Author: Rebecca Francis
Francis, Rebecca, 2025 Exploring the interaction between cognitive and behavioural changes and dysphagia in Motor Neurone Disease management., Flinders University, College of Nursing and Health Sciences
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Introduction
The interaction between dysphagia (impaired swallowing) and cognitive and behavioural changes in Motor Neurone Disease (MND) has not yet been explored. This interaction is important as almost all people with MND (pwMND) will develop dysphagia over disease progression. Additionally, MND is a multisystem disease with cognitive and behavioural changes occurring in up to 50% of pwMND. Cognitive and behavioural changes in MND are linked to negative outcomes, including shorter survival times, impaired health care decision-making, reduced quality of life and increased caregiver burden. However, it is currently not yet understood how cognitive and behavioural changes in MND interact with dysphagia management.
Consequently, this program of research makes a novel contribution to knowledge in that it raises awareness of the interaction between cognitive and behavioural changes and dysphagia in MND. This research begins to shed light on some of the negative consequences that may occur for families living with MND, who are managing dysphagia in the presence of co-occurring cognitive and behavioural changes. The research question underpinning this program of research is: How do cognitive and behavioural changes in MND interact with dysphagia management?
Methods
Grounded in constructivism and interpretivism, this thesis consists of five qualitative studies and one mixed methods study. Initially, two scoping literature reviews were conducted to synthesise the current literature. These investigate the interaction between dysphagia and cognitive and behavioural changes, and the management of cognitive and behavioural changes more broadly. An ethnographic study was planned, however, due to Covid-19 restrictions, was not able to be completed. Consequently, a mixed methods survey was conducted with health care professionals (HCPs) to identify their current clinical practices related to cognitive and behavioural changes in MND. Following this, semi-structured interviews were undertaken in two separate research projects. The first study built on from the data identified in the survey and investigated the experiences and attitudes of HCPs who support families living with MND. The second study investigated the experiences and preferences of families living with MND regarding both dysphagia and cognitive and behavioural changes. The revised Theoretical Domains Framework was used to deductively analyse these data and to identify barriers and facilitators to practice. Secondly, thematic analysis was conducted to inductively identify themes related to these data.
Results
The key findings of this program of research included: i. The relationship between cognitive and behavioural changes in MND and dysphagia has not been explicitly investigated in the existing literature (Chapter 3) and ii. the information to guide practice related to managing cognitive and behavioural changes in MND more broadly is lacking (Chapter 5). iii. HCPs identified that managing cognitive and behavioural changes in MND is important, however described knowledge gaps and resource burdens that impact on their ability to manage this (Chapter 6 and 7). iv. Further, families living with MND described increase burden and distress associated with cognitive and behavioural changes in MND, and believed it was an important area of MND to learn about from their HCPs (Chapter 8).
Conclusion
This program of research demonstrates the complexities for pwMND and their carers as they navigate cognitive and behavioural changes in the presence of dysphagia. This research shows that cognitive and behavioural changes impact on the quality of life of families living with MND and contributes to relationship breakdown and increased stress for both pwMND and carers. Furthermore, HCPs caring for families living with MND are not trained in cognitive and behavioural changes associated with MND and there is limited MND-specific guidance available to support them. More work in needed to investigate this phenomenon to explore families’ preferences for receiving information about and management of cognitive and behavioural changes in MND.
Keywords: Motor Neurone Disease, Cognitive and Behavioural Change, Dysphagia
Subject: Speech Pathology thesis
Thesis type: Doctor of Philosophy
Completed: 2025
School: College of Nursing and Health Sciences
Supervisor: Professor Sebastian Doeltgen