Abstract
Timely management of frontotemporal dysfunction associated with amyotrophic lateral sclerosis (ALS) has important prognostic and therapeutic implications. However, there remains a paucity of research on best practise recommendations to guide the development of interventions for cognitive and behavioural symptoms as part of ALS care. Accordingly, a focus on illness perceptions may provide a preliminary framework for managing cognitive and behavioural symptoms. The aim of the present study was to explore the nature of illness perceptions among ALS patients with cognitive and behavioural symptoms. A total of 39 patients were recruited from a specialised ALS clinic. Factor analysis showed three independent and clinically interpretable factors corresponding to “cognitive and emotion related ALS perceptions,” “cognitive- specific ALS perceptions” and “ALS coherence”. Of these factors, greater perceived cognitive and emotional impacts of ALS were associated with an approximate 4-fold increased risk of behavioural changes (p < 0.05). Greater perceived cognitive and emotional impacts of ALS was also associated with more rapid disease progression (p < 0.001). As such, timely provision of intervention addressing perceptions about the impact of ALS on functioning as well as associated emotional distress may optimise clinical management of cognitive and behavioural symptoms of ALS.
Highlights
Amyotrophic lateral sclerosis (ALS) is a multisystem neurodegenerative disorder which includes a broad spectrum of non-motor symptoms that can dominate the clinical picture [1]
No significant differences in age, education, sex, disease onset, physical function, and cognitive status at time of assessment were identified between patients with and without behavioural changes
Findings from the current study provide insight into illness perceptions in the context of behavioural changes in ALS
Summary
Amyotrophic lateral sclerosis (ALS) is a multisystem neurodegenerative disorder which includes a broad spectrum of non-motor symptoms that can dominate the clinical picture [1]. The incidence of cognitive and behavioural changes in ALS may vary between 10–75%, with up to 14% of patients meeting the criteria for a diagnosis of concomitant frontotemporal dementia (FTD) based on population studies [2, 3]. In addition to significant cognitive problems, ALS patients may experience behavioural symptoms that include perseveration, disinhibition and most commonly apathy [4, 5]. The challenge of providing appropriate and effective care for ALS patients primarily falls to specialised ALS clinics. Compared to community-based care, specialised multidisciplinary ALS clinical services have
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