Rare Forms Of Dementia European Commission-Books Pdf

Rare forms of dementia European Commission
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Alzheimer Europe Route de Thionville 145 L 2311 Luxembourg. Rare forms of dementia,General Introduction,Final report of a project supported by the. Community Rare Diseases Programme, This project received financial support from the Commission of the European Communities. The report was produced by a contractor for the Health Consumer Protection Directorate General and. represents the views of the contractor or author These views have not been adopted or in any way approved by. the Commission and do not necessarily represent the view of the Commission or the Directorate General for. Health and Consumer Protection The European Commission does not guarantee the accuracy of the data. included in this project nor does it accept responsibility for any use made thereof. Neither the European Commission nor any person acting on its behalf is responsible for any use that might be. made of the following information,European Communities 2005. Reproduction is authorised except for commercial purposes provided the source is acknowledged. Printed by the services of the European Commission Luxembourg. Alzheimer Europe Rare Forms of Dementia Project,Table of contents. INTRODUCTION 8,DEMENTIA DEFINITION CONCEPT 12,EXPLANATION OF BRAIN 16.
DIAGNOSTIC PROCEDURES 18,CARE AND TREATMENT 27,Alzheimer Europe Rare Forms of Dementia Project. By Jean GEORGES, This report presents the results of the Alzheimer Europe project Rare forms of dementia. which was financed in the framework of the rare diseases programme of the European. Commission, Rare diseases are described by the European Community Action programme as diseases of. low prevalence which is generally recognised as less than 5 per 10 000 in the. While quite extensive work has been carried out on the prevalence of dementia the same. cannot be said for the various forms of dementia which are covered in this report and for. which epidemiological data are often either incomplete or missing This presented us with. an obvious problem at the outset of our project in order to decide on which forms of. dementia we should include and which fulfilled the criteria set out by the European. Commission, Although dementia does not only affect older people the likelihood of developing dementia. nevertheless increases with age Thanks to the work of the European Community. Concerted Action on the Epidemiology and Prevention of Dementia1 group EURODEM for. short it is possible to estimate how many people in a given country are likely to have. dementia provided that accurate population statistics are available. In the course of their work members of the above mentioned group pooled data on the. prevalence of moderate to severe dementia in several European countries and came up. with a set of prevalence rates for men and women in 9 different age groups. Age group Male Female,30 59 0 16 0 09,60 64 1 58 0 47.
65 69 2 17 1 10,70 74 4 61 3 86,75 79 5 04 6 67,80 84 12 12 13 50. 85 89 18 45 22 76,90 94 32 1 32 25,95 99 31 58 36 00. By using the 2000 population figures of EUROSTAT and applying the EURODEM prevalence. rates it was possible to calculate the number of people with dementia living in the. For more details about this study please refer to the article Hofman A et al 1991 The. prevalence of dementia in Europe a collaborative study of 1980 1990 findings International Journal. of Epidemiology Volume 20 No 3 pages 736 748,Alzheimer Europe Rare Forms of Dementia Project. European Union Alzheimer Europe estimates this number at 4 731 576 in the current 15. Member States which corresponds to a prevalence rate of 1 25 of the overall population. of the European Union or to use the Commission definition 125 per 10 000. It is clear that dementia in itself is not a rare phenomenon under the Commission. definition and neither are the two most frequent causes of dementia Alzheimer s disease. or vascular disease, While the EURODEM figures are generally accepted it is far more difficult to find a. breakdown of the various diseases covered by the definition of dementia Often the. percentages used vary quite considerable, Alzheimer s disease is considered to be the main cause of dementia and according to the.
quoted research should amount to between 50 and 75 of all causes Vascular dementia. is the second most common form of dementia and it is generally accepted that it accounts. for between 25 and 50 of all cases of dementia, For the purpose of our report we have therefore concluded that all other forms of. dementia account for maximum 25 of all forms of dementia which would give us a. prevalence rate of 31 25 per 10 000, Fronto temporal degeneration and Lewy body diseases would be the commonest of these. rarer forms of dementia and it is generally accepted that they account each for about 5. of all cases of dementia or 7 81 per 10 000 Both of these categories though cannot be. considered as one single disease but rather as a spectrum of different diseases which. would individually fall under the Commission definition of rare diseases. Similarly all other causes of dementia are even rarer and have been included in our. report as well as the rare forms of both Alzheimer s disease and vascular dementia. We found some 30 diseases or disease groups which are either rare in themselves or which. lead to dementia in rare cases For each disease we provide general outline describe the. symptoms and course the causes and risk factors the genetics the frequency the. diagnostic procedures as well as information on care and treatment ongoing research and. available services, The expert group discussed possible ways on how to present these diseases and we. ultimately opted for a classification system based on the causes of dementia as this. system had the advantage of grouping related diseases. The biggest group of diseases is made up of degenerative diseases which are. characterised by a progressive loss of nerve cells and synapses For most of these. Alzheimer Europe Rare Forms of Dementia Project, diseases the causes of this nerve loss are unknown and our knowledge about possible. treatment or prevention remains limited, Infectious diseases are caused by an infectious agent such as a virus or prion.
Metabolic diseases are a group of often treatable diseases which may lead to dementia. and which are caused by an under activity or over activity of a part of the human. metabolism, Traumatic diseases are caused by a trauma and in the disease described in this report. by repeated head trauma, Toxic diseases are caused by the consumption of substances which are harmful to the. human body, Cerebro vascular diseases are diseases of the blood vessels in the brain which are the. second most common cause for dementia, When describing the various diseases we have attempted to be as complete as possible. yet we also noted that for a lay reader some information may be too technical or that. repetitions between various diseases would have become necessary. For these reasons the expert group decided to include some introductory chapters to the. disease definitions, In the introduction Clive EVERS highlights the importance of dedicating a report to rare.
forms of dementia and reminds us of the very special needs and expectations of people. suffering from rare forms of dementia and their carers. In the chapter on Dementia Alexander KURZ reminds us that dementia is not a. disease but rather a syndrome which can be caused by a number of various diseases and. provides a definition of dementia that is useful for the understanding of the following. The chapter on The human brain by Andr DELACOURTE gives an overview of how the. brain functions and provides some information to link the apparition of symptoms to the. areas of the brain which are affected,Alzheimer Europe Rare Forms of Dementia Project. To help us understand the information on diagnosis in the disease descriptions Giuliano. BINETTI has dedicated the chapter on Diagnostic procedures to an explanation of the. various tools that doctors use to come to an accurate and differential diagnosis. Similarly the chapter on Genetics of dementia by Jos van der POEL is aimed at helping. the reader to understand the information on genetics for the various diseases described by. describing the various forms of transmission of genetic diseases At the same time she. raises some of the ethical points involved in genetic testing. In the final introductory chapter on Care and treatment Clive EVERS addresses the. impact of a diagnosis of dementia on a person and his her family and highlights some of. the care and treatment approaches which are relevant to the great majority of rare. dementias covered in this report, On behalf of Alzheimer Europe I wanted to thank the above mentioned experts for their. contributions as well as Sandrine LAVALLE the Communication Officer for the co. ordination and support of the work carried out in the framework of the project and hope. that the collected information will prove useful to all people interested in the rarer forms of. Jean Georges,Executive Director,Alzheimer Europe Rare Forms of Dementia Project. Introduction,By Clive EVERS, By definition there are relatively low numbers of people affected by the extensive range of. these diseases in any population Despite this they have a major impact on health and. social services voluntary organisations carers families and patients. While most of the diseases have different symptoms and consequences they all have some. features in common, They are characterised by severe and often progressive cognitive physical.
psychological and behavioural impairments, They have a profound impact on the lives and capabilities of the people who. develop the diseases, They require major long term commitments in many cases from both health and. social care services, The majority require skilled specialised diagnosis and assessment. A significant number of theses diseases are treatable and need early identification. Whilst dementia is associated mainly with older people in the range of rare diseases. described here many patients may be younger and below retirement ages This will bring. special needs, At primary care level GPs practice nurses social workers and other professionals may not. have any experience of treating individuals with these disorders Currently because of the. low incidence of people with these diseases together with a lack of specialised hospital. residential or nursing home facilities many people with rare dementias receive. inappropriate care They are for example sometimes inappropriately placed in acute. hospital wards medical and psychiatric nursing homes for elderly mentally ill people and. private hospitals located far away from families, Sometimes patients are categorised as having predominantly physical disorders and this.
can result in insufficient care for psychiatric behavioural emotional and cognitive. problems that often develop In fact people with brain diseases and brain damage are at. greater risk of mental health problems and disorders than the general population Their. carers are also more liable to depression and other illnesses resulting from the stress of. providing care to a close relative or friend whose life and personality has changed. A significant number of these diseases are well represented in some European countries by. nationally networked voluntary and charitable organisations such as the Huntington s. Disease Association Alzheimer s Societies Motor Neurone Associations Multiple Sclerosis. Societies etc,Alzheimer Europe Rare Forms of Dementia Project. These organisations have played an increasingly important role in supporting people. affected and their carers and in providing updated information about the disorders to. primary healthcare teams, Research and practice has shown that patients and carer s value a range of key skills and. services to assist in treatment and management, Expert assessment and accurate diagnosis especially of symptoms. and behaviours, In acquired brain injury whilst health professionals can give good attention the condition. itself was often misunderstood In frontal lobe dementia carers wanted early diagnosis as. in hindsight they felt guilty about their inappropriate responses to the patients behaviour. when they were not yet diagnosed, Need for appropriate facilities for rehabilitation respite care and.
Patients are often placed in facilities that do not offer rehabilitation The only residential. respite that is available is often a home for elderly people with dementia or on an acute. psychiatric unit These facilities do not meet the individual needs of people with rare. Specialist information and advice needs to be available about the range of rare dementia s. and about what services and support may be available. Employment and legal advice will be particularly important for patients still of working age. Individual and family counselling may be needed for patients and carers who have young. Centres of expertise and specialism are much valued For example there is evidence that. there are growing numbers of such centres for people with Huntington s disease and. carers But the supply and availability of them remains limited in relation to demand. Genetic counselling is much in demand for these diseases e g Frontal Lobe Type. Dementia Familial Autosomal Dominant AD Familial Parkinson s. dementia account for maximum 25 of all forms of dementia which would give us a prevalence rate of 31 25 per 10 000 Fronto temporal degeneration and Lewy body diseases would be the commonest of these rarer forms of dementia and it is generally accepted that they account each for about 5 of all cases of dementia or 7 81 per 10 000 Both of these categories though cannot be considered as one

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