

Attitudes

It can be difficult for other people to accept that a younger person can have dementia, particularly when no obvious physical changes can be seen. It may appear that no one else in the family or carer’s age group understands what is happening. Many people affected by younger onset dementia find that friendships sometimes become more difficult as the dementia progresses. Due to lifestyle stages, a younger person with dementia may become isolated as a result. 

Children

Children may have a number of reactions to the disease and these may be strong reactions. At a time when they are trying to cope with growing up, they also have to cope with a family member who is unwell and may find themselves also taking on a caring role. Established roles within the family may change.

Children may become sad, angry or withdrawn. Some young people may have problems talking with their parents because they don’t want to worry them or are afraid of making them sad, or of being a burden. They may prefer to talk to people their own age or to a counsellor. 


Further help

Alzheimer’s Australia can put family and carers in touch with other family and carers of people with younger onset dementia, and provide links to support groups.

Alzheimer’s Australia offers support, information and referral services and counselling. The National Dementia Helpline on 1800 100 500 can be contacted anywhere in Australia.

Alzheimer's Australia can put carers in touch with other carers of people with younger onset dementia or provide links to carer support groups.


Recommended reading

A number of books written on younger onset dementia are available from Alzheimer’s Australia libraries. The libraries also hold other books and videos about dementia and how to manage the condition. Contact the National Dementia Helpline on 1800 100 500 if you would like some more information about these books and videos. 

Who will I be when I die? by Christine Bryden

Christine Bryden was diagnosed with Alzheimer’s disease at 46 and re-diagnosed with frontal lobe dementia when she was 49. This is the first book written by an Australian with this condition and offers a unique insight into her battle with dementia.

This book is available for purchase here.


Suggested links

  • More information about our range of books, videos and help sheets can be found in the Resources section of our website.
  • More information about our support services can be found under Support & Services.
  • Information about our Key Worker Program can be downloaded here.