Frontotemporal dementia (FTD) is the second leading cause of young onset dementia and has a prevalence of around 3% in all dementia cases. In Latin America and the Caribbean (LAC), the real prevalence of FTD is unknown and preliminary evidence indicates that it is likely underdiagnosed in both early and late-onset cases.
FTD is a highly heritable group of neurodegenerative disorders, with around 40% of patients having a strong family history. FTD is a large umbrella, describing many phenotypes (corticobasal syndrome, progressive supranuclear palsy, behavioral variant FTD, primary progressive aphasia, amyotrophic lateral sclerosis). Behavioral variant FTD (bvFTD) is most frequently observed, but primary progressive aphasia (PPA) is an important condition to be recognized. No direct relationship between neuropathology and clinical phenotype has been described, suggesting a complex relationship between etiopathogenic and clinical phenotypes. There is a considerable delay in diagnosis in FTD and a high rate of misdiagnosis. Barriers to diagnosis include: i) limited knowledge of FTD in LAC; ii) few validated tools for neuropsychological and speech evaluations in participants with very low education; iii) cultural factors influencing the interpretation of disorders of behavior and social cognition; iv) overlap between late-onset psychiatric disorders and bvFTD; v) the differential contribution of cognitive, behavior and motor impairment in disability.
In addition to overcoming these barriers to diagnosis, individuals with FTD and their caregivers face complex needs that need to be addressed considering the socio-cultural contexts of various LAC. Addressing knowledge gaps in FTD requires consideration of the different levels of the disease from its biological basis to its impact on caregivers and society.
The unique population of LAC (genetic clusters, low literacy and cognitive reserve, multilingual, multi-ethnic, high levels of inequity) presents an opportunity to understand the interplay of genetic, social, and cultural factors in the etiopathogenesis of FTD. There are critical gaps in understanding the genetic risk factors for FTD in LAC, and the role of social determinants of health (including social adversities such as exposure to violence, restricted access to health resources) as they relate to FTD presentation. It is also unclear if the high prevalence of under-treated vascular risk factors are associated with a higher prevalence or earlier onset of FTD in LAC, and if previous psychiatric disorders are associated with FTD in these particular settings in LAC.
The aim of this Research Topic is to bring together research addressing FTD in LAC from various specialties (neurologist, psychiatric, geriatric) and subspecialties (cognitive neurology, movement disorder, neuropsychiatric), and a broad range of disciplines from basic science to social science. In doing so, this collection will describe current state-of-the-art practices in FTD diagnosis in LAC and will identify challenges for future research.
Topics for this collection aim to include, but are not limited to:
i) Introduction aiming to present FTD to a non-specialist and specialist audience and describing a multilevel or pluralistic approach to studying FTD
ii) Historical perspective on FTD in LAC
iii) Basics of FTD (genetics, pathophysiology, pathology, translational research)
iv) Biomarkers (neuroimaging: MRI, DTI, molecular neuroimaging- PET; CSF)
v) Clinical aspects (epidemiology, diagnostics, cognitive and neuropsychiatry studies, evaluation, language)
vi) Caregiver (burden, morbidities, educational programs) and health system
vii) FTD and COVID-19
viii) Multidisciplinary and cross-cultural studies, for example, social cognition and culture, or the importance of social context in the diagnosis of dementia.
We would like to acknowledge that Drs. Adolfo Garcia, Diana Matallana, José Alberto Avila Funes, Leonel Takada, Maria Isabel Behrens, and Nilton Custodio, have acted as coordinators and have contributed to the preparation of the proposal for this Research Topic.
The Topic Editors AS, BM, SMDB, HSG, declare that they are affiliated with the MULTI-PARTNER CONSORTIUM TO EXPAND DEMENTIA RESEARCH IN LATIN AMERICA consortium working on expanding dementia research in Latin America and the Caribbean (LAC)
Frontotemporal dementia (FTD) is the second leading cause of young onset dementia and has a prevalence of around 3% in all dementia cases. In Latin America and the Caribbean (LAC), the real prevalence of FTD is unknown and preliminary evidence indicates that it is likely underdiagnosed in both early and late-onset cases.
FTD is a highly heritable group of neurodegenerative disorders, with around 40% of patients having a strong family history. FTD is a large umbrella, describing many phenotypes (corticobasal syndrome, progressive supranuclear palsy, behavioral variant FTD, primary progressive aphasia, amyotrophic lateral sclerosis). Behavioral variant FTD (bvFTD) is most frequently observed, but primary progressive aphasia (PPA) is an important condition to be recognized. No direct relationship between neuropathology and clinical phenotype has been described, suggesting a complex relationship between etiopathogenic and clinical phenotypes. There is a considerable delay in diagnosis in FTD and a high rate of misdiagnosis. Barriers to diagnosis include: i) limited knowledge of FTD in LAC; ii) few validated tools for neuropsychological and speech evaluations in participants with very low education; iii) cultural factors influencing the interpretation of disorders of behavior and social cognition; iv) overlap between late-onset psychiatric disorders and bvFTD; v) the differential contribution of cognitive, behavior and motor impairment in disability.
In addition to overcoming these barriers to diagnosis, individuals with FTD and their caregivers face complex needs that need to be addressed considering the socio-cultural contexts of various LAC. Addressing knowledge gaps in FTD requires consideration of the different levels of the disease from its biological basis to its impact on caregivers and society.
The unique population of LAC (genetic clusters, low literacy and cognitive reserve, multilingual, multi-ethnic, high levels of inequity) presents an opportunity to understand the interplay of genetic, social, and cultural factors in the etiopathogenesis of FTD. There are critical gaps in understanding the genetic risk factors for FTD in LAC, and the role of social determinants of health (including social adversities such as exposure to violence, restricted access to health resources) as they relate to FTD presentation. It is also unclear if the high prevalence of under-treated vascular risk factors are associated with a higher prevalence or earlier onset of FTD in LAC, and if previous psychiatric disorders are associated with FTD in these particular settings in LAC.
The aim of this Research Topic is to bring together research addressing FTD in LAC from various specialties (neurologist, psychiatric, geriatric) and subspecialties (cognitive neurology, movement disorder, neuropsychiatric), and a broad range of disciplines from basic science to social science. In doing so, this collection will describe current state-of-the-art practices in FTD diagnosis in LAC and will identify challenges for future research.
Topics for this collection aim to include, but are not limited to:
i) Introduction aiming to present FTD to a non-specialist and specialist audience and describing a multilevel or pluralistic approach to studying FTD
ii) Historical perspective on FTD in LAC
iii) Basics of FTD (genetics, pathophysiology, pathology, translational research)
iv) Biomarkers (neuroimaging: MRI, DTI, molecular neuroimaging- PET; CSF)
v) Clinical aspects (epidemiology, diagnostics, cognitive and neuropsychiatry studies, evaluation, language)
vi) Caregiver (burden, morbidities, educational programs) and health system
vii) FTD and COVID-19
viii) Multidisciplinary and cross-cultural studies, for example, social cognition and culture, or the importance of social context in the diagnosis of dementia.
We would like to acknowledge that Drs. Adolfo Garcia, Diana Matallana, José Alberto Avila Funes, Leonel Takada, Maria Isabel Behrens, and Nilton Custodio, have acted as coordinators and have contributed to the preparation of the proposal for this Research Topic.
The Topic Editors AS, BM, SMDB, HSG, declare that they are affiliated with the MULTI-PARTNER CONSORTIUM TO EXPAND DEMENTIA RESEARCH IN LATIN AMERICA consortium working on expanding dementia research in Latin America and the Caribbean (LAC)