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Diagnosing younger onset dementia a complex process

Senior couple sitting together on a jetty.

One in 13 people diagnosed with dementia in Australia are diagnosed before the age of 65. Known as younger onset dementia, it affects almost people 28,000 nationally, and around 2,800 people living in Western Australia.

As younger onset dementia affects a smaller percentage of the population than other dementias, some clinicians may never come across this type of dementia in their career. However, when a younger patient presents with memory problems it is important to consider dementia.

Younger onset dementia is defined as any form of dementia diagnosed in a person who is under the age of 65. The disease can occur in people as young as 30. Most often, it will be Alzheimer’s disease, with vascular dementia and frontotemporal dementia being the next most common types found in younger people.

Genetics can play a role in a small percentage of people with younger onset dementia, with Familial Alzheimer’s disease being one rare form. This usually presents in a person in their 40’s or 50’s, however there are thought to be less than 100 people living with this particular form of dementia in Australia.

As it is rare in a younger person, and as there is no standard diagnostic test available, diagnosing younger onset dementia can be a complex and time-consuming process.

Symptoms of younger onset dementia vary depending on the type of dementia, and the area of the brain affected. They may include short term memory loss; challenges in planning or problem solving; difficulty in completing tasks at home, work or in the community; and difficulty in communicating with others.

Progression of the disease differs for each person depending on their unique circumstances and type of dementia.

Younger onset dementia can impact a person, and their loved ones, very differently to older people. At the time of diagnosis, the person may still be working full time and supporting a young family. This creates some difficult issues.

Dealing with the stigma associated with dementia may be more complex for a younger person and negotiating everyday life may present challenges. Dementia is not outwardly apparent and certainly not expected in someone of that age. Often there will be no one in the person’s peer group who understands dementia or has had any experience with it. Consequently, friendships may be lost.

Children of a parent with younger onset dementia may find it particularly difficult to cope with the changes. They may still need the care and guidance of the parent or could be required to take on a carer role at a time when they would otherwise be becoming independent.

At Alzheimer’s WA, our clients with younger onset dementia tell us that receiving a diagnosis can be a shock, but by far the most difficult part of the process is getting someone in the medical profession to take their concerns seriously. Too often symptoms of younger onset dementia are misinterpreted as signs of stress or depression.

Indeed, memory problems in a younger patient may be caused by stress, depression or another underlying cause. All possible causes will need to be ruled out first, before dementia can be considered.

Yet by receiving a correct and timely diagnosis, younger patients can access early intervention through organisations like Alzheimer’s WA. Government funded support is via the NDIS, but an application must be made before the person turns 65. The earlier a person living with dementia accesses support, the longer they will be able to maintain their current lifestyle and wellbeing. Support provided by Alzheimer’s WA will help a person adjust to living their life well with dementia.

Dr Sean Maher is Honorary Medical Director of Alzheimer’s WA. Alzheimer’s WA is a registered NDIS provider as well as being a provider of Home Care Packages. We offer workshops, respite, carer support and other services for people living with all types of dementia in Western Australia. If you have a patient who is concerned by memory loss or impaired cognition, they can call Alzheimer’s WA on 1300 66 77 88, email support@alzheimerswa.org.au or visit alzheimerswa.org.au.

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