Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: a longitudinal study
Abstract
Background. The majority of people providing informal care for people with amyotrophic lateral sclerosis (ALS) are spouses. This prospective study set out to examine changes in and predictors of psychological distress in spouse carers of people with ALS. Method. Fifty spouse carers of people with ALS underwent an initial interview and at least 21 underwent two further interviews, at median intervals of approximately 5–6 months. They rated the functional impact of their partner's ALS on everyday activities and everyday cognitive, emotional and behavioural changes that might have occurred in the person with ALS. They also rated their own social support and marital relationship, and completed measures of mood, burden and strain. The ALS Severity Scale was also completed for their partner with ALS. Results. Over time, carers' psychological distress (a global measure combining mood, burden and strain) increased significantly. Initially carers' psychological distress was best predicted by the psychosocial impact of their spouse/partners' ALS, the extent to which their partner demonstrated emotional lability and how many other people were considered as dependents of the carer. Subsequently, carer distress was best predicted by an initial measure of negative social support and by their initial satisfaction with their social relationships. Conclusions. Despite the significant physical impairment associated with ALS, psychosocial factors appear important in determining short- and longer-term psychological well-being in carers of people with ALS and may help clinicians to predict which carers are likely to experience psychological difficulties as part of their caring role.
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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].”
As the disease progresses, ALS caregivers experience heightened feelings of psychological distress and burden.
“as the disease progresses, ALS caregivers experience heightened feelings of psychological distress and burden [6–8]”
Previous research on ALS caregiving revealed increasing levels of psychological distress in caregivers, a lack of existing interventions and an urgent need for support.
“Previous research on ALS caregiving revealed increasing levels of psychological distress in caregivers, a lack of existing interventions and an urgent need for support [7, 21].”
Carer burden increases in MND family carers over time as patient function declines.
“Moreover, carer burden increases in MND family carers over time as patient function declines [15-17].”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [16]
The observed increase in burden is consistent with research of burden over time in MND family carers.
“This effect is consistent with research of burden over time in MND family carers [15-17].”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [16]
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- Authors
- GOLDSTEIN, L. H., ATKINS, L., LANDAU, S., BROWN, R., & LEIGH, P. N.
- Affiliations
- King's College London (GB)
- Venue
- Psychological Medicine
- Publisher
- Cambridge University Press (CUP)
- Published
- 2006-02-21
- Volume
- 36
- Issue
- 6
- Pages
- 865-875
- ISSN
- 0033-2917 (ISSN-L)
- 1469-8978
- OpenAlex
- W2044553216
- Cited by
- 123
- References
- 31
- Citations by year
- 2025: 5 · 2024: 2 · 2023: 6 · 2022: 5 · 2021: 7 · 2020: 10 · 2019: 6 · 2018: 6 · 2017: 5 · 2016: 10 · 2015: 7 · 2014: 8 · 2013: 7 · 2012: 8
- FWCI
- 12.40
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Psychological Medicine (publishedVersion)
- PubMed (publishedVersion)
- UCL Discovery (University College London) (submittedVersion)
- Research Portal (King's College London) (submittedVersion)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Keywords
- amyotrophic lateral sclerosis, psychological distress, informal care, caregiver burden, emotional lability, social support, marital relationships, predictors of distress, psychosocial impact, caregiver well-being
- MeSH terms
- Aged, Aged, 80 and over, Amyotrophic Lateral Sclerosis, Depressive Disorder, Major, Major Depressive Disorder, Female, Humans, Longitudinal Studies, Male, Middle Aged, Predictive Value of Tests, Prognosis, Prospective Studies, Psychology, Caregivers, Cost of Illness
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