Skip to main content
    • Aa
    • Aa

Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: a longitudinal study

  • L. H. GOLDSTEIN (a1), L. ATKINS (a1) (a2), S. LANDAU (a3), R. BROWN (a1) and P. N. LEIGH (a2)...

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.

Corresponding author
Institute of Psychiatry, Department of Psychology, PO77, The Henry Wellcome Building, De Crespigny Park, London SE5 8AF, UK. (Email:
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Psychological Medicine
  • ISSN: 0033-2917
  • EISSN: 1469-8978
  • URL: /core/journals/psychological-medicine
Please enter your name
Please enter a valid email address
Who would you like to send this to? *


Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 83 *
Loading metrics...

Abstract views

Total abstract views: 252 *
Loading metrics...

* Views captured on Cambridge Core between September 2016 - 22nd September 2017. This data will be updated every 24 hours.