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 usually used to describe any form of dementia diagnosed in people under the age of 65.
Dementia has been diagnosed in people in their 50’s, 40’s and even in their 30’s.Dementia in younger people is much less common than dementia occurring after the age of 65. For this reason it can be difficult to diagnose, however, the latest figures show that younger onset dementia affects approximately 25,100 Australians.
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 will allow 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 and 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/issue areas such as memory, reading, comprehension, insight and judgment. 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. The dementia screen is available through a doctor or specialist. Other specialised tests 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
A person with younger onset dementia may be unique because the dementia appears at an earlier stage in their life when they are likely to be more physically and socially active. When diagnosed 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 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:
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. Loss of self-esteem, and the loss of a purpose in life may occur. Future plans, perhaps for travel or time with children or grandchildren, may no longer be an option.
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.
An added difficulty can be the attitude of other people. It can be difficult 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 the illness find that friendships can become more difficult as the dementia progresses, and due to lifestyle stages, a younger person may become isolated as a result.
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 find that they also have to cope with a family member who is unwell and may also take 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.
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.
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.