Understanding Early Onset Dementia

Young onset dementia is a term used to describe any type of dementia when someone is aged 18-65. There are an estimated 29,000 people living with young onset dementia in Australia, expected to increase to an estimated 41,000 people by 2054.

Because dementia is rarer in younger people, it can often go unnoticed by GPs in early consultations. Diagnosis of dementia takes on average three years and can be longer for young onset dementia.

People diagnosed with young onset dementia will have different needs and experience unique challenges because of their stage of life, including facing stigma, managing family commitments, employment and financial pressure, and accessing appropriate care services and support.

Caring for a person living with young onset dementia can change and become more challenging over time, which is why it’s important to get help by:

• Involving friends and family members to share responsibilities
• Asking employers about carer’s leave or flexible working
• Finding out if you are eligible for government support
• Talking to others going through similar experiences to share practical tips and get emotional support – you can ask Dementia Australia about groups in your area or our online Connecting Peers program
• Getting information and support from specialists including allied health professionals such as a counsellor, occupational therapist and speech pathologist
  

Financial planning

One of the challenges that can be faced by a person living with young onset dementia is a loss of income. A diagnosis of dementia does not always mean someone needs to stop work immediately, however it may mean changes in tasks or adjusting work hours.

It is particularly important for people living with young onset dementia to plan for their financial future. This can help them maintain financial independence, reduce stress and ensure they are prepared.

Being a carer also means understanding the impact a diagnosis can have on your own finances. You should consider:

• Planning for a potential loss of income and increased care costs
• Reviewing the different types of benefits available, insurance policies and possible government support like the National Disability Insurance Scheme (NDIS)
• Budgeting for unexpected and future expenses including support services or assisted living
  
  

Support services

The NDIS provides support for people under 65 with a permanent and significant disability, including those with young onset dementia.

People living with young onset dementia may be eligible to receive NDIS support, for example to help connect with supports and services to help in daily life and connect with community.

Dementia Australia is here to help guide people through complex care systems like the NDIS and to understand what supports may be available. The best place to start is by contacting the National Dementia Helpline on 1800 100 500 – available 24 hours a day, seven days a week – or by visiting dementia.org.au.

Understanding young onset dementia 

Being informed and prepared about young onset dementia can help you decide how best to manage the challenges it brings.

While there is no cure for dementia, understanding how young onset dementia progresses and making sure to have support at the right times means someone can have the best possible chance of receiving quality care and maintaining independence for as long as possible.

Dementia Australia provides support and education for people living with young onset dementia, their families and carers such as family engagement counselling, our Understanding Younger Onset Dementia and Living with Younger Onset Dementia Programs, and our Younger Onset Dementia Guide which provides free, critical information and resources for anyone impacted by young onset dementia, available at www.dementia.org.au/younger.

For more information about caring for someone living with dementia, visit dementia.org.au/living-dementia/family-friends-and-carers#information-advice-and-support-for-carers

For confidential support, information or advice, contact the National Dementia Helpline on 1800 100 500, available 24 hours a day, seven days a week, 365 days a year. You can also access webchat or email support at dementia.org.au.