Juvenile Neuronal Ceroid Lipofuscinosis, Childhood Dementia and Education
This book presents broad information about education and non-medical interventions for children, adolescents and young adults with juvenile neuronal ceroid lipofuscinosis (JNCL).
The present book builds on existing literature and adds to it by reporting findings from an international project. The book draws on findings from seven countries. It includes findings from a comprehensive survey and interviews with a relatively large number of families and professionals working with individuals with JNCL.
Childhood dementia is introduced in education in this book. The concept of “windows of opportunities” in a childhood dementia setting is about interventions to prepare individuals with JNCL for the ongoing and forthcoming losses in vision, communication, cognition, motor performance and independence.
The book also includes some tailored educational tools and strategies and small trials. The book gives guidelines for practice and suggestions based on information about the typical course and the considerable variation that exists in learning and development within this group.
The book is written in English and intended for teachers, special educators and other professionals working with children, adolescents and adults with JNCL, as well as for families with a member who has JNCL. The book may be useful also for families and professionals working with other diagnostic groups with similar problems.
Stephen von Tetzchner, Bengt Elmerskog, Anne-Grethe Tøssebro and Svein Rokne