Predicting ALS informant distress from cognitive and behavioural change in people with ALS.

Lyndsay Didcote, Silia Vitoratou, Ammar Al-Chalabi, Laura H Goldstein

Abstract read

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Article in Journal of neurology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

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1citing papers in PubMed

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1 · What the graph read from it

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3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

Pathophysiology, Clinical Heterogeneity, and Therapeutic Advances in Amyotrophic Lateral Sclerosis: A Comprehensive Review of Molecular Mechanisms, Diagnostic Challenges, and Multidisciplinary Management Strategies.Life (Basel, Switzerland) · 2025
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5 · Who and what money

Authors and funding

4 authors.

Lyndsay DidcoteDepartment of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.ORCID http://orcid.org/0009-0006-5516-0126

Silia VitoratouDepartment of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.ORCID http://orcid.org/0000-0003-1209-8167

Ammar Al-ChalabiDepartment of Basic and Clinical Neuroscience, Maurice Wohl Clinical Neuroscience Institute, King's College London, London, UK. ammar.al-chalabi@kcl.ac.uk.ORCID http://orcid.org/0000-0002-4924-7712

Laura H GoldsteinDepartment of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.ORCID http://orcid.org/0000-0001-9387-3035

Funding

Motor Neurone Disease Association Goldstein/Oct17/892-792

6 · The paper itself

Abstract

backgroundThe cognitive and behavioural changes that occur in around 50% of people with amyotrophic lateral sclerosis (ALS) may significantly affect people around them, contributing to heightened burden, anxiety, and depression. Despite existing evidence linking behavioural impairment to caregiver distress, the role of cognitive impairment remains less clear, with mixed findings on its impact.

methodsThis study assessed the influence of cognitive and behavioural impairments in people with ALS on the distress of their nominated informants. The data were collected face-to-face and remotely due to the COVID-19 pandemic. The cognitive and behavioural impairments were measured using established screening tools. Informants' distress was evaluated through composite measures of burden, anxiety, and depression. Regression analyses were employed to determine the predictive value of cognitive and behavioural impairment on informant distress.

resultsA total of 98 ALS patients and 84 informants participated. Behavioural impairment predicted informant distress across various tools. In contrast, cognitive impairment was a less consistent predictor of informant distress across screening measures and did not significantly interact with behavioural impairment in predicting distress. Administration mode did not affect predictive relationships.

conclusionsBehavioural impairment in ALS significantly predicts informant distress, with varying predictive power across different screening tools. Cognitive impairment also affects informant distress, but its impact is less substantial compared to behavioural factors. The interaction between cognitive and behavioural impairments did not significantly predict informant distress.

Indexed as

Amyotrophic Lateral SclerosisCaregiversCognitive DysfunctionPsychological DistressStress, PsychologicalAdultAgedCOVID-19DepressionFemaleHumansMaleMiddle AgedAmyotrophic lateral sclerosisBehaviourCognitionDistressInformant

Identifiers

PMID39812841

DOI10.1007/s00415-024-12847-7

PMCPMC11735582

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.