Younger onset dementia (also called early onset dementia) is when any form of dementia is diagnosed in someone who is below the age of 65.
Dementia is a collection of symptoms that are caused by diseases affecting the brain. It is an umbrella term for a number of neurological conditions which cause a progressive decline in a person’s mental functioning. This affects their behaviour, rationality, memory and ability to perform everyday tasks.
Dementia is much more common in the older population, but people have been diagnosed in their 50s, 40s and even in their 30s.
Being diagnosed with younger onset dementia can be a shock, as it is often unexpected. Below is some information to help you understand more about the condition, as well as where you can go for support.
What are the symptoms of younger onset dementia?
The symptoms of younger onset dementia are the same as dementia; they just start at a younger age. They include things like:
- Memory loss that impacts everyday life
- Difficulty with abstract thinking, such as keeping track of bills
- Difficulty completing familiar tasks, such as driving to the shops
- Being confused about time and place
- Difficulty making sense of visual information, such as judging distances while driving
- Problems with language
- Misplacing or losing things
- Losing the ability to make decisions or judgements
- Repetitive behaviour
- Withdrawing from social circles
- Change in mood and personality
How is younger onset dementia diagnosed?
To diagnose younger onset dementia, doctors must eliminate other possible causes of the symptoms the person has experienced and confirm the presence of dementia. This may involve:
- Taking a detailed medical history
- A comprehensive physical and neurological examination
- Laboratory tests, including pathology tests (sometimes called a dementia screen) to test for other diseases which may be causing the symptoms
- Possibly a chest x-ray, ECG and CT scan
- Neuro-psychological testing to determine cognitive function, such as memory, language and comprehension
- Brain imaging
- Psychiatric assessment to check for conditions such as depression
Keep in mind that a diagnosis of dementia in a younger person may take some time, as other conditions are eliminated as possibilities.
How is the impact of younger onset dementia different from other types of dementia?
When a younger person is diagnosed with dementia, it often occurs during a stage in their life when they are quite active with a number of responsibilities. They may be working full time, raising a family, financially responsible for dependents, physically active and socially engaged in their community.
This can often make it harder to process, accept and manage a diagnosis of dementia. Here are some of the issues that can impact them:
- Concern for their loved ones – a younger person is more likely to be supporting themselves and their family with an income, and looking after a household. A dementia diagnosis may cause anxiety over who will provide for the family.
- Loss – the person may be experiencing a sense of loss over aspects of their life such as paid employment, travel plans, cognitive ability, retirement or certain hobbies they may not be able to take part in.
- Attitudes – people don’t usually associate dementia with younger people. It may be hard for others to accept that a younger person has dementia, especially if they don’t see any physical changes. They may think the person is just forgetful or stressed.
Where can people with younger onset dementia find support?
In Australia, there is plenty of support for people who have been diagnosed with younger onset dementia and their families. A good place to start is Dementia Australia’s younger onset dementia online hub where you can find trusted knowledge, resources and support.
We are also happy to discuss how our home care services can help you live well with dementia. Please get in touch for an informal chat.
Younger onset dementia and the NDIS
If you are under the age of 65, are an Australian citizen or have permanent residency in Australia and have dementia, you may be eligible for the NDIS.
The NDIS provides funding who have a permanent and significant disability to access supports to help them with daily life. If you have been diagnosed with younger onset dementia, NDIS supports that are available to you may include:
- Help with daily living tasks such as shower, dressing or eating
- Therapeutic support such as physiotherapy, occupational therpay or speech therapy
- Assistive equipment and daily living aids such as a shower chair, GPS device and bed rails
- Help with social engagement, such as transport to and from appointments and social activities
- Help and training for family members as they care for someone with dementia
To access NDIS support, you need to provide specialist reports that show your dementia diagnosis substantially impacts your ability to function, and outline past and future treatments and prognosis.
You can start the eligibility process by contacting NDIS in 1800 800 110. If you’re feeling overwhelmed by the process, we are more than happy to help. You don’t have to do this alone!
Dementia care at Dementia Caring
We are dedicated to providing high quality support for people living with dementia, no matter what their age. Here is a story of how one of our clients with younger onset dementia was supported by our team throughout her journey.
We understand that no two people are alike, so care must be individually tailored to each person’s needs. We provide:
- Personal care – help with showering, dressing and toileting
- Meal preparation and assistance with eating
- Community engagement and social outings
- Clinical services
- Domestic assistance and more.
For more information, please get in touch for a free consultation.