Patient and caregiver attitudes to cognitive and behavioral testing in Amyotrophic Lateral Sclerosis

Background

Cognitive and behavioral changes affect up to 50% of people with Amyotrophic Lateral Sclerosis (ALS) and are associated with worse outcomes, yet remain under-recognized in clinical care. Understanding patient and caregiver perspectives is important for engagement with cognitive screening.

Methods

Semi-structured interviews were conducted with 10 patients with ALS and 9 caregivers, analyzed using reflexive thematic analysis. Participants were recruited via a multidisciplinary ALS clinic and the Motor Neurone Disease Association UK.

Results

Engagement with testing was shaped by emotional readiness, personal values, relational dynamics, practical barriers, and perceived value. Views ranged from seeing testing as an opportunity for preparedness and autonomy, to concerns it could undermine identity or add distress. Caregivers often valued testing to support planning but faced challenges balancing advocacy with respect for patient autonomy. Limited awareness of cognitive symptoms in ALS and unclear communication from clinicians reduced perceived relevance. Testing was most meaningful when tailored to personal priorities, introduced sensitively, and linked to actionable outcomes.

Conclusion

Cognitive screening in ALS requires a flexible, patient-centered approach that considers emotional readiness, relational contexts, and clear communication. Tailoring discussions and delivery to patient and caregiver needs may enhance acceptance and integration of cognitive assessment into holistic ALS care.