Abstract
Dysphagia is a very common occurrence in Huntington’s disease (HD). As such, many people with HD require texture modified diets. This commentary 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.
Keywords
Dysphagia is a very common occurrence in Huntington’s disease (HD). As a consequence, many people with HD require a texture modified diet as well as thickened fluids. This commentary discusses implications for these individuals of living long-term on a modified diet, 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 common 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]. Dysphagia is also implicated in difficulties with substantial weight loss in HD [5]. Recent best practice clinical 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, recommendations 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 illness [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 puréed diets. Recent dietetics research has indicated that staff involved with the ordering, preparation 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 experience included maintaining vibrant but natural colours and making the products look more like real food, e.g. by serving shepherd’s pie in a ramekin [7]. Further, it has also been shown that people generally do not enjoy puréed food as much as that of normal texture [8]. Concerns expressed by individuals who were prescribed puréed diets included that the food was indistinguishable, lacking in visual appeal, variety of colour, taste and smell. Consequently, individuals often did not know what they were eating. These individuals also spoke of the food tasting of additives, of missing the taste of raw fresh foods and of the need for special products for key occasions like birthdays [8]. Although this research was conducted with individuals who had good communication skills, and had been eating modified diets for relatively short periods of time, it would be reasonable to extrapolate that many of the same issues are likely to occur for those with HD ingesting minced or puréed diets, potentially over much longer periods. One recent case-study in the literature has reported high rates of aggression in an individual with HD during meal times, which was believed to be related to his dislike of the food after having been placed on a minced diet [9].
INITIATIVES TO ENHANCE ENJOYMENT OF TEXTURE MODIFIED DIETS
Clinical practice analysis (CPA) involves the critical and systematic evaluation of standard clinical practice, and the initiation of changes to this practice, for the purpose of improving clinical outcomes [10]. A recent multi-phase CPA was conducted into the experience of eating a modified diet by one author (BM) along with other speech pathology, dietetics and food service staff at a Brain Disorders Unit. The first phase involved tasting of all puréed and minced meals on the four week menu rotation at a facility catering for the long term care of a number of individuals with advanced HD. This provided the clinicians with insights into potential sensory deprivation of eating a puréed diet over time. After arriving at a group consensus regarding taste, presentation and mouth feel, the range of puréed and minced menu items ordered from the central kitchen for residents in this service was modified to exclude those meals which were least appealing along these parameters. The clinicians also made available additional sauces - tartare, tomato and barbeque, to enhance the flavour of texture modified meals. To further improve choice and variety, a weekly treat (as was already received by residents on a non-modified diet) was also introduced in the form of new commercially available smooth desserts in a range of flavours. While it was difficult to clearly gauge consumer feedback about the meal modifications described above (due to residents’ significant expressive language impairments), it was noted that all five residents with HD in the facility at the time were able to consistently indicate their preference for the flavour of dessert preferred by using eye gaze to look at the desired flavour. Thus, improving the dietary experience for those with advanced HD could involve the provision of more variety and increasing the chance for clients to make active preference choices.
SPECIAL ACTIVITIES FOR INDIVIDUALS EATING A MODIFIED DIET
In addition to concerns about lack of variety and choice of minced or puréed meals prepared in commercial kitchens, issues of isolation from the sensory experience of food preparation are also important to address. Lack of exposure to food in its raw form, and to cooking it to produce an enjoyable meal or dessert, is an issue for many people living in high level care. Furthermore, people eating puréed or minced diets in such facilities are one step more removed from the sensory experience of engaging with real food. As such, a second phase extension to the smooth desserts initiative CPA, a “Foodies” group for residents eating puréed or minced diets was initiated by one author (BM), an Activities Nurse and an OT in the Brain Disorders Unit. Five residents were included in the group, four of whom had advanced HD. All of those with HD had significant communication impairments. They did however manage to participate in different ways using augmentative and alternative communication strategies (e.g. occasional single word responses combined with pointing or tapping the facilitator’s hand) to indicate choice preferences [11, 12].
The “Foodies” group involved a number of different activities including trialling six different recipes from the “Good Looking Easy Swallowing” recipe book [13] over successive sessions and cooking the dishes in front of the residents, allowing them to see the ingredients and process. This provided participants with some choice over which recipes were attempted, as well as exposure to different tastes and textures. It also allowed the group members to see fresh ingredients from the garden, and for the one participant who was still ambulatory to go out into the garden to pick herbs for the savoury dishes. All participants were given as many sensory inputs in relation to the ingredients as possible - for example smelling the aromas of fresh and cooking ingredients, feeling the smoothness of avocado on their hands and for two individuals who were physically able, helping to add ingredients to the dishes being made. There was also a socialisation aspect involving sharing the cooking and consumption of the food.
Participation in the “Foodies” group was used to further facilitate communication between group sessions. Photos were taken of several individuals with HD and inserted into their “Chat Books”. These books detail activities, events and/or objects the person has experienced or enjoyed and are structured so that carers can use simple written material around a photo to facilitate meaningful and inclusive interactions [14]. One Chat Book page involved a photo of a group facilitator vigorously trying to get all lumps out of a white sauce she was cooking, as the person with HD looked on in amusement. For a third participant with HD, communication was facilitated more informally by a carer who used the Foodies group photos on the participant’s iPad to support interactions with him. When shown these photos on his iPad, this participant became quite animated and used lots of positive vocalisations to demonstrate his recognition of himself in the photos.
This commentary highlights the potential sensory deprivation of individuals with advanced HD living long-term on modified diets and suggests several person centred approaches for addressing these issues. In addition to increasing awareness of the topic, the aim is to inspire facilities providing care to people with HD, to be mindful of potential sensory deprivation (i.e. taste, texture, colour and smell of the food) for those ingesting a modified diet over lengthy time periods, and to improve the gastronomical and social experience for these individuals wherever possible. Initiatives to improve this experience should also optimiseparticipation in real life mealtime activities, as advocated by the International Classification of Functioning (ICF) [15]. Further research in this area would be extremely beneficial, including measures of both resident choice making around food using augmentative and alternative communication strategies, use of observational quality of life scales and objective and physical measures of tolerability (e.g. measurement of amount of food consumed and healthy weight gain).