ICC-dementia (International Centenarian Consortium - dementia): an international consortium to determine the prevalence and incidence of dementia in centenarians across diverse ethnoracial and sociocultural groups.
BACKGROUND
Considerable variability exists in international prevalence and incidence estimates of dementia. The accuracy of estimates of dementia in the oldest-old and the controversial question of whether dementia incidence and prevalence decline at very old age will be crucial for better understanding the dynamics between survival to extreme old age and the occurrence and risk for various types of dementia and comorbidities. International Centenarian Consortium - Dementia (ICC-Dementia) seeks to harmonise centenarian and near-centenarian studies internationally to describe the cognitive and functional profiles of exceptionally old individuals, and ascertain the trajectories of decline and thereby the age-standardised prevalence and incidence of dementia in this population. The primary goal of the ICC-Dementia is to establish a large and thorough heterogeneous sample that has the power to answer epidemiological questions that small, separate studies cannot. A secondary aim is to examine cohort-specific effects and differential survivorship into very old age. We hope to lay the foundation for further investigation into risk and protective factors for dementia and healthy exceptional brain ageing in centenarians across diverse ethnoracial and sociocultural groups.


METHODS
Studies focusing on individuals aged ≥95 years (approximately the oldest 1 percentile for men, oldest 5th percentile for women), with a minimum sample of 80 individuals, including assessment of cognition and functional status, are invited to participate. There are currently seventeen member or potential member studies from Asia, Europe, the Americas, and Oceania. Initial attempts at harmonising key variables are in progress.


CONCLUSIONS
General challenges facing large, international consortia like ICC-Dementia include timely and effective communication among member studies, ethical and practical issues relating to human subject studies and data sharing, and the challenges related to data harmonisation. A specific challenge for ICC-Dementia relates to the concept and definition of'abnormal' in this exceptional group of individuals who are rarely free of physical, sensory and/or cognitive impairments.
Dementia Collaborative Research Centre - Assessment and Better Care, School of Psychiatry, UNSW Medicine, The University of New South Wales, Sydney, Australia.|Centre for Healthy Brain Ageing (CHeBA), School of Psychiatry, UNSW Medicine, The University of New South Wales, Sydney, Australia.
Henry
H
Brodaty
Dementia Collaborative Research Centre - Assessment and Better Care, School of Psychiatry, UNSW Medicine, The University of New South Wales, Sydney, Australia.|Centre for Healthy Brain Ageing (CHeBA), School of Psychiatry, UNSW Medicine, The University of New South Wales, Sydney, Australia.|Psychogeriatric Mental Health and Dementia Service, St Vincent's Hospital Sydney, Darlinghurst, Australia.
Claudia
C
Woolf
New England Centenarian Study, Geriatrics Section, Department of Medicine, Boston Medical Center, Boston University School of Medicine, Boston, Massachusetts, USA.
Stacy
S
Andersen
Department of Medicine, Albert Einstein College of Medicine, Bronx, USA.|Department of Genetics, Albert Einstein College of Medicine, Bronx, USA.
Nir
N
Barzilai
Department of Public Health and Primary Care, Institute of Public Health, Cambridge University, Cambridge, UK.
Carol
C
Brayne
Sau Po Centre on Ageing, The University of Hong Kong, Hong Kong, SAR, China.|Department of Social Work and Social Administration, The University of Hong Kong, Hong Kong, SAR, China.
Karen Siu-Lan
KS
Cheung
Department of Neurology, University of California Irvine, Irvine, USA.|Department of Epidemiology, University of California Irvine, Irvine, USA.
Maria M
MM
Corrada
Centre for Healthy Brain Ageing (CHeBA), School of Psychiatry, UNSW Medicine, The University of New South Wales, Sydney, Australia.
John D
JD
Crawford
Dementia Collaborative Research Centre - Assessment and Better Care, School of Psychiatry, UNSW Medicine, The University of New South Wales, Sydney, Australia.|Centre for Healthy Brain Ageing (CHeBA), School of Psychiatry, UNSW Medicine, The University of New South Wales, Sydney, Australia.
Catriona
C
Daly
Graduate School of Human Sciences, Clinical Thanatology and Geriatric Behavioral Science, Osaka University, Suita, Japan.
Yasuyuki
Y
Gondo
Gerontology Research Centre, Lund, Sweden.
Bo
B
Hagberg
Centre for Supercentenarian Research, Keio University School of Medicine, Tokyo, Japan.
Nobuyoshi
N
Hirose
Department of Clinical Genetics, VU University Medical Centre, Amsterdam, The Netherlands.|Alzheimer Centre, Department of Neurology, VU University Medical Centre, Neuroscience Campus Amsterdam, Amsterdam, The Netherlands.
Henne
H
Holstege
Department of Neurology, University of California Irvine, Irvine, USA.|Department of Neurobiology and Behavior, University of California Irvine, Irvine, USA.
Claudia
C
Kawas
Department of Neurology and Biomedical Engineering, Oregon Health and Science University, Portland, USA.
Jeffrey
J
Kaye
Centre for Healthy Brain Ageing (CHeBA), School of Psychiatry, UNSW Medicine, The University of New South Wales, Sydney, Australia.|Neuropsychiatric Institute, Prince of Wales Hospital, Randwick, Australia.
Nicole A
NA
Kochan
Department of Social Work and Social Administration, The University of Hong Kong, Hong Kong, SAR, China.
Bobo Hi-Po
BH
Lau
Laboratory of Geriatric Neuropsychiatry, Department of Neuroscience, IRCCS - Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
Ugo
U
Lucca
Department of Medical and Biological Sciences, University of Udine, Udine, Italy.|AAS 1 Triestina, Trieste, Italy.
Gabriella
G
Marcon
Department of Human Development and Family Studies, Iowa State University, Ames, USA.
Peter
P
Martin
Institute of Gerontology, University of Georgia, Athens, Georgia, USA.
Leonard W
LW
Poon
School of Public Health and Community Medicine, UNSW Medicine, The University of New South Wales, Sydney, Australia.
Robyn
R
Richmond
National Institute on Health and Medical Research, INSERM, Paris, France.
Jean-Marie
JM
Robine
Department of Psychiatry, Sahlgrenska University Hospital, Gothenburg, Sweden.
Ingmar
I
Skoog
Dementia Collaborative Research Centre - Assessment and Better Care, School of Psychiatry, UNSW Medicine, The University of New South Wales, Sydney, Australia.|Centre for Healthy Brain Ageing (CHeBA), School of Psychiatry, UNSW Medicine, The University of New South Wales, Sydney, Australia.
Melissa J
MJ
Slavin
Department of Geriatrics, School of Health Sciences in Katowice, Medical University of Silesia, Katowice, Poland.
Jan
J
Szewieczek
Laboratory of Geriatric Neuropsychiatry, Department of Neuroscience, IRCCS - Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
Mauro
M
Tettamanti
Department of Physiology, University of Valencia and INCLIVA, Valencia, Spain.
José
J
Viña
New England Centenarian Study, Geriatrics Section, Department of Medicine, Boston Medical Center, Boston University School of Medicine, Boston, Massachusetts, USA.
Thomas
T
Perls
Centre for Healthy Brain Ageing (CHeBA), School of Psychiatry, UNSW Medicine, The University of New South Wales, Sydney, Australia. p.sachdev@unsw.edu.au.|Neuropsychiatric Institute, Prince of Wales Hospital, Randwick, Australia. p.sachdev@unsw.edu.au.
Perminder S
PS
Sachdev
D000369:Aged, 80 and over; D001921:Brain / Q000502:physiology; D003071:Cognition / Q000502:physiology; D060825:Cognitive Dysfunction / Q000453:epidemiology*; D003704:Dementia / Q000453:epidemiology*; D005260:Female; D006801:Humans; D015994:Incidence; D008297:Male; D015995:Prevalence; D012306:Risk
Centenarians; Dementia; Incidence; International; Prevalence; Risk factors