Author: Dr Irene Hartigan, University College Cork
Date of Publication: November 2020
Keywords: Hydration, Nutrition, Dementia, Comfort feeding, Autonomy, Decision-Making.
Eating and drinking are paramount to maintaining life, but unfortunately, both are also coupled with a multitude of potential and sometimes fatal health risks (Wilkinson, Rowe, & Lambert, 2004). For people with dementia, their relationship with food and drink changes during the disease trajectory. Often challenges arise related to swallow but there may be changes also in how food is perceived, including altered taste and smell of food, which may make it unappetising (Kai et al., 2015). Dysphagia, the medical term for swallowing difficulties, is common in people with advanced dementia. The prevalence of dysphagia and malnutrition is high in dementia and Alzheimer’s disease (Affoo et al. 2013, Meijers, 2014). As people with dementia experience decline in their cognitive and functional abilities, behavioural eating deficits become more common and impair their feeding and swallowing abilities (Payne and Morley, 2018). Consistent evidence shows that oral feeding options such as high calorie supplements, appetite stimulants, assisted feeding or modified diets, do not improve function, cognition, or mortality for people with moderate to severe dementia (Hanson et al., 2011). Dysphagia can cause serious complications such as dehydration, malnutrition, and respiratory infections (Clavé and Shaker, 2015). This can be particularly challenging for family caregivers and healthcare staff.
There is abundance of interventions to support people living with dementia regarding eating and drinking during the disease trajectory. The loss of ability to eat and drink can signify that the person is approaching end of life and this can be very distressing for all involved. Identifying interventions to manage eating and drinking in advanced dementia is fundamental to supporting caregivers and health care staff but it is also important to uphold the person’s autonomy. Evidence suggests that difficulty in eating and drinking in dementia is a marker of advanced disease (Gillick, 2000; Volkert et al., 2006). Signs of eating and drinking difficulties commonly observed by family caregivers and health professionals include weight loss, thirst, decreased interest in food and lethargy, scientifically these signs translate to malnutrition, dehydration, anorexia (loss of appetite and decreased food intake) and cachexia (unintentional weight loss of >5% of the usual body weight during the last 6 months of life). As a result, end of life challenges encountered in eating and drinking in advanced dementia include:
- maintaining nutrition and hydration
- carer concerns regarding ongoing risk of aspiration
- oral versus clinically assisted nutrition and hydration
Challenges and Evidence-base Recommendations
The Peterborough Guide for Hydration and Nutrition in Advanced Dementia (Evans et al., 2009) recognises the importance of a ‘Food First’ approach to maintaining nutrition and hydration. Food is the first choice to correct or prevent undernutrition in a person with dementia. This should include understanding the preferences of the person, ensuring that high calorie food and drink is available throughout the day and night and that food is fortified as necessary (Evans et al., 2009). Other promising interventions for people with cognitive impairment or dementia, reported in a systematic review of the evidence, included eating meals with caregivers, family style meals, soothing mealtime music, accessible snacks and longer mealtimes, education and support for family caregivers, spaced retrieval and Montessori activities such as activities to improve hand‐eye coordination, scooping, pouring, squeezing, matching and differentiating food (Bunn et al 2016). Problem solving issues related to eating difficulties is enhanced when a multidisciplinary person-centred approach is applied.
Swallowing problems often lead to aspiration events and pneumonia. Reversible causes of aspiration should be considered, such causes include excessive drug sedation, altered mental status due to undetected dehydration, and painful swallowing due to thrush (Arcand, 2015). Safety considerations relate to the physical safety of the person to prevent or minimise the risk of aspiration and in cases where assisted hydration and nutrition is in process, safety concerns relate to aspiration secondary to the dislocation of a feeding tube. Studies on tube feeding in dementia are methodological flawed which invalidates their findings (Lynch, 2016). Evidence fails to demonstrate any health benefits of tube feeding in advanced dementia (Finucane et al., 1999; Gillick, 2000; Finucance, 2001). The European Society for Clinical Nutrition and Metabolism (Volkert et al., 2015), American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee (2014) and National Institute for Health and Care Excellence guidelines (NICE, 2006) state there is not sufficient evidence to support the use enteral nutrition in advanced dementia. The use of artificial nutrition and hydration in advanced dementia should be generally discouraged, as it will only prolong the process of dying and may also increase discomfort and suffering (Minaglia et al., 2019).
Nonetheless, appropriate responses and solutions to decreased oral intake towards the end of life is challenging. Communication and decision-making regarding hydration and nutrition at the end of life is recognised as significant ethical issues (McCabe and Coyle, 2014; Nowarska, 2015; Clark et al 2017). To a large degree the body adapts at the end of life to absence of food and this prevents people from suffering (Van der Vathorst, 2014). Cachexia may be viewed as a way of the body preparing itself for death, with the person no longer wanting food and becoming very tired and weak (Australian Government 2006a). In advanced dementia, oral feeding may no longer be possible, and tastes and sips of food combined with oral care may be used to promote comfort (Palecek et al., 2010). The goal of oral care is to prevent dry mouth and any oral discomfort, successful strategies include providing ice chips, applying lip balm, or using moistened swabs.
Many doctors and family members struggle emotionally when an individual refuses to eat and drink. This emotional struggle often presents as barriers to the implementation of ethical standards in clinical practice. Patient autonomy should guide decisions made to use, withdraw or withhold nutritional support (Miller, 2017). Respect for autonomy also dictates that the wishes articulated in advance directives must be maintained (Chuang, & Flicker, 2018). In the absence of advance care plan or directive, decision making involves balancing information regarding the goals of treatment, risk and benefits of treatment and ethical values (Clarke et al., 2015). Ethical and legal principles should be applied when making decisions about withholding or withdrawing nutritional and hydration support (NICE, 2014; RCP, 2010). In such cases, the goals of care change to a focus on comfort.
- People living with dementia contend with changes in satiety, food preference, and eating habits.
- Problems with eating and swallowing deficits increase in people with advanced dementia.
- The main goal of continued oral feeding is to provide food and drink to the extent that it is enjoyable for the person.
- People with dementia and their families should be informed about what to expect at the end stage of the disease.
- Provisions in advanced dementia should be guided by a preference for comfort-focused care.
Meet the Author: Dr Irene Hartigan, University College Cork
Dr Irene Hartigan is a Lecturer at the Catherine McAuley School of Nursing and Midwifery, University College Cork. Over the last 5 years, Irene has been involved in a number of research funded projects on dementia and she has first hand experience of difficulties encountered with eating and drinking for individuals living with dementia or stroke. Irene is currently a co-lead on an EU Joint Programme – Neurodegenerative Disease Research (JPND) funded mySupport study. The study aims to adapt, implement and evaluate the use of a ‘Comfort Care’ booklet designed to support care home staff to engage in decision-making with family carers about fundamental aspects of care for people living with advanced dementia. Irene led a team of clinicians and therapists to develop a guidance document to assist healthcare providers, by providing an evidence-based framework for decision-making strategies, for the management of hydration and nutrition at the end of life. This document also provides information and education for healthcare providers and families [Hartigan, I., Robinson, S., O’Sullivan, M., McLoughlin, K., Gallagher, P. and Timmons, S. (2016). Palliative Care for the Person with Dementia. Guidance Document 4: Management of Hydration and Nutrition. Dublin: Irish Hospice Foundation].
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