NeuRA researchers have created a frontotemporal dementia ‘road map’ that allows patients and families to see how the disease will progress over time.
“This is the first staging scale that has been published for frontotemporal dementia,” says Neuroscience Research Australia’s Dr Eneida Mioshi.
“Until we did this work, we used a rating scale based on Alzheimer’s disease, which focuses more on memory and is not sensitive to the symptoms of frontotemporal dementia.”
Frontotemporal dementia, or FTD, is a type of dementia that affects personality, behaviour and language skills. Unlike Alzheimer’s disease, which usually affects people in their 70s and 80s, the age of onset of FTD is typically in the 50s or 60s and can be as young as 30.
Until now, patients and families of people with FTD struggled to find adequate information on how the disease would progress over time.
“Families want to know where they are in terms of disease severity, and where the disease will take them because then they can plan for the future,” says Dr Mioshi.
The scale is made up of six stages, ranging from very mild to profound. It rates patients on their ability to perform everyday tasks, such as using the telephone, driving or managing finances and changes in their behaviour.
“The scale tells us which of these abilities will be lost first and which ones will go later,” says Dr Mioshi. “Now we can show families what will happen in the next stage of the disease so they can begin to prepare. For example, they need to know when driving may become unsafe.”
Dr Mioshi based the scale on data from 152 patients. Some of these patients were followed up after one year to check whether the staging was accurate.
The scale will have implications for clinicians, who will be able to measure whether their patient is progressing in the expected way and adjust advice accordingly.
The scale will also be useful for researchers, allowing them to match clinical stages of the disease with images of brain atrophy and brain pathology and better understand the disease.
The scale is freely available to health professionals. It can be downloaded from the Frontier Research Group website.
