> What is younger onset dementia?
> Diagnosing Younger Onset Dementia
> Needs of people with younger onset dementia
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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 a 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 sixty-five. Although most dementias affect people who are elderly, occasionally younger people are diagnosed with dementia. 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 and its incidence in the community is still not clear.
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A correct diagnosis is important
Consulting a doctor to obtain a diagnosis is critical at an early stage. A complete medical and psychological assessment may identify a treatable condition, or it may confirm the presence of dementia.
A diagnostic evaluation might include:
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A detailed medical history, provided if possible by the person with the symptoms and a close relative or friend. This helps to establish whether there is a slow or sudden onset and its progressions
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A thorough physical and neurological examination, including tests of the senses and movements to rule out other causes of dementia and to identify possible medical illnesses which may worsen the confusion associated with dementia
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Laboratory tests including a variety of blood and urine tests sometimes called a “dementia screen” to tests for a variety of possible illnesses which could be responsible for the symptoms. The dementia screen is available through a doctor. Other specialised tests including a chest x-ray, ECG and CT scan may be recommended
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A mental status test to evaluate the range of intellectual functions such as memory, the ability to read, write and calculate which are often affected by dementia
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Psychiatric assessment to identify treatable disorders such as depression, which can mimic dementia, and also to manage any psychiatric symptoms such as anxiety or delusions which may occur in conjunction with dementia
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Neuro-psychological testing to identify retained abilities and specific problems in areas such as comprehension, insight and judgment
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Are the needs of people with younger onset dementia different?
A person with younger onset dementia will need extra consideration because the dementia appears at an earlier stage of their life when they are likely to be more physically and socially active.
When diagnosed they may be:
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In full time employment
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Actively raising a family
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Financially responsible for the family
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Physically strong and healthy
Changed behaviours that are associated with dementia may be more difficult to accept and manage in a younger person. For the family member who is caring for someone with younger onset dementia 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. This can be made worse by the loss of the self-esteem that usually comes with working, and the loss of a purpose in life. Future plans, perhaps for travel or time with children or grandchildren may no longer be viable.
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Changes
Carers who are partners may have the double responsibility of caring for the person with dementia as well as raising children and managing finances. Sometimes families and carers have to reduce or give up work altogether to care for the person with dementia. These changes can be significant and usually unwanted.
Attitudes
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. Most people affected by the illness find that friendships have a tendency to fade as the dementia progresses, but a younger person’s friends may break away even earlier.
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Children
Children may react differently to the disease, but are likely to have strong reactions. At a time when they are trying to cope with their own growing up, they find that they also have to cope with a family member who is unwell.
They may become angry and 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 an extra burden. They may prefer to talk to people their own age or to a counsellor.
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Remember You are not alone
Alzheimer’s Australia can also put family and carers in touch with other family and carers of people with younger onset dementia, and provide links to support groups.
Further Help
Carers are not alone
Alzheimer’s Australia offers support, information and referral services and counselling. The National Dementia Helpline on 1800 100 500 can be contacted from anywhere in Australia. Alzheimer's Australia can also put carers in touch with other carers of people with younger onset dementia or provide links to carer support groups.
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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?
Christine Boden
Christine Boden 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 the condition and offers a unique insight into her battle with dementia.
Young people with dementia: Planning,practice and development
edited by Sylvia Cox and John Keady
This is the first book to address the subject of younger people with dementia in its own right. Although not specifically for carers, it explores the implications for younger people with dementia and their families at personal, planning and service development levels.
The books listed above are all available for purchase on Alzheimer's Australia Online Bookshop - an easy way of purchasing books which cover a wide range of topic relating to Alzheimer's disease and dementia.
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More information about our range of books, videos and Help Sheets can be found in Publications & Resources.
More information about our support services can be found in Services & Support.
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Print version of this information
Help Sheet - What is younger onset dementia?
PDF file, 54 KB, July 2005
© Alzheimer’s Australia 2005
Alzheimer’s Australia is responsible for the content of this Help Sheet.
This publication provides a general summary only of the subject matter covered. People should seek professional advice about their specific case. Alzheimer’s Australia is not liable for any error or omission in this publication.
created: 12 May 2003
updated: 14 August 2007
