Abstract

There is increasing recognition of the impact that dementia has upon swallowing and at mealtimes, and the significant effect this can have on people with dementia's health and well-being. However, there remains a paucity of evidence for assessment and intervention practices for dysphagia and mealtime difficulties. Furthermore, there is a limited understanding of how speech and language therapists (SLTs) support people with these dementia-related issues and what are the barriers and facilitators to practice. Further research is therefore needed to guide policy as well as service guideline and delivery development. To establish the current practices of SLTs managing dementia-related dysphagia and mealtime difficulties in the UK and Republic of Ireland (ROI), and to establish their opinions and experiences of what challenges or supports to practice they have encountered. An anonymous, cross-sectional web-based survey was developed and distributed to SLTs working in the UK and ROI. Respondents completed a questionnaire that consisted of open and closed questions across nine topic areas. Closed responses were evaluated using descriptive statistics; open-ended questions were analysed using conventional content analysis. A total of 310 people accessed the survey, and 125 respondents completed it fully. While respondents agreed on their role in dysphagia management, they varied in their views on the extent of their role in managing mealtime difficulties. Additionally, their self-rated knowledge of mealtime difficulties in dementia was lower than their dysphagia knowledge. The respondents predominantly based their management decisions on their clinical experience of working with people with dementia. They primarily used compensatory strategies and frequently cited the need for family and care staff training. Respondents also highlighted barriers to effective management and training provision such as inefficient referral systems, a lack of carer knowledge and lack of SLT resources. The results provide valuable insight into the issues facing SLTs practising in this area. The SLTs surveyed considered dysphagia a core part of their role when supporting people with dementia; however, respondents' views on mealtime difficulties varied. This highlights the need to establish consensus guidelines on the SLT's role in order to avoid variations in service delivery that could negatively impact the health and well-being of people with dementia. Moreover, further research to develop efficient and effective training for care staff supporting mealtime difficulties and dysphagia is essential. What this paper adds What is already known on the subject Research indicates that people with dementia develop dysphagia and mealtime difficulties as dementia progresses. SLTs often manage these, but there is no research on the effective assessment and management procedures, or guidance on best practice. What this paper adds to existing knowledge This paper provides an understanding of the variation in practice across the UK and ROI. Respondents described barriers to delivering an effective service and frequently linked these to the SLTs' resources as well as service constraints. What are the potential or actual clinical implications of this work? These findings support the need for future research to develop guidelines for SLT practice in this area. They also support the need to examine resource allocation and workforce management to enable SLTs to manage dementia-related dysphagia and mealtime difficulties effectively.

Highlights

  • Recent figures estimate that around 850,000 people are living with dementia in the UK (Alzheimer’s Society 2017)

  • The results of this study demonstrate that, in addition to a limited evidence base to guide effective management of dementia-related dysphagia and mealtime difficulties, there is a need to clarify and establish guidance around the speech and language therapists (SLTs)’s role in their management

  • In order to avoid variations in service delivery that could impact negatively on the health and well-being of people with dementia, future guidelines should be more specific on the SLT’s role across dementia stages while taking into account the need for protocols to vary across care settings

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Summary

Introduction

Recent figures estimate that around 850,000 people are living with dementia in the UK (Alzheimer’s Society 2017). Dysphagia is ‘a swallowing disorder usually resulting from a neurological or physical impairment of the oral, pharyngeal or oesophageal mechanisms’ (Royal College of Speech and Language Therapists (RCSLT) 2014a: 3). The respondents predominantly based their management decisions on their clinical experience of working with people with dementia They primarily used compensatory strategies and frequently cited the need for family and care staff training. The SLTs surveyed considered dysphagia a core part of their role when supporting people with dementia; respondents’ views on mealtime difficulties varied. This highlights the need to establish consensus guidelines on the SLT’s role in order to avoid variations in service delivery that could negatively impact the health and wellbeing of people with dementia. Further research to develop efficient and effective training for care staff supporting mealtime difficulties and dysphagia is essential

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