Services and resources for families dealing with FTD throughout the world are expanding. Below are resources outside of the U.S. and Canada that provide services to patients and families, as well as professionals.
Institute of Cognitive Neurology
Dr. Facundo Manes, Director, Neurology and Neuropsychiatry
The Institute of Cognitive and Behavioral Neurology (Instituto de Neurología Cognitiva- INECO), is a state of the art specialist centre for the prevention, diagnosis and treatment of cognitive and behavioral disorders. It supports a wide range of empirical research in human cognitive neuroscience and neuropsychiatry. The institute offers diagnosis and treatment of a wide range of disorders including Alzheimer’s and related dementias. The institute also provides orientation, support and training to family and caregivers.
En Espanol: http://www.ineco.org.ar/demencia-frontotemporal/
FRONTIER – The Frontotemporal Dementia Research Group
Prince of Wales Medical Research Institute
Professor John Hodges and Dr Olivier Piguet
A clinical research group in Sydney, Australia dedicated to the study of frontotemporal degeneration (FTD) and related disorders, notably motor neuron disease (Amyotrophic Lateral Sclerosis).
The Australian Fronto-temporal Dementia Association (AFTDA)
Recently formed, AFTDA is the Association for Frontotemporal Degeneration of Australia. Its mission and goals include disseminating information, education and support for persons diagnosed with FTD and their caregivers; promoting public awareness; and lobbying and advocating.
In February 2009, Alzheimer’s Australia and FRONTIER published Younger Onset Dementia: a Practical Guide which is a comprehensive resource for people facing FTD and other early onset dementias. It is available via the Alzheimer’s Australia website at http://www.alzheimers.org.au/
Hospital das Clinicas, University of Sao Paulo Medical School, Sao Paulo, Brazil
Ricardo Nitrini, MD, PhD – Head of Neurology Department, and Director of the Cognitive and Behavioral Neurology Unit
Websites (em Portuguese):
Cognitive and Behavioral Neurology Unit (GNCC): http://gncc.com.br/
The University College London Institute of Neurology works together with the National Hospital for Neurology
and Neurosurgery to provide evaluation, treatment and care for patients with a range of
neurological disorders, including frontotemporal degeneration. For more information, go to
Frontotemporal Dementia Support Group (FTDSG)
The Frontotemporal Dementia Support Group (formerly the Picks Disease Support Group) is a service-based organization whose main aims are to provide information and to support carers of people with frontotemporal degeneration. The group meets several times a year in the United Kingdom and has an annual seminar open to professionals and carers. For more information, visit their website at http://www.ftdsg.org/.
Dominique de Blanchard
Lille–Bailleul Memory Center
Centre Medical des Monts de Flandre
Florence Pasquier, MD, Ph D. and Florence Lebert, MD, Ph.D, Directors
The Memory Center focuses on the care of people with non-Alzheimer’s dementia including FTD. Services include evaluation, diagnosis, and pharmaceutical treatment, as well as a range of continuing care management such as social care and family support. The center hosts a support group for caregivers and publishes a newsletter with information on FTD/Picks that is available on their website.
For more information on the FTD Unit at the Lille–Bailleul Memory Center, visit their website at http://www.alzheimer-adna.com/DFT/DegenerescenceFT.html
Reference Center for Rare Dementias (Centre de reference des Demences Rares)
IM2A- Federation des maladies du systeme nerveux Lhermitte-Chaslin building
47 boulevard de l’hopital
75651 Paris cedex 13
The Reference Center for Rare Dementias (Centre de reference des Demences Rares) is dedicated to patients affected by frontotemporal degeneration (FTD), primary progressive aphasia (PPA), progressive supranuclear palsy (PSP), and corticobasal degeneration (CBD). The center’s principal objectives are to improve the diagnosis of these diseases and to elaborate a strategy for therapeutic, psychological and social support, adapted to each patient according to his or her pathology.
For more information on the Reference Center for Rare Dementias, visit their website at www.cref-demrares.fr.
Information in French
Voici des feuillets d’information a l’intention des familles et des soignants:
– Les aphasies primaries progressives
– La variante comportementale de la demence frontotemporale
Center for Cognitive Disorders
Prof. Dr. Janine Diehl-Schmid
Department of Psychiatry at Technische Universität München
Ismaninger Str. 22
This website aims to help people with frontotemporal disorders and their families to learn more about these conditions and recommend ways to manage them.
Regional General Hospital of Athens “G.Gennimatas”
Memory Disorders Clinic, Dept of Neurology
John Papatriantafyllou, Psychiatrist
Second Dept. of Neurology University of Athens, Attikon Hospital
Behavioral Neurology Unit
Assistant Professor of Neurology, Socrates Papageorgiou
IASIS, 3rd Age Center
73 Krimeas str., Glyfada, Athens
John Papatriantafyllou, Psychiatrist
The Italian Association for Frontotemporal Dementias
Via G. Oberdan 44
The Alzheimer’s Association- Netherlands
3980 CD Bunnik
T 030 – 659 69 00
A website started by Henrik-Jan van der Waal and his brothers after their mother was diagnosed with Pick’s disease to share information and support with others in the same situation. The effort has expanded into a foundation that offers contact to professionals, informational meetings, publications and personal assistance.
Asociación de Demencia Frontotemporal (ADEF)
ADEF aims to educate the public about FTD, provide information, foster research and collaboration with other organizations with similar missions, and to promote voluntary action and partnership to achieve better care of patients with frontotemporal dementia and their families.
***If you are aware of other resources that are not listed here please contact us at firstname.lastname@example.org