Experts say patients with behavioural variant frontotemporal dementia aren’t picked up early enough.
Patients with a common type of dementia may be barred from treatment and support due to “overly restrictive” diagnostic criteria, Australian experts say.
“Behavioural-variant frontotemporal dementia is a devastating condition that affects personality, empathy and executive function,” lead author Professor Olivier Piguet, from the University of Sydney Brain and Mind Centre, told press.
“Our findings show that the cognitive criterion – particularly the requirement for preserved memory and visuo-spatial skills – exclude many patients who clearly have this form of dementia.
“This risks delays in diagnosis and support, especially critical as bvFTD tends to be a younger-onset dementia.”
Professor Piguet and colleagues analysed data from 110 patients with probable bvFTD and found that around 90% of patients experienced empathy loss or apathy.
The consensus diagnostic criteria, established in 2011, focus on six core clinical features. These include the behavioural features of disinhibition, apathy, loss of sympathy/empathy, compulsive behaviours and hyperorality, in addition to one cognitive feature – dysexecutive profile with preservation of episodic memory and visuospatial ability.
“Currently, a diagnosis of bvFTD is reached by meeting any three (or more) of the core diagnostic features,” Professor Piguet and colleagues wrote.
“Importantly, only 16 patients (14%) met the cognitive criterion as currently defined. This criterion requires the presence of deficits in executive functions, in the context of relatively preserved episodic memory and visuospatial ability.
“Although a majority of our cohort presented with executive dysfunction, this was commonly accompanied by other cognitive deficits – visuospatial, memory – which are currently exclusionary features.”
When the researchers assessed patients for executive dysfunction, regardless of memory and visuospatial performance, 73% of patients met the criteria.
“This research shows that the behavioural symptoms – such as empathy loss and apathy – are far more consistent and reliable indicators for bvFTD than current cognitive benchmarks,” Professor Piguet said.
“We propose removing the requirement for preserved memory and visuo-spatial skills, and adding social cognition as a core diagnostic feature.”
Clinical Professor Dimity Pond, a GP and dementia expert at the Wicking Dementia Centre at the University of Tasmania, said that a diagnosis was important, even if many patients weren’t eligible for medication.
“The harm is that, even if we suspect something’s not quite right without a diagnosis, we tend not to roll out all the things that we can do as GPs for somebody with dementia,” she said.
And GPs could do plenty to support the individual with dementia and their carers.
Professor Pond said that part of her approach was to include the family and carers to provide them with support, as well as potentially providing them information that the person with dementia may not be able to take on board.
She also counselled patients on keeping a good diet, such as the DASH or Mediterranean diet, and exercising – because both could improve dementia screening test scores somewhat and potentially improve functioning.
Another less recognised support that GPs could provide was reminding patients to get their wills in order and appoint a power of attorney, Professor Pond said.
“All of this needs to be documented,” she said. “And if they go to hospital with an event, or if they get transferred to palliative care for some reason, [the service] needs to have all of that information.”
Because these tasks became more challenging as the patient’s dementia progressed, a prompt diagnosis and action by the GP could be very helpful for the patient and family, Professor Pond said.
“It’s a huge emotional event that takes time to grasp, especially if you’ve got cognitive impairment. And for the family, it’s associated with grief because their relative is being diagnosed with a life changing, life shortening disease,” she said.
“So even though there isn’t medication is available for everyone who has dementia, just a small subset, there are still a lot of things that can be done.”
