Following the sombre announcement that action superstar Bruce Willis has been diagnosed with frontotemporal dementia (FTD), on the heels of fellow strong man Chris ‘Thor’ Hemsworth’s recent discovery of his acquiring the APOE4 gene from both his parents, (putting him at a higher risk of developing Alzheimer’s disease), it is clear that dementia does not discriminate. All of us know of someone who had or has dementia.
A new report from the Australian Institute of Health and Welfare confirmed dementia is the leading cause of disease burden in Australia, marking the first time it has overtaken coronary heart disease for the top spot. What does this mean? Without a significant medical breakthrough, it means that by 2058 an estimated 849,300 Australians will be affected by some form of dementia (not to mention the impact on their families, carers and the socio-economic repercussions). Those who are affected by dementia will, most likely, suffer from Alzheimer’s Disease, the most common form of dementia accounting for roughly 70% of cases.
Frontotemporal dementia, as in Mr Willis’ case, is less common than other types of dementia. Despite this, it is one of the most common forms of early on-set cases, mostly affecting those aged under 65 years. In Australia, data on the prevalence of FTD is limited, though studies suggest that it may account for up to 10-15% of all dementia cases.
Also known as frontotemporal degeneration, FTD is a progressive neurological disorder that affects the frontal lobes (the area behind your forehead) and/or the temporal lobes (the regions behind your ears) of the brainOur temporal lobes each has a slightly different job: the left temporal lobe stores the meanings of words and names of objects, while the right helps us recognise familiar faces and objects.
The frontal lobes are responsible for behaviour, personality, language and executive function.
In contrast to Alzheimer’s disease, memory is only affected later in the progression of FTD, with behaviour change being the most prevalent symptom. According to John Hopkins Medicine, some common examples include; dramatic behavioural or personality changes (such as swearing, stealing, increased interest in sex); socially inappropriate or impulsive behaviours; lack of empathy; inability to use or understand language, including naming objects or difficulty expressing words; frequent mood changes; and increased apathy and decreased motivation to participate in life activities.
There is currently no cure for FTD and it is worth noting that diagnosis of FTD can be difficult because symptoms also occur in other conditions where the frontal lobes are injured (such as stroke) and there can also be significant overlap with several psychiatric disorders (such as depression or schizophrenia).
Moreover, FTD has three different variants which will initially present differently and can be mistaken for other conditions. It is for this reason that FTD is often misdiagnosed or underdiagnosed, particularly in the early stages. This means that the true prevalence of FTD in Australia, and globally, may be higher than currently estimated.
At the crux of it, more support for FTD research is needed, as current treatment for FTD is focused on managing symptoms and improving quality of life. There have been some strides in FTD research in recent years- scientists have made progress in genetic research that has shed new light on some underlying causes. The key now is to understand how these genetic mutations cause FTD and ultimately to develop drugs that will halt or reverse this devastating disease. You can learn more about frontotemporal dementia by attending the Australian Dementia Research Forum, where Professor Peter Nestor will be speaking on the topic of FTD.
Perhaps the one silver lining in well-known and well-loved celebrities being affected by FTD, Alzheimer’s or dementia is that it can pave a way to greater awareness and research to find a cure. As Mr Willis’ family wrote in a statement, “Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately. We know in our hearts that – if he could today — he would want to respond by bringing global attention and a connectedness with those who are also dealing with this debilitating disease and how it impacts so many individuals and their families.”