Nutrition and Huntington's Disease, A Practical Guide.


libro.jpg - 17015 Bytes Ellen van Broekhoven (dietician), Dirk Gaasbeek (nursing home physician), and Maartje Veninga (speech therapist) work in a nursing home with a special unit for patiens suffering from Huntington's Disease. They discovered that there were no ready answers to questions in relation to, in particular, nutrition for patiens suffering from this disease.
It is for this reason that they decided to pool their knowledge and experience into a very practical guide and to supplement it with information from the skimpy scientific literature on this subject.
The book provides insight into the nutritional problems that exist among patients suffering from this disease from the point of view of various disciplines. With that, it appears time and again that communication, i.e. to understand what the patient wants and to which degree it is possible to discuss problems of vital importance. That is why communication comes up extensively. Another question that is raised is whether or not tube feeding may be a good alternative if regular feeding is no longer possible.
What makes this book so unique is that it serves as a comprehensive guide for medical practitioners and paramedics.
"Nutrition and Huntington's Disease" brings together all of the available knowledge and experience on this subject in a clear guide for use by doctors, nurses, dietitians, speech therapists, physical therapists and ergo therapists.
In this recommendation, Prof. Dr. H.P.H Kremer, neurologist, says: "I warmly recommend this book to those who, either in their work or in the family, have to deal with patients suffering from Huntington's Disease. This is the first practical publication in this field and I hope it will inform and inspire many people."


Recommendation

One of the frustrations of working with people suffering from Huntington’s Disease is the fact that a causal treatment does not exist (yet). Our ideal is to find a drug that slows progression of the disease or that cures patients with Huntington´s Disease. As long as this ideal has not been realised, it seems as if we can do nothing about the disease. However, for those directly involved in the care for those patients it is clear that we can do very much. The core of our “treatment” currently consists of attempts to make life at all levels as bearable and pleasant as possible. It is remarkable, therefore, that little has been published about aspects of those attempts, let alone that they have been subject to any form of scientific research. As data lack, the best thing to do is to rely on experience of those who treat and care for the patients.

The authors of the book at hand possess the experience.
The book results from expertise gained in the nursing homes Heemhof and Hullenoord in the Netherlands, in the past years. This nursing home is specialised in the care for patients suffering from the Huntington´s Disease. The authors were impressed by the feeding and weight problems so often seen in their patients and from their experience and expertise they have developed solutions for those problems. They describe swallowing problems, advise about identifying malnutrition and present recommendations for optimum nutrition. Since the introduction of the so-called PEG tubes for artificial feeding, a lot more is possible than before to maintain patients with swallowing disorders in an optimum feeding condition. However, this form of artificial feeding raises its own ethical dilemmas. You will also find information about that aspect.

I warmly recommend this book to those who, either in their work or in their family, have to deal with patients suffering from Huntington´s Disease. This is the first practical publication in this field and I hope it will inform and inspire more people. But above all, I hope it will help our patients.

Prof. Dr. H.P.H. Kremer, neurologist.


Abstract

Its progressive course makes Huntington´s Disease (Chapter 1) a dramatic disease with progressing disabilities. Furthermore, it is a hereditary disease, which may affect complete families. Although the genetic causes of the disease are known in full detail, we still cannot cure it. The nutritional needs (Chapter 2) of patients with Huntington´s Disease may increase up to 5000-6000 kcal daily; most patients do not succeed in meeting their needs. Sometimes, with nutrient enriched diets, they succeed in eating 4500 kcal daily at most (Chapter 7).
Apart from increased energy needs, almost all patients have to deal sooner or later with swallowing disorders (Chapter 4). Advice about posture and devices may make eating and drinking easier. Communications with patients suffering from Huntington´s Disease is impaired, but not impossible. In order to record an anamnesis and to provide advice, it is important for health care workers to know how to communicate with their patients (Chapter 3).
Motor limitations, swallowing impairments, decline of cognitive functions and changes in their character may lead to limitations in feeding behaviour (Chapter 5). Chapter 6 describes how malnutrition may be recognised.
Constipation often occurs in the chronically ill and may be related to the nature and consistency of the food. Vomiting is an often recurring complaint of patients with Huntington´s Disease. Chapter 8 tackles the causes of constipation and vomiting and offers advice on the subject.
If even energy enriched diets are insufficient and the swallowing disorders become insuperable, artificial feeding through a PEG tube may be taken into consideration (Chapter 9). The PEG tube may add to the quality of life, but the patient may also feel that it lengthens his life (suffering). The authors think it self-evident that a careful consideration should take place, together with the patient and the people involved in his care, before a PEG tube is placed (Chapter 10).
Many drugs have an intended or unintended effect on swallowing, speaking, the oral cavity, pharynx, esophagus and stomach. Chapter 11 provides an overview.
The subtitle of this book is: “A multidisciplinary approach”. Many disciplines are involved in the care of patients with Huntington´s Disease, especially when the disease is in advanced stage. May this book, written from practice in a nursing home (Chapter 12) be a handy guide for all involved.


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