Why is it so difficult to get a proper diagnosis for people living with FTD ?

Dear Dr Macfarlane, 

Why is it so difficult to get a proper diagnosis for people living with FTD ? 

Thanks Jo. This is a very pertinent question as it impacts the type of care and support we would recommend for the person diagnosed with FTD. 

Due to the age of onset generally being earlier than other types of dementia, about 10% of people nationally with FTD are initially misdiagnosed with schizophrenia. Because FTD is not particularly common it can also be mistaken for other health conditions - as was the case with Lynne who cares for her husband Rick. You can read more about the couples’ experience with Rick’s FTD diagnosis in the Handy Resources for Carers section of our April newsletter. 

FTD has three broad subtypes we look out for: 

• Language variant – where people with FTD struggle to find the right words in a conversation, or to find the right words for objects. Speech therapy can help this early on for a time.  

• Behavioural variant – where early changes in behaviour or personality occur. People can become more impulsive, disinhibited (doing or saying things they normally wouldn’t) or develop odd eating behaviours such as bingeing, or preferring sweet foods. Apathy (mimicking depression) can also be seen, along with a loss of empathy (an inability to connect with another person’s emotional state). 

• Semantic variant – the least common of the three, this often shows itself as a loss of ability to recognise objects for what they are. Food, for example, may not be recognised as something that is to be eaten (and cues such as smell, or the provision of utensils, are unhelpful). 

Unfortunately, there are no effective drug treatments for FTD, but medication is often used to manage some of the symptoms. 

As the name suggests, the frontal lobe is the part of the brain most impacted with FTD. It controls many aspects of our personality: our ability to control impulses, our emotional expression, and our spoken language.  

When we're taking a patient’s history to consider the possibility of FTD, we look for these symptoms and signs appearing first, rather than any memory issues, which are usually associated with other types of dementia. For people living with FTD, memory can be intact until quite late in their condition.  

It’s important for health professionals to remember that everyone with FTD is different. So, we need to really look at the individual behind the disease when conducting a diagnosis – to help minimise stress for the person with FTD and their loved ones and expedite the appropriate treatment.