Criminal Risk Behavior in Dementia
Profound behavioral changes are an imporatant hallmark of frontotemporal dementia (FTD), including behaviors that may lead to criminal acts. The aim of this working group is to shed a light on the neural mechanisms underlying such criminal behaviors in the context of FTD and other dementias.
Lead investigator: Prof. Dr. Matthias Schroeter (Leipzig, Germany)
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A comprehensive literature review on criminal risk behavior in dementia, aiming to gain insights in its nature, epidemiology, and neural correlates.
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Validation and, if suitable, adaptation of the “Misdemeanors and Transgressions Screener” (MATS) for international study. Currently available in English, Dutch, Flemish, French, German, Italian, Finish, and Spanish. In close co-operation with Dr. Fiona Kumfor (Sydney, Australia).
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This multicenter prospective study aims to assess criminal risk behavior in frontotemporal dementia (FTD) using questionnaires such as the MATS mentioned above, along with other neuropsychological, neuroimaging, and fluid biomarker data.
Current projects:
Past Psychiatric Diagnoses
The behavioral variant of frontotemporal dementia (bvFTD) often presents with symptoms that mirror those of psychiatric disorders, leading to misdiagnoses or diagnostic delay. Notably, older studies showed that up to half of bvFTD-patients receive a prior psychiatric diagnosis.
This working group is dedicated to investigate the past psychiatric diagnoses of individuals ultimately diagnosed with bvFTD. Through extensive chart review, we aim to discover commonalities and trends across this heterogeneous patient population, and identify risk factors for misdiagnosis.
Lead investigator: Prof. Dr. Simon Ducharme (Montreal, Canada)
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Through this multicenter, retrospective chart study we aim to determine the past psychiatric diagnostic background of participants ultimately diagnosed with bvFTD.
Additionally, we aim to determine the potential risk factors for misdiagnosis to guide clinical practice.
Current projects:
Phenocopy Syndrome
The Phenocopy syndrome of FTD poses a complex challenge, as individuals exhibit symptoms resembling FTD, but the findings on imaging and neuropsychological tests do not align with the diagnosis. Although the impairment can be severe, no clear progression over time is observed and the cause remains unknown. This working group aims to describe patient characteristics and pool clinical, imaging, and genetic data to work towards formulating diagnostic criteria, enabling best clinical practice. This could in turn lead to improved counseling for patients and caregivers.
Lead investigator: Dr. Welmoed Krudop (Amsterdam, Netherlands)
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Through this survey held amongst the members of our consortium we aim to gather expert opinions and perspectives on this phenomenon to collectively formulate an accurate description of what we call Phenocopy syndrome. Consequently, these insights will guide hypotheses on the syndrome’s etiology and shape future studies, as well as inform clinical practice recommendations.
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Future project.
We aim to perform a multicenter cohort study, following bvFTD Phenocopy syndrome patients over time.
Current projects:
Right Temporal Variant FTD (rtvFTD)
Frontotemporal dementia (FTD) encompasses a spectrum of diseases, from the behavioral variant (bvFTD) to several language variants, also referred to as primary progressive aphasias (PPA). While bvFTD has been linked to symmetrical or asymmetrical atrophy of the frontal and/or temporal lobes, PPA subtypes manifest with impairment in the left frontotemporal areas. Another variant, characterized by predominant atrophy in the right anterior temporal lobe (RATL), has also been identified, although consensus on its corresponding clinical syndrome is lacking.
Lead investigators: Dr. Hulya Ulugut (Amsterdam, Netherlands | San Francisco, USA)
Current projects:
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This multicenter retrospective study, led by an international working group (IWG), overarching NIC-FTD, aims to establish a cohesive clinical phenotype and lay the groundwork for consensus on terminology and diagnostic standards.
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In preparation.
Social Cognition
Progressive loss of social cognition is considered a hallmark of the behavioral variant of frontotemporal dementia (bvFTD). Currently, several diagnostic tools to quantify a patient’s social cognition abilities exist, although a gold standard still is lacking. The social cognition working group aims to create an inventory of social cognition instruments being used by members of the NIC-FTD consortium, in order to inform future clinical practice recommendations.
Lead investigator: Prof. Dr. Jan Van den Stock (KU Leuven, Belgium)
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Through this survey distributed amongst the experts of our consortium we aim to discover which measurement tools are being used by the NIC-FTD members, and explore how a homogenous data-set could be achieved.
Based on the results of this inventory, a selection of tests will be chosen to be included in an upcoming meta-analysis.
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By fully capitalizing on the collaborative nature of our consortium, we aim to create a shared database to perform a meta-analysis assessing the clinical relevance and importance of several social cognition measures. Results would in turn inform recommendations for the best clinical practice.
Current projects:
Cross-cultural Diversity in FTD
Cultural context can strongly influence the experience, expression, and recognition of behavioral dysfunctions, including those seen in neurodegenerative disease like FTD. The prevalence of certain behavioral symptoms can vary across different cultural settings, and behavioral symptoms that might be alarming in one country may be overlooked or deemed normal in another.
This working group aims to improve diagnostic accuracy and develop culturally sensitive clinical practices.
Lead investigator: Dr. Ratnavalli Ellajosyula (Bangalore, India)
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A retrospective comprehensive multi-center medical chart study on cross-cultural diversity .Examining the frequency, type, and nature of behavioral and psychiatric features across different countries.
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In preparation
