Dementia across the ages, it is not only older people who are diagnosed!

Dementia affects all ages

Did you know that there are over 100 different types of childhood dementia, which are caused by rare genetic neurodegenerative diseases? There is also something called young onset dementia which affects adults and is when they show signs or symptoms of dementia prior to the age of 65. The prevalence of people diagnosed with young onset dementia is growing, with more than 29,000 living in Australia and almost 71,000 in the United Kingdom.

Young onset dementia is more challenging to diagnose because health professionals (particularly GPs) often mistake it for things like mental health issues, stress at work or even menopause for women. Memory issues are not necessarily the main signs being noticed at first, it could be difficulty knowing where usual things are like for instance the microwave or that soya sauce needs to go in the stir fry. Others may be experiencing changes in behaviour such as irritability, increased anxiety or even withdrawal. Some people find it difficult to think of the words to describe things they previously had no difficulty with and planning and problem solving can also become more challenging. Diagnosis can take up to five years and can be scary for both the person living with the disease and their loved ones as they navigate a health system that often knows little about young onset dementia and the supports and services out there that can help.

Dementia diagnosis can take some time

Once a diagnosis has been found, often the person is told “to go home and get their affairs in order” (sadly this is verbatim from a number of carers explaining their journeys). Now it is always a good idea to have your affairs in order and hopefully if you do you won’t need them for a really long time. In Australia, things like Enduring Power of Attorney (for your finances) and Enduring Power of Guardianship (for your health needs) are critical, advance care planning is also beneficial, especially if you can have these completed prior to no longer having the capacity to consent. I would encourage you all to have these in place (or the equivalent overseas as I have many overseas readers – thank you all!) and just locked away in a cupboard somewhere.

Many people who are diagnosed with young onset dementia will live another 7-10 years, others are now living for over 20 years, depending on the type of dementia they are diagnosed with. Similar to late onset dementia (for those diagnosed over the age of 65 years) Alzheimer’s Disease is the most common type but there are also many others, such as Lewy Body disease, vascular dementia and frontotemporal dementia, and lesser known such as posterior cortical atrophy that affects visual information.

One of the issues for people living with young onset dementia is they are of course younger so that often means they have children who are still at school and mortgages to pay, unlike those with late onset dementia. The aged care system in Australia caters for those 65 years and older, including those living with late onset or older age dementia. So, for people diagnosed prior to 65 it means navigating the National Disability Insurance Scheme (NDIS) which for some can be very beneficial but for others can be a minefield and highly frustrating. Often the NDIS Care Coordinators are expected to be all to everyone, and they don’t necessarily know everything about every condition included in the NDIS that someone can receive funding for. The spouse, family or support person of the person living with young onset dementia is expected to become an expert very quickly and to try and navigate the system to receive the best care and services possible for their family member. This can be incredibly tiring and demoralising as many roadblocks occur on this journey, as well as often having the financial and family pressures that happen in our 30s, 40s and 50s.  

A challenging journey

Over the next three years I will be dedicating most of my research to helping Western Australians living with young onset dementia and their loved ones. I received a Research Fellowship from the Western Australian Government and with the help of my colleagues at Curtin University, the Brightwater Research Centre and YODWA Impact Network we will be working on better understanding what works, what doesn’t, and what we can improve for people living with young onset dementia. We will develop a resource pack which will help to navigate the journey of living with young onset dementia and help people to access services and help sooner, so that they can live well. We will also be looking at assisting the main support person or carer to support them during the difficult transition once they receive the diagnosis for their loved one. We are hoping these resources will benefit not only Western Australians but all Australians and potentially those living overseas with young onset dementia.

Brightwater Care Group are already offering evidence-based allied health services in the community and supported independent living homes for people living with young onset dementia, as well as an innovative respite stay at different hotel venues across the Perth metropolitan area. This allows people living with young onset dementia and their main support person to better understand young onset dementia, what help is currently available and how they can potentially access it. A lot more work is required but we have started and will continue to build momentum to help this forgotten group. 

If you know of anyone living with young onset dementia or a health professional working in this space who might like to be involved, please email me here. 

• Dementia not only affects older adults it can affect kids and younger to middle aged adults too

• Remember there are things you can do to reduce your risk of dementia, like being physically active, not smoking, eating well and avoiding excessive amounts of alcohol

• Try and keep socialising with people you like and enjoy spending time with

• If you have questions about a person close to you who has recently been diagnosed or you have been diagnosed with dementia, contact Dementia Australia’s hotline on 1800 100 500, it is free and confidential, available 24 hours a day, 7 days a week and 365 days a year and they will be able to help in so many ways

• If you live outside of Australia there will often be a not-for-profit organisation that is specifically focused on helping people living with dementia and their families and friends. Please don’t hesitate in contacting them, they are the experts in the field and are likely to have some good suggestions on how they can make life a little easier, be it with information or services and supports that might be available in your area.

That’s it from me for blogs for this year, I will see you again in 2026. I wish you all a safe, healthy and happy end to the year.

Live the good life!