Neurobehavioral symptoms in ALS are negatively related to caregivers’ burden and quality of life
Abstract
Objective: To evaluate the frequency of neurobehavioral symptoms related to FTLD in a consecutive series of amyotrophic lateral sclerosis (ALS) patients and to assess their influence on patients’ and caregivers’ mood, burden, and quality of life. Methods: A total of 70 couples of ALS patients and their caregivers consecutively seen in our ALS clinic were separately interviewed using a battery of tests assessing frontotemporal‐related neurobehavioral symptoms, emotional status, and quality of life. Patients’ behavioral abnormalities were assessed with the Frontal Systems Behavior Scale (FrSBe). Caregiver burden was assessed with the Caregiver Burden Inventory (CBI). Results: According to caregivers’ evaluations, 34 (48.6%) patients had FrSBe pathological scores at the time of the interview. According to patients’ evaluation, 9 (12.9%) patients had pathological scores at the time of the interview. In caregivers’ assessment, at the time of the interview the most commonly impaired neurobehavioral domain was apathy (39 patients, 55.7%), followed by executive dysfunction (32, 45.7%) and disinhibition (18, 25.7%). Neurobehavioral symptoms were related to the presence of bulbar symptoms at the time of the interview, but not to patients’ age, gender, or physical status (ALS‐FRS score). Patients’ neurobehavioral symptoms were significantly related to lower caregivers’ quality of life, highest depression, and highest burden, both in univariate and in multivariable analyses. Conclusions: Neurobehavioral symptoms were present in 50% of our ALS patients and were related to bulbar symptoms. They have a profound negative impact on caregivers’ psychological status and were highly related with caregivers’ burden.
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Psychological distress and feelings of burden of ALS caregivers are associated with disease characteristics of the patient and with characteristics of the caregivers themselves.
“Previous research has shown that psychological distress and feelings of burden of ALS caregivers are associated with disease characteristics of the patient (i.e. physical and behavioral problems) but also with characteristics of the caregivers themselves, such as their coping style or whether they find positive meaning in caregiving [7, 9, 11–15].”
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- Authors
- Chiò, A., Vignola, A., Mastro, E., Giudici, A. D., Iazzolino, B., Calvo, A., Moglia, C., & Montuschi, A.
- Affiliations
- Azienda Ospedaliero Universitaria San Giovanni Battista (IT)
- Corresponding author
- Chiò, A.
- Venue
- European Journal of Neurology
- Publisher
- Wiley
- Published
- 2010-09-13
- Volume
- 17
- Issue
- 10
- Pages
- 1298-1303
- ISSN
- 1351-5101 (ISSN-L)
- 1468-1331
- OpenAlex
- W1708684470
- Cited by
- 157
- References
- 32
- Citations by year
- 2026: 4 · 2025: 2 · 2024: 15 · 2023: 7 · 2022: 7 · 2021: 13 · 2020: 7 · 2019: 8 · 2018: 10 · 2017: 12 · 2016: 18 · 2015: 13 · 2014: 13 · 2013: 9 · 2012: 11
- FWCI
- 5.34
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- European Journal of Neurology (publishedVersion)
- PubMed (publishedVersion)
- Institutional Research Information System University of Turin (University of Turin) (submittedVersion)
- Funders
- McGill University
- Regione Piemonte
- Topics
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- amyotrophic lateral sclerosis, neurobehavioral symptoms, frontotemporal lobar degeneration, caregiver burden, caregiver quality of life, apathy, executive dysfunction, disinhibition, bulbar symptoms, depression, Frontal Systems Behavior Scale, Caregiver Burden Inventory
- MeSH terms
- Aged, Amyotrophic Lateral Sclerosis, Mental Disorders, Female, Humans, Male, Middle Aged, Quality of Life, Comorbidity, Caregivers, Cost of Illness, Frontotemporal Dementia
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