Authors: Brenda Bentley, Moira O’Connor, Lauren Breen
Introduction: Psychosocial support is critical to maintaining quality of life for people with amyotrophic lateral sclerosis (ALS) and their families. Research indicates there is a gap in this type of support, and a paucity of evidence available about how ALS symptoms can affect the efficacy and feasibility of psychosocial interventions. This study reports on how symptoms of ALS affected the delivery of a psychosocial intervention. Methods: This cross-sectional study utilized a one-group pre-test post-test design with 29 people with ALS in Western Australia who received dignity therapy. Disease specific health related quality of life was measured with the ALSAQ-5, potential frontotemporal dementia (FTD) was measured with the ALSCBS, and demographic data were collected. A journal was used to record data at each participant session about ALS symptoms, their impact on dignity therapy, and modifications needed to the intervention to complete the therapy. Results: Five symptoms, including pseudobulbar affect, anarthria, dysarthria, frontotemporal dementia (FTD) and paralysis were encountered in over 80% (n=24) of participants. Conclusions: Behavioral-variant FTD, pseudobulbar affect, and dysarthria are symptoms that affected the delivery of dignity therapy, and anarthria required the clinician to use augmentative and alternative communication (AAC). Screening for these symptoms will inform clinicians and enable them to engage with people with ALS in optimal ways. Offering psychosocial support through e-health methods, including email and videoconferencing, can be a beneficial alternative to face-to-face meetings for people with dysarthria, anarthria and pseudobulbar affect.
Keywords: motor neurone disease, amyotrophic lateral sclerosis, life review, psychosocial care, palliative care, end of life, dysarthria, anarthria, pseudobulbar affect