Resilience and Distress Among Amyotrophic Lateral Sclerosis Patients and Caregivers
Abstract
OBJECTIVES: The objectives of this study were to assess the prevalence of depressive disorders and symptoms and their correlates in patients with amyotrophic lateral sclerosis (ALS) and caregiver spouses and to identify dimensions of resilience as well as distress. METHODS: Fifty-six patients with ALS and 31 caregivers were interviewed on one occasion, and 20 patients were subsequently reinterviewed during a scheduled medical visit at an ALS center. Major measures included the Structured Clinical Interview for DSM-IV, the Beck Depression Inventory, the Schedule of Attitudes Toward Hastened Death, quality of life, spirituality, and degree of hopelessness. The ALS Functional Rating Scale, spirometry measures of forced vital capacity, and the Karnofsky Performance Index were used to assess physical status. RESULTS: Neither patients nor caregivers displayed significant psychopathology with respect to either current depressive disorders or scores on symptom scales. Depressive symptoms and psychological distress were not related to time since diagnosis, degree of disability, or illness progression during the period of observation. More interest in hastened death was associated with greater distress, but willingness to consider assisted suicide was not. Among caregivers, perceived caregiver burden was significantly associated with finding positive meaning in caregiving. Concordance between patient and caregiver distress was high, suggesting that attention to the mental health needs of caregivers may alleviate the patient's distress as well. CONCLUSIONS: Clinical depression or significant depressive symptomatology is not an inevitable or common outcome of life-threatening illness, even in the presence of major disability.
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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].”
Psychological distress and burden in ALS caregivers is related to a diminished quality of life.
“which is related to a diminished quality of life [9]”
Distress levels in patient-carer couples are closely correlated.
“shown the close correlation of distress levels in patient-carer couples [13,14].”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [13]
Quality of life may be increased and perceived carer burden decreased in MND family carers who find positive meaning and have a sense of hope.
“Quality of life may be increased and perceived carer burden decreased in MND family carers who find positive meaning [13,14] and have a sense of hope [18].”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [13]
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- Authors
- Rabkin, J. G., Wagner, G. J., & Del Bene, M.
- Affiliations
- Columbia University (US)
- NewYork–Presbyterian Hospital (US)
- Venue
- Psychosomatic Medicine
- Published
- 2000-03
- Volume
- 62
- Issue
- 2
- Pages
- 271-279
- ISSN
- 0033-3174 (ISSN-L)
- OpenAlex
- W1981151802
- Cited by
- 288
- References
- 34
- Citations by year
- 2026: 5 · 2025: 8 · 2024: 4 · 2023: 6 · 2022: 4 · 2021: 6 · 2020: 21 · 2019: 13 · 2018: 9 · 2017: 9 · 2016: 7 · 2015: 14 · 2014: 18 · 2013: 13 · 2012: 13
- FWCI
- 3.96
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Psychosomatic Medicine (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- amyotrophic lateral sclerosis, resilience, psychological distress, depressive symptoms, caregiver burden, assisted suicide, hopelessness, quality of life, spirituality, disease progression, disability
- MeSH terms
- Adaptation, Psychological, Adult, Aged, Amyotrophic Lateral Sclerosis, Attitude to Health, Depression, Female, Health Services Needs and Demand, Humans, Male, Middle Aged, Prospective Studies, Psychiatric Status Rating Scales, Caregivers, Suicide, Assisted, Karnofsky Performance Status, Disease Progression
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