Publications For Carers And Professionals

My Life with HD 

NDIS Pre-Planning Work Book

Understanding Behaviour in Huntington's Disease

A Guide for Professionals

Understanding Behaviour

Lifestyle and Huntington Disease

This fact sheet discusses some of the strategies which can be used by families and carers supporting someone at home, as well as residential care staff supporting someone in a residential care facility, to facilitate active engagement in both leisure and domestic activities.

Lifestyle and Huntington Disease

Communication and Huntington Disease

This fact sheet provides practical advice for carers, family members and friends on the most effective ways to communicate with the person with Huntington's Disease.

Communication and Huntington Disease


Making a Decision about Residential Care

Making the decision to move into a residential care facility can be one of the most difficult decisions faced by people with Huntington's Disease and their carers. This fact sheet explores the process involved in making the decision about residential care and presents some of the issues that need to be taken into consideration when choosing a residential facility.

Making a Decision About Residential Care


Living with Someone who has Huntington Disease

This booklet looks at the types of difficulties experienced by people affected by Huntington Disease - from the perspectives of someone diagnosed with the disease, and someone caring for the person. It then discusses what causes the difficulties and how to manage them.

Living with Someone who has Huntington Disease


The Importance of Dental Care in Huntington Disease

Advice for meeting the special dental needs of people with Huntington Disease.

Dental Care


Eating and Swallowing Difficulties in Huntington Disease

Difficulties with eating and swallowing and maintaining a constant body weight are among the most troublesome complications of Huntington's Disease. This booklet provides practical advice for carers on how to manage these problems.

Eating and Swallowing Difficulties in Huntington's Disease


Dr Julie Snowden. Understanding Challenging Behaviour in Huntington's Disease

Originally presented at the 14th meeting of the International Huntington Association held in Denmark in August 2001, this article attracted much interest when published in the March/April 2002 issue of Gateway newsletter.


Karen Keast. Guidelines for Meeting the Nutritional Needs of People with Huntington Disease

These guidelines were first published in the September/October 2001 Gateway newsletter. 

Nutrition Guidelines


Rosenblatt, A. et al. 2011. A Physician's Guide to the Management of Huntington's Disease, Third Edition

Published by the Huntington's Disease Society of America. An up to date summary of issues in diagnosis and management.

Physician Guide 3rd Edition

Paulsen, J.S. 1999. Understanding Behaviour in Huntington Disease

This book is intended to help families and professionals to better understand the causes of behaviours in Huntington's Disease and to provide strategies to cope with difficult behaviours. Originally published by the Huntington Society of Canada.

Understanding Behaviour


Pollard, J. (ed.) 1999. A Caregiver's Handbook for Advanced-Stage Huntington Disease

The aim of this book is to familiarise carers with Huntington's Disease, so that they can recognise its symptoms and know what to expect as it progresses. It also includes general principles of care and tips that other carers have found useful. Originally published by the Huntington Society of Canada.

Care Giver Handbook for Advanced Stage Huntington's Disease


Return to main publications page to order any of these publications.

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.