Exploring the Options: Developing a collection of modified diet recipes for people living with Huntington's disease. Introduction Method

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1 Page 1 Exploring the Options: Developing a collection of modified diet recipes for people living with Huntington's disease. Georgina Hett and Diane Quinn Brightwater Care Group Georgina.Hett@brightwatergroup.com Introduction Huntington s disease is a neurodegenerative condition known to impact movement, behaviour and cognition (Heemskerk and Roos, 2011). These disturbances contribute to dysphagia (swallowing difficulties), which, in addition to multifactorial changes in metabolism act to negatively affect an individual s ability to eat safely, eat with enjoyment, maintain body weight and ensure adequate levels of nutrition (Hamilton, Wolfson, Peavy, Jacobson and Corey-Bloom, (2004) and Brotherton, Campos, Rowell, Zoia, Simpson and Rae (2012)). For many individuals, there are emotional elements to a changing relationship with food, including the effects of anxiety, apathy or depression, which can alter appetite (Brotherton et al., 2012). For those living in care facilities there are also institutional factors and procedures at play which can limit choice and a person s opportunity for contact with food preparation. It is acknowledged that in long-term care environments satisfaction with food options play a role in determining intake levels, resultant nutrition and well-being (Barnes, S., Raiswell, C., Wasielewska, A., and Drummond, B., (2013) and Wright, Connelly, Capra and Hendrikz (2013)). Given the benefits that increased involvement and satisfaction with meals/mealtimes can bring, a project was undertaken which aimed to collate recipes for tasty, well-presented, and texture modified meals with the input of a group of six people living with Huntington s disease in a community home. These recipes were used to create a cookbook, the development of which focused on providing varied food options that meet the safety and nutritional needs of people with HD while maintaining an inclusive mealtime environment. Method The primary aim of the project described above was the compilation of a cookbook containing recipes suited to individuals who have been recommended a texture modified diet. This compilation endeavoured to share information gathered in the course of meeting the nutritional, health and safety needs of the 6 residents described above, who were each living with early to mid-stage Huntington s Disease. Prior to project commencement, facility staff planned and prepared resident meals on-site, offering these in a communal, family-style environment where food goes directly from kitchen to table. These meals were prepared and modified (as required) with taste, presentation and safety in mind. These texture modifications (categorised as soft diet, minced and moist or smooth pureed diets) are often recommended for people experiencing dysphagia as a means of facilitating safe intake.

2 Page 2 Site staff had received positive feedback from various stakeholders for their efforts in tailoring meals to meet residents needs and food preferences. In addition, other associated care homes had requested input and advice in meeting the needs and improving the nutrition and mealtime experience of residents with Huntington s Disease. It was these circumstances which prompted staff to gather recipes that met, or were easily altered to meet, modified diet guidelines as described by the Dieticians Association of Australia and the Speech Pathology Association of Australia (2007). Initially, in order to create a group of recipes that offered variety, different categories of food were targeted, including snacks, main meals, desserts, and special occasions. Specific recipes were discussed in collaboration with residents care staff, and speech pathology staff to ensure ease of preparation, safety, acceptance and appeal of the dishes. Each recipe was trialled and evaluated to determine if it met resident preferences and dietary needs, and the recipes were recorded. Particular attention was paid to presentation of dishes, often a significant barrier to perceived pleasure of modified diet (Blaise, 2009). Selected dishes were prepared and served to residents in accordance to house convention, with residents dining as a group at a dining room table, set with cutlery, placemats and individually modified meals. Each item was photographed by staff onsite for inclusion in the publication. Resident feedback and staff observation of intake further informed judgements on the manageability and suitability of dishes for resident needs. The most successful recipes were compiled and published as a cookbook which can be made available to those wishing to explore the recipe options available for those requiring a modified texture diet. Outcomes As the primary intended outcome, the production of a texture modified diet cookbook was achieved. This involved the integration of mainly soft and smooth puree recipes in the broad categories of snacks and appetizers, soups and vegetables, mains and desserts. The recipes are shown in soft or smooth puree form, and provide an example of how modified diet options can be prepared and presented as part of a safe and satisfying mealtime experience. Beyond the achievement of this central aim, additional and unexpected outcomes were experienced for both staff and residents in the community home where the book was developed, and beyond. These outcomes are as follows:

3 Page 3 Positive resident reports of taste and enjoyment of meals: With the integration of known resident preferences, and the increased availability of varied and new foods within the house menu, residents expressed positive responses in regard to the taste, presentation, variety and novelty of the meals and snacks provided. Increased frequency of social interaction and communication through resident involvement in food choices and preparation: During meal preparation and intake, as well as during planning and discussion of potential recipe options, discussion between residents and staff allowed the opportunity for informal feedback and conversation. Residents were encouraged to, and provided opinions on elements of the meal including appearance, taste, smell, flavour, texture and overall enjoyment. As residents did so, the project acted as a catalyst for increased communication among staff and residents, the sharing of information about food preferences, meals and occasions from earlier life. The activity in the house kitchen also brought often disparate residents together, encouraging social engagement. Increased exposure and education regarding dysphagia and diet modification, for various stakeholders: Over the course of the project, it was necessary to review and discuss the characteristics of modified diets, and the underlying mechanisms which necessitate these modifications. Residents, staff from various disciplines, and other interested parties were exposed to information regarding dysphagia and diet modifications, increasing awareness of resident needs, both at present and in the future. In addition, the production and modification of recipes and dishes exposed those involved to a broader base of knowledge regarding ingredients, cooking and modification techniques which can be used to facilitate a texture modified diet. The effort informing the presentation and photography of dishes also reinforced the significant impact of appearance, smell and flavour on the appeal and acceptance of food. A contribution to maintaining resident weights: Since the initiation of the cookbook project, the utilization of recipes and the knowledge and techniques unearthed in the process, the residents of the community house involved have all maintained a steady weight. This reinforces the role of the strategies involved as part of a holistic approach (which may incorporate medical, pharmaceutical, dietetic and behavioural considerations) to encouraging intake and nutrition supporting individuals to maintain a healthy weight. A role in the establishment of a food-based activity program at another community site: Following on from the cookbook project, a sister-site for residents living with later stage HD has commenced a regular program to support varied nutritional intake for the residents who live with them and who are currently receiving their meals from a central catering facility. This approach has been shown to encourage intake in

4 Page 4 residents who have low body weight and reduced intake of the smooth puree options regularly available. These residents have responded with enthusiasm to snack foods and desserts prepared by staff on-site. In addition, the same site is currently implementing a volunteer-supported expansion of the program to incorporate the preparation of a variety of full meals with greater frequency. Discussion The physiological and psychological changes associated with the progression of Huntington s Disease are known to impact the abilities and safety of a person s intake in a variety of ways including physical changes to the ability to chew and swallow, appetite changes, weight loss, and reduced interest and involvement with food. Dysphagia, or swallowing difficulty, is a defining characteristic of Huntington s Disease, with the oral, pharyngeal and oesophageal stages of swallowing being impacted. This may emerge in even the earlier stages of HD, and can have profound implications for a person s health. Further, difficulties in self-assisting with meals, due to limitations with cutlery and crockery use and the impact of chorea movements on mealtime positioning act to compromise the safety and efficiency of intake for individuals with Huntington s Disease (Heemskerk and Roos, 2011). Texture modified diets are a means of addressing and limiting the impacts of dysphagia. They have been shown to increase safety of intake by reducing risks of aspiration and choking. They also address issues of fatigue associated with chewing and swallowing more challenging diet options (Dieticians Association of Australia, 2007). However, modified and prescriptive diets can act to limit the appeal of meals, resulting in reduced intake and nutrition. More liberal diets act to offer greater variety and an increased quality of life through perceived enjoyment of meals (Wright et al, 2013). In the preparation of the cookbook, and the process of trialling and sampling dishes, the focus on variety and presentation of modified texture diet options acted to limit the impacts of dysphagia for those involved. Safer and more successful swallowing acts to reduce the instance of airway compromise (a cause of outcomes such as choking, aspiration and chest infections), and supports people to maintain health. Furthermore, increased staff and resident awareness, regarding dysphagia and the characteristics of texture modified foods, works to support residents in achieving safe and appropriate intake. Emotional changes experienced as a by-product of Huntington s Disease can manifest in poor intake associated with a reduced desire to eat, feelings of apathy, fear or anxiety and a decreased interest in food. Anxiety, which may be associated with physical changes to swallowing, and heightened risks of choking and aspiration,

5 Page 5 can exacerbate physical manifestations of Huntington s Disease and further heighten concerns (Brotherton et al., 2012). By extension, reduction of the negative impacts of dysphagia, via a variety of appealing, texture modified diet options, could be seen as a means of limiting anxiety surrounding food as a person s swallowing ability declines. Throughout the project, positive resident reports of taste and enjoyment of meals acted to support residents in maintaining a positive relationship with food and to lessen the mutual influence of emotion and appetite. In addition, in relation to this specific project, positive feedback acted to reinforce the strategies used and presented an overt expression of improved resident mealtime experience and wellbeing. The maintenance of intake through the provision of interesting, tasty and familiar foods acted as a strategy to uphold interest in food and also to minimise the perceived impact of texture modifications, which can be a difficult change to accept. The maintenance of resident weights acts to support the notion that the project, its approaches and its outcomes can support residents in maintaining appropriate levels of intake to avoid the weight loss frequently associated with Huntington s Disease. Aspects of institutional care environments, and their mealtime procedures, can also play a role in facilitating or limiting residents intake or mealtime options. These factors can include; limited control over food and diet choices and reduced access to favourite/familiar comfort foods - often governed by modified diet recommendations and facility menu limitations. Reduced input into food preparation, decreased exposure to the smells and flavours of cooking and an absence of homestyle dining/service arrangements should also be considered as factors in a person s changing experience with eating and drinking. Tray service and individual seating can reduce mealtime satisfaction, whereas family-style dining, resident choice in meals, social engagement at mealtimes and maximised flavour and aroma have all been shown to improve appetite, intake and overall satisfaction with food (Wright et al, 2013, and Barnes et al, 2013). Factors such as these, utilized with in the process of creating the cookbook, should be incorporated into mealtimes where possible in order to support a positive mealtime environment. Another significant impact of Huntington s Disease is the effect it has on communication, both in regard to the ability and drive to interact. This reduced communicative ability impacts on a person s ability to advocate for themself and express thoughts and feelings. In addition, apathy and depression are significant roadblocks to communicative effectiveness (Hamilton, Ferm, Heemskerk, Twiston- Davies, Matheson, Simpson and Rae, 2012). The universality of food, and the discussion facilitated by staff acted to stimulate communication in a group whose condition presents barriers to the ease and effectiveness of communication. Interactions were geared toward encouraging residents to express preferences and opinions, which is a communicative function that may not easily realised among

6 Page 6 people living with HD (Hamilton, Ferm, Heemskerk, Twiston- Davies, Matheson, Simpson and Rae, 2012). The ability to minimise the impact of the far-reaching effects of Huntington s Disease on an individual s intake and meal times acts to support the strategies employed during the process of compiling and trialling the recipes for the cookbook project. The follow-on implementation of a food-based activity program at a sister-site gives encouragement for the potential for broader quality of life improvements for individuals living with all levels of Huntington s disease. Conclusion In the process of producing a recipe compilation aimed at supporting the needs of residents living with HD, this project has acted to promote wellbeing, encourage collaboration and engagement in mealtimes, support nutrition and mealtime safety and offer individuals a greater level of control and self-advocacy. Embracing approaches including the use of modified diet textures, increased choice and variety of meals, a family-style dining approach, and facilitating closer social engagement and involvement around meals has allowed for the creation of a community care environment where residents needs are met, their input is respected and quality of life is emphasised. In accordance with evidence-based expectations, these approaches have been seen to have positive impacts within the trial context, but also have the potential to benefit broader populations. It is hoped that the availability of the cookbook, as a product of these approaches will act to improve quality of life more broadly for people living with Huntington s disease.

7 Page 7 REFERENCES: Barnes, S., Raiswell, C., Wasielewska, A.,and Drummond, B. (2013). Exploring the mealtime experience in residential care settings for older people. Health and Social Care in the Community, 21(4), Blaise, M. (2009). Mealtime Experiences of Hospitalized Older Patients Requiring a Puree Consistency Diet. University of Montreal, Montreal, QC. Brotherton, A., Campos, L., Rowell, A., Zoia, V., Simpson, S.A. and Rae, D. (2012) Nutritional management of individuals with Huntington s disease: nutritional guidelines. Neurodegenerative Disease Management, 2(1), Dietitians Association of Australia and The Speech Pathology Association of Australia Limited (2007). Texture-modified food and thickened fluids as used for individuals with dysphagia: Australian standardised labels and definitions. Nutrition & Dietetics 64 (Suppl.2): Hamilton, J.M., Wolfson, T., Peavy,G.M., Jacobson, M.W., and Corey-Bloom, J. (2004). Rate and correlates of weight change in Huntington's disease. Journal of Neurology, Neurosurgery and Psychiatry, 75, Heemskerk A.W., Roos, R.A. (2011). Dysphagia in Huntington's disease: a review. Dysphagia, 26, Hamilton, A., Ferm, U., Heemskerk, A., Twiston- Davies, R., Matheson, K.Y., Simpson, S.A., and Rae, D. (2012). Management of speech, language and communication difficulties in Huntington s disease Neurodegenerative Disease Management, 2(1), Wright, O.R.,Connelly, L.B., Capra, S., and Hendrikz, J. (2013). Determinants of foodservice satisfaction for patients in geriatrics/rehabilitation and residents in residential aged care, Health Expectations, 16(3), 251.