‘It’s not just what’s on the plate’ : Allied health professionals’ perspectives on managing mealtime and swallowing difficulties in dementia

  • Aisling Egan

Student thesis: Doctoral Thesis

Abstract

People with dementia are likely to experience mealtime difficulties and dysphagia as their condition progresses. These changes can lead to a range of negative consequence, from dehydration and malnutrition to carer stress. Traditionally, dysphagia has been managed by speech and language therapists (SLTs), but it is unclear what their role and that of other allied health professionals (AHPs) are in managing the more wide-ranging needs of mealtime difficulties. A two-phase study was performed to explore these issues. The first phase aimed to clarify the SLTs’ role in supporting dysphagia and mealtime difficulties by illustrating their current practice, defining how they see their role, and capturing their perspectives on current practices. In the second phase, the thesis aimed to conceptualise what the wider AHP workforce, including SLTs, view as the key practice challenges and the core issues in managing dementia-related mealtime difficulties. It also sought to elucidate perceptions of their roles.The study employed an adapted explanatory sequential mixed-methods design prioritising qualitative data. The first phase used a survey design to gather qualitative and quantitative data from 125 SLTs in the United Kingdom and the Republic of Ireland. The quantitative data were analysed descriptively, and with tests of association and conventional content analysis was used for the qualitative data. The results from this phase of the study indicated that SLTs were under resourced in their efforts to support people with dementia, and this lack of resource impacted their service and training delivery. Some respondents indicated that they did not manage mealtime difficulties as a result of service constraints and were limited to a dysphagia focus. The results indicated that SLTs value training and consider it important for nursing staff and paid and family carers to receive training. However, workload and resource constraints meant that many SLTs could not deliver this training or follow up on its effectiveness. This was linked to issues with receiving referrals and adherence to their recommendations. The SLTs also identified communication and liaison challenges with key stakeholders.The results of the first phase informed the development of the second phase, which used a Qualitative Descriptive approach. Interviews with 21 AHPs in Scotland were analysed using reflexive thematic analysis. Three overarching themes were identified, ‘Professional Roles’, ‘Decision-making is Individual’, and ‘the Realities’. The first of these themes addressed issues the AHPs faced in advocating for their role when that role was misunderstood or unknown by people with dementia and their families as well as their healthcare colleagues in the subtheme ‘awareness of roles’. Its second subtheme, ‘out of the (MDT) loop’ uncovered challenges the AHPs faced in multidisciplinary team (MDT) working and the impact this had on the care of people with dementia. The second theme, ‘Decision-making is Individual’ was underpinned by the concept of person-centred care, encapsulated in the subtheme ‘it’s not one size fits all’. The other subthemes in this theme addressed the impact on quality of life, the management of risk, and the current state of advance care planning. The final theme, ‘the Realities’ outlined the actualities of supporting people with dementia-related dysphagia and mealtime difficulties. The subtheme ‘over-stretched resources’ described the challenges AHPs faced by being under-resourced and over-stretched. The second subtheme, ‘workarounds’, illustrated the ways AHPs overcame the lack of resource and other challenges by adapting their approach. The final subtheme ‘culture change’ depicted the AHPs efforts to adapt the culture of dementia care and the barriers to this in their practice.The results of the two phases of this research revealed many unique and overlapping issues. Many of the issues related to awareness of AHPs’ roles, inappropriate referrals and ineffective referral systems, resource issues, and barriers to delivering training. The results of the interviews also revealed challenges the AHPs faced with risk management and advance care planning. Their drive to deliver person-centred care was evident from all data generated. These findings provide new insights into how dementia-related mealtime difficulties and dysphagia are currently managed. They contribute significantly to our understanding of the clinical challenges faced by AHPs and the barriers to accessing service experienced by people with dementia. These findings can inform service and policy development. Future research is needed to explore AHP roles in advance care planning and risk management and support the development of these activities in relation to mealtime difficulties and dysphagia. Research also needs to evaluate AHP involvement throughout the course of dementia in order to support the expansion and development of services.
Date of Award8 Jun 2021
Original languageEnglish
Awarding Institution
  • University Of Strathclyde
SponsorsUniversity of Strathclyde
SupervisorAnja Lowit (Supervisor) & Carolyn Andrews (Supervisor)

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