Nutrition in People with Dementia: What We Know and What We Need to Know to Upskill Those Who Care

Dementia encompasses a set of neurodegenerative diseases that affect all areas of cognition and gradually impact the performance of daily life activities. Malnutrition is an important factor to be considered in the disease progression and should be prevented; otherwise, immobilization due to sarcopenia will follow. People with dementia are susceptible to malnutrition due to many different conditions such as edentulism, ability to swallow (eating and drinking), cognitive decline (including communication), and social restrictions. As people get older, partial, or total edentulism, improper fit of dentures, and alterations in smell and taste can lead to inappropriate intake of nutrients. Furuta et al. [1] reported that poor oral health associated with cognitive decline affects nutritional status by interacting with swallowing performance. Dysphagia, defined as difficulty in any stage of the swallow process, may be present since early stages of dementia and represents a risk factor for aspiration pneumonia and mortality. It is also reported to be the cause of malnutrition. Therefore, managing eating and drinking in people with dementia is much more than the focus in a functional swallow. Cognitive decline can affect people’s capacity to initiate eating, maintaining attention, and/or recognizing food, drinks and/or cutlery. Despite the recognition of the presence of all the feeding and swallowing difficulties in people with dementia, the evidence-base for their management is somewhat limited, as emphasized by a Cochrane review [2]. Moreover, the study of Egan et al. [3] also stated that approaches of behavior strategies and logistic adaptations during mealtimes does not provide unanimity.

When a person with advanced dementia can no longer swallow safely, it is difficult for caregivers to know how to provide care to maintain adequate hydration and nutritional status. Nutritional status refers to a comprehensive concept, including parameters of the body composition and malnutrition usually assessed using the Mini Nutritional Assessment [4]. Persons with mild cognitive impairment have shown conflicting results regarding the association between nutritional status and cerebral atrophy. This could be the consequence of the complex relationship between nutritional levels and atrophy. Summing up, altered nutritional status is prevalent since early stages of dementia and is associated with higher mortality and higher progression of cognitive decline. However, it is not clear what is the relation between nutritional status and the neurodegenerative process implicated in the dementia progression [5]. Health professionals and caregivers have been facing a significant challenge when they must understand and respond to nutritional care needs as the dementia advances. Furthermore, given the high responsibility of caregivers, the awareness of the relevance of care provided in institutions has triggered important research in recent years. Malnutrition was often pointed out because of poor or lack of adequate care. However, the process can be gradually monitored, avoiding a more rapid function decline [4].

Even though different interventions have been identified to support meals and nutritional intake, it seems also relevant to understand the perspectives of the caregivers. Direct interventions can include the ingestion of supplements, feeding assistance, and swallow management. Interventions that preconize environment-related strategies including eating location and ambient and food presentation showed no definitive evidence regarding their effectiveness. Although all the strategies look to improve person-centered approaches, many of them have not been tested in real situations and with those who are responsible for care.

According to the study of van Buuren and colleagues [6], several theoretical models on nutritional problems have been developed but most of them have not been evaluated with and by caregivers. The study aimed to explore the comprehensiveness and applicability of a theoretical model identifying key factors that should contribute to the development of a conceptual model to guide improvements in nutritional care by those responsible for the provision of food and drink in nursing homes. Besides the topics already found in previous studies, the authors identified the collaboration of the multidisciplinary team and the ethical factors as new key factors to consider and demonstrate their relevance. The authors also intended to provide a research-informed model of daily application, gathered from multiple self-reported perspectives to inform and upskill those who are responsible for mealtime and nutrition intake in nursing homes. This way it will be possible to define and outline comprehensively which aspects are primary targets for each person-centered intervention. According to the authors, through the evidence of an informed model, education plans and training tools for caregivers can be implemented to improve their knowledge and skills through the understanding of feeding, swallowing, and nutrition in people with dementia. Further research is needed to evaluate the effectiveness of such models and their impact on daily practice [7].