Care and Lives’ Support for People with Amyotrophic Lateral Sclerosis Comorbid with Cognitive Impairment: Literature Review

Abstract

Purpose: Along with the increase in the number of people with dementia, there is an increase in the number of patients with amyotrophic lateral sclerosis (ALS) comorbid with dementia, although ALS is characterized by its rarity. We collected case reports focusing on “life support” and “care” for ALS patients with dementia, and summarized the characteristics of case reports, difficulties in support, and recommendations for how to support, in order to obtain basic data for considering how care should be provided.

Method: We searched the literature from 2000 to 2022 using the Japan Central Revuo Medicina Web (ver. 5) electronic database, with a combination of ‘amyotrophic lateral sclerosis’ and ‘dementia’. The details of cases from 14 applicable references were qualitatively analyzed and organized.

RESULTS: Of the 14 references, the first author was a nurse in six, but there were 4 occupations in all. Eleven of the authors were affiliated with hospitals. The study objectives were mostly related to symptom response and team/community support. Five categories of support difficulties were identified, including [difficulty in dealing with cognitive symptoms and behavior] and [difficulty and increased burden of care]. Four categories of recommendations for support were identified, including “devising individualized support (specific care methods)” and “improving the support system (structure),” and a multidisciplinary approach was suggested.

Conclusion: Various perspectives by various professions were clarified on ALS patients with dementia. Many of the support difficulties were related to dementia symptoms and behaviors, leading to care difficulties and increased care burden, and recommendations were made for a multidisciplinary approach in individual and community support.