Journal of Huntington’s Disease 5 (2016) 15–17
DOI 10.3233/JHD-150176
IOS Press
15
Short Communication
Long-Term use of Modified Diets
in Huntington’s Disease: A Descriptive
Clinical Practice Analysis on Improving
Dietary Enjoyment
Bronwyn Moorhouse
a,*
and Caroline A. Fisher
b,c
a
Department of Speech Pathology and Brain Disorders Program, Royal Talbot Rehabilitation Centre, Austin
Health, Kew, Melbourne, Australia
b
Psychology Department, Royal Melbourne Hospital, Melbourne Health, Melbourne, Australia
c
The Melbourne Clinic, Richmond, Melbourne, Australia
Keywords: Diet, dysphagia, Huntington’s disease, nutrition, patient-centred care, patient-focused care, swallowing
Dysphagia is a very common occurrence in
Huntington’s disease (HD). As such, many people
with HD require texture modified diets. This com-
mentary discusses the implications for individuals
living long-term on modified diets – including the
loss of sensory stimulation and dietary enjoyment.
Clinical practice analyses of two interventions aimed
at promoting dietary satisfaction and involvement in
food preparation for those with HD are described and
parameters for future research are discussed.
Problems with swallowing (dysphagia) are com-
mon in Huntington’s disease (HD), throughout the
illness [1–3]. Dysphagia in HD contributes to a
number of issues including inadequate mastication,
difficulties with bolus formation and oral transit,
delayed swallow initiation and reduced pharyngeal
motility leading to increased risk of aspiration [4], a
common cause of death in advanced HD [5]. Dyspha-
gia is also implicated in difficulties with substantial
weight loss in HD [5]. Recent best practice clinical
*
Correspondence to: Dr. Bronwyn Moorhouse, Brain Dis-
orders Program, Royal Talbot Rehabilitation Centre, Austin
Health, 1 Yarra Boulevard Kew, 3101, Australia. Tel.: +61 613
9490 4582; Fax: +61 613 94907501; E-mail: bronwyn.moorhouse
@austin.org.au.
guidelines have been developed to optimise mealtime
assistance in those with HD [3]. The guidelines advise
that once swallowing difficulties have developed,
often in the middle stages of the disease, recommen-
dations should be provided by speech and language
pathologists about modifying the consistency of food
and the viscosity of fluids, to optimise swallow
safety. The guidelines also highlight the importance
of positioning, food placement and behavioural and
environmental strategies in reducing choking and
aspiration, particularly in the later stages of the ill-
ness [3]. Given that those with HD often live for 15
to 20 years following symptom onset [6], they may
require texture modified diets for many years.
While clinically the need for diet modification
in HD is clear, relatively little analysis has been
undertaken into the impact of long-term ingestion of
minced or pur´ eed diets. Recent dietetics research has
indicated that staff involved with the ordering, prepa-
ration and mealtime assistance of texture modified
foods held concerns about the sensory experience for
individuals eating these foods [7]. Concerns included
the food being unappealing and that it could lead to
“taste fatigue”. Suggestions to improve the experi-
ence included maintaining vibrant but natural colours
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