Younger onset dementia and disability support

Key points

• Younger onset dementia affects an estimated 28,000 Australians
• There are many different conditions that can cause younger onset dementia
• There is disability support available through the National Disability Insurance Scheme (NDIS) for those who are eligible

People with younger onset dementia can benefit from a range of different disability supports that are tailored to suit their lives and may be eligible for the National Disability Insurance Scheme (NDIS) to fund these supports.

There are also types of disability support outside the NDIS that people with younger onset dementia may benefit from.

This article explains what younger onset dementia is and the types of support people with the condition may benefit from accessing.

What is younger onset dementia?

Younger onset dementia is any form of dementia diagnosed in a person before the age of 65.

Dementia is not a normal part of ageing.

A common misconception about dementia is that it is an age-related condition, but in fact, dementia is an umbrella term for conditions that cause a progressive decline in a person’s functioning.

This could be a loss of memory, intellect, rationality, social skills or physical functioning and there are many types of dementia, ranging from Alzheimer’s disease to the genetic condition Huntington’s Disease.

So, while it is true that dementia is more common in people over the age of 65, there are around 28,000 Australians under the age of 65 living with younger onset dementia.

What does younger onset dementia look like?

Dementia Australia Chief Executive Officer (CEO), Maree McCabe AM, says the signs and symptoms of dementia in younger people can be difficult to notice.

“The early signs of dementia are very subtle and may not be immediately obvious. Early symptoms also vary across individuals,” says Ms McCabe.

“For younger people, the early signs may also be mistaken for things like depression, relationship issues or stress.”

Common early signs of dementia include:

• Changes in mood and personality
• Memory loss that disrupts daily life
• Repetitive behaviour
• Difficulty performing familiar tasks
• Social isolation
• Confusion about time and place
• Problems with abstract thinking
• Loss of initiative
• Poor or decreased judgement
• Language problems
• Other behavioural changes

As there are so many different ways that dementia can present, it is important to remember that each person with dementia is different and will benefit from different disability supports.

“No two people experience dementia in the same way and people often lead active and fulfilling lives for many years after their diagnosis,” says Ms McCabe.

Ms McCabe says because a person with younger onset dementia is at a different stage in life to an older person with a dementia diagnosis, this can also cause differences in how their life is affected.

“Younger onset dementia presents unique social, emotional, financial and support challenges, because the dementia appears at a life stage when someone is likely to be more physically and socially active,” says Ms McCabe.

“When diagnosed the person may be in full-time employment, actively raising a family, financially responsible for their family, and physically strong and healthy.

“The sense of loss for the person with younger onset dementia and their family can be enormous.”

Dementia can also affect your ability to work and change the nature of your family relationships, Ms McCabe explains.

“Unplanned loss of income can have a major impact on the family,” she says.

“This can be made worse by the loss of self-esteem that comes if employment ceases, and the loss of a purpose in life.

“Dementia can affect a person’s ability to complete daily activities and routines. This impacts independence and wellbeing.”

Additionally, any long-term plan you had in place may no longer be viable, such as travel, retirement or time spent with children or grandchildren.

NDIS support

As people with younger onset dementia will be under 65 years old when diagnosed, it is possible to be eligible for the National Disability Insurance Scheme (NDIS).

This will depend on whether you meet the other eligibility criteria, such as being an Australian resident and how dementia affects your everyday life.

For some people, younger onset dementia may also be considered a secondary disability and you may already be receiving disability support through the NDIS before receiving this diagnosis.

For example, people with Down syndrome would qualify for the NDIS because of their diagnosis of Down syndrome, but they also have a much greater risk of developing Alzhiemer’s disease than people without Down syndrome. About 30 percent of people with Down syndrome who are aged in their 50s have Alzheimer’s and could get disability support not only to overcome barriers in their life due to Down syndrome but also due to dementia.

The types of disability support people with younger onset dementia might use NDIS funding for include:

• Showering and dressing
• Shopping and cooking assistance
• Medication management
• Cleaning and gardening
• Home modifications
• Assistive technology
• Therapy
• Attending social support groups

People with younger onset dementia also do not have to live in aged care to get the disability support they need if it is not the best place for them to live, and the NDIS may help them to live at home for longer.

Once a person is on the NDIS their funding will continue after they turn 65, unless they choose to transfer over to My Aged Care for their services. You can learn more about transferring to My Aged Care in our article, ‘What happens to my disability support when I turn 65?‘

People who have younger onset dementia but do not qualify for NDIS will likely qualify for a Home Care Package after turning 65 to help pay for their disability support. You can learn more about Government home care on the AgedCareGuide.com.au.

However, Government subsidised aged care is means tested, so there may not be the same funding provided as there would be under an NDIS package.

Other support

You may also be able to get disability support from community services to help you with everyday life, outside of your NDIS or aged care funding.

For example, there may be a community bus that can pick you up and take you to activities or centres so that you don’t need to drive.

Other disability support for people with younger onset dementia is likely to be informal support from family and friends or support through other Government systems, such as healthcare.

“Support is vital for people living with dementia,” explains Ms McCabe.

“The help of families, friends and carers can make a positive difference to managing the condition and living well.

“There are also healthcare professionals, medications and other therapies that can help with some symptoms, and support you to look after your health and wellbeing.”

Ms McCabe says people with dementia and their supporters can also contact Dementia Australia for help, including for information, advice and supportive programs.

“You don’t need to have a diagnosis of dementia to call us,” she says.

For more information or assistance, contact Dementia Australia on 1800 100 500 or visit their website.

What else would you like to know about younger onset dementia? Tell us in the comments below.

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