YOD-RiSoCo: Social Cognition and Risk-taking Behaviour in Patients with Young-onset Dementia

Young-onset Dementia (YOD) refers to dementia with the onset before the age of
65 years. A common type of YOD is frontotemporal dementia (FTD), but there can
also be young onset types of Alzheimer*s disease, as well as many other
different subtypes. Characteristic of YOD is that impairments in language,
perception or (social) behavioural changes are more prominent in the early
disease stages than memory impairments. These symptoms are often
under-recognized, which delays the diagnosis of YOD and consequently
contributes to a much more difficult situation for both patients and their
close others. An important affected domain in various subtypes of YOD, is
social cognition (SC). SC refers to the capacities that enable adequate social
behaviours and interactions and includes aspects such recognition of other
person*s emotional expressions, the ability to experience emotions, empathy and
perspective-taking or theory of mind (ToM). SC is underpinned by
frontal-subcortical networks, which are affected in specific subtypes of YOD.
In addition, impairments in social cognition are also frequent symptoms in
patients with neurological disorders which affect frontal-subcortical networks,
such as severe traumatic brain injury (TBI) or frontally located brain tumours.
Impairments in SC involve an inability to detect emotional signals that
indicate danger during decision-making, or to take other people*s feelings and
perspective into account. Hence, such impairments are frequently linked to
inadequate, inappropriate or even problematic social behaviour, so called
*behaviours of concern, which are potentially harmful to other people such as
aggression or unsafe driving.
At present there are only a few neuropsychological tests available that measure
aspects of SC, but to date, tests that reliably measure the abilities to have
empathy with others and to take their perspective, and to feel emotions and
take these into account in situations involving the safety of other people are
still lacking. Hence, there is a large unmet need for better neuropsychological
measures of social cognition that are sensitive to impairments in social
cognition, also allowing a more timely diagnosis of the specific subtypes of
YOD. Moreover, there is also a lack of assessment procedures that can reliably
identify patients that have a high risk to display unsafe behaviours, in
particular in traffic situations. An additional problem is that to determine
whether patients with early dementia are still safe to drive, the measure that
is used (the CDR score) relies heavily on the presence of memory problems.
Hence, YOD patients with intact memory but severe SC impairments might still be
considered fit to drive.

The overarching aim of this study is to develop sensitive measures for aspects
of social cognition that are crucial for the abilities to display adequate
social-interpersonal behaviours, including traffic safety, as well as to
develop better assessment procedures for unsafe, risk-taking behaviour
endangering other people. These measures will result in better measurement of
impairments in social cognition and behaviour, which will attribute to a more
timely diagnosis of these behavioural YOD subtypes. Also, if we can establish
that the new tests for social cognition significantly relate to the
measurements of unsafe driving behaviour, these tests can also be used for
timely identification of patients at risk for displaying these unsafe
behaviours. And finally, having better assessment procedures for unsafe driving
behaviours will aid in deciding whether patients with early YOD but no memory
deficits and other neurological conditions affecting frontal functions are
still fit to drive. We will develop sensitive measures for different aspects of
social cognition (empathy, theory of mind, emotion experience) and for
risk-taking behaviour.

This study is designed as an observational and experimental case-control study.

There are no direct benefits for the patient. A potential risk is simulator
sickness (similar to car sickness) during the driving simulator test.
Participants are notified of this possibility beforehand and will be monitored
during the test. They will also be informed of their right to stop the test at
any time. A general risk is that assessments (neuropsychological assessment and
driving simulator assessment) can be too demanding for patients; however,
neuropsychologists carrying out the assessments are experienced in testing
vulnerable patients and will carefully monitor whether the assessments are too
demanding, and quit if necessary.