The caregiver’s companion to intellectual disabilities and dementia: 100 real-life questions and answers

People with intellectual disabilities are living longer. As a result, dementia is becoming increasingly common in intellectual disability care. What is dementia exactly? Why do people with Down syndrome have a high risk of developing it? And what about people with intellectual disabilities without Down syndrome? How do you establish a diagnosis? Who is involved in this process? What does dementia do to a person? What is the impact on fellow residents and caregivers? And how do caregivers support changes in
functioning and behaviour?

In The caregiver’s companion to intellectual disabilities and dementia, expert Alain Dekker answers the one hundred most  frequently asked questions from professional caregivers, family caregivers and students in clear language, based on the latest scientific knowledge and experiences in daily practice.

Alain Dekker is a lecturer at the University of Groningen and head of the Department of Practice-Oriented Scientific Research (PWO) at Alliade, a large care organisation providing care for over 8,000 people with intellectual disabilities and vulnerable elderly in the Dutch province of Friesland. He obtained his PhD cum laude from the same university with his thesis Down & Alzheimer. As an expert at the intersection of intellectual disability care and elderly care, he lectures (inter)nationally on dementia in people with
intellectual disabilities.

Figures and tables: Alain Dekker
Illustrations: Rian Melenboer, Vire
Infographics: Baukelina Vries
Cover design: Bas Ekkers and Rian Melenboer, Vire
Design and layout: Mirjam Kroondijk, LINE UP boek en media
Translation: DeepL (Tiemen Folkers, University of Groningen Press)
Correction: Sophie Bous, LINE UP boek en media
Alain Dekker, Jitske Dekker-Brinksma

Published by
University of Groningen Press
Broerstraat 4
9712 CP Groningen
The Netherlands

This is a translation of the original work in Dutch: Wegwijzer verstandelijke beperking en dementie: 100 praktijkvragen en antwoorden

The translation and adaptation of this handbook was promoted by the Erasmus+ project Digital tools for intellectual disability and dementia: professionalisation, resilience and outstanding care. The following people have contributed to this project: Charlie Schillemans (Alliade, the Netherlands), Barbara Gasteiger-Klicpera & Annalisa La Face (University of Graz, Austria), Vanda Canjuga & Karmen Puškar (SAVEZ OSIT, Croatia), Maria Moskofidou & Maria Tsameti (ESTIA, Greece), and Giorgia Uricolo (EUTHRIVE, Italy).

Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the coordinating national agency (OeADGmbH, Austria). Neither the European Union nor the National Agency can be held responsible for them.