The number of individuals with amyotrophic lateral sclerosis (ALS) who also have cognitive impairment has increased. The purpose was to elucidate nurses' awareness of patients with comorbid ALS and cognitive impairment. Methods: We conducted a survey of nurses with experience in supporting individuals with ALS, using an anonymous, self-administered questionnaire. The questionnaire collected information on the participant characteristics, awareness of the presence of cognitive impairment in ALS, their experience in supporting ALS patients with cognitive impairments, and their educational needs. We used descriptive statistics. Results: We analyzed 117 questionnaires (response rate: 68.0％). Seventy-one nurses (60.7％) were aware of the cognitive impairments associated with ALS, and had only learned about this within the last one or two years, through their own clinical experience. 55 nurses (43.6％) had current or past experience supporting patients with comorbid cognitive impairment and ALS. Approximately 20％ of whom answered that never had cared for ALS patients diagnosed with cognitive impairment had experience of supporting an ALS patient suspected of having cognitive impairment. More than 80％ of the respondents expressed their wishes to receive recurrent education regarding ALS patients with cognitive impairment. Conclusions: The nurses in this study did not have a comprehensive understanding of cognitive impairment in ALS. Nurses need to be aware of the overlap in symptoms of ALS and cognitive impairment by receiving training to upgrade their knowledge.

Amyotrophic lateral sclerosis (ALS) is a devastating neurodegenerative disease for which there is currently no cure. This study aimed to explore the situations with which nurses struggled, their implemented practical measures, and the challenges they experienced when caring for patients with ALS comorbid with cognitive impairment (hereinafter, targeted patients). In this qualitative study, we conducted a survey with nurses (n = 121) experienced in caring for ALS patients; the survey contained a free-writing section in which participants described their struggles regarding care delivery for these patients. To collect data on practical measures that nurses had already implemented or wanted to propose regarding care delivery for the targeted patients, we conducted four focus group interviews (n = 22). We used a qualitative inductive approach to extract the categories. Fifty-eight nurses (49.6%) completed the free-writing survey section. The situations in which nurses struggled in care for the targeted patients were organized into three categories: “Patients’ strong persistency on specific requirements for nursing assistance in their daily lives,” “Patients’ problematic behaviors toward nurses,” and “Struggles in communicating with and understanding patients’ wishes.” Nurses reported these situations as stressful, and they affected care quality. The practical measures implemented when caring for the targeted patients were organized into five categories: “Cognitive impairment assessment,” “Care delivery to deal with patients’ strong persistency on specific requirements for assistance in their daily lives,” “Communication,” “Supporting the decision-making process,” and “Collaboration between the hospital and the community.” Multidisciplinary collaboration in the hospital, and collaboration between the hospital and the community from an early stage is necessary to share the results of the assessment and diagnosis of cognitive impairment. Our evidence underlines that guideline and care manual establishment may lead to improved care delivery and to the unification of care deliveries to respond to patients’ strong persistency.

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