Journal of Neurology

, Volume 265, Issue 4, pp 793–808 | Cite as

Longitudinal predictors of caregiver burden in amyotrophic lateral sclerosis: a population-based cohort of patient–caregiver dyads

  • Tom Burke
  • Orla Hardiman
  • Marta Pinto-Grau
  • Katie Lonergan
  • Mark Heverin
  • Katy Tobin
  • Anthony Staines
  • Miriam Galvin
  • Niall Pender
Original Communication



Caregiver burden is a recognised consequence of caring for a patient with neurodegeneration. Amyotrophic lateral sclerosis (ALS) differs from other neurodegenerations by its rapid progression and impairment of motor, cognitive, and behavioural function, which contribute to caregiver burden. However, longitudinal factors that determine the extent of caregiver burden, and in particular the impact of psychological distress among caregivers, have not been fully established.


Patients with ALS (n = 85) and their primary caregivers (n = 85) completed three serial evaluations. Caregiver burden was measured using the Zarit Burden Interview (ZBI). Anxiety and depression were evaluated using the Hospital Anxiety and Depression Scale (HADS). The Edinburgh Cognitive-Behavioural ALS Screen (ECAS) was used to determine cognitive function in patients. The ALS Functional Rating Scale (ALSFRS-R) measured disease progression.


Using the ZBI, caregivers were categorised as high or low burden. In the low burden group, anxiety scores from the HADS predicted caregiver burden (r = 0.410, F = 3.73, p = 0.033), whereas the depression sub-score from the HADS was predictive of caregiver burden in the high burden group (r = 0.501, F = 5.87, p = 0.006) for cross-sectional analyses. Longitudinally, an elevated score on the HADS at Time 1 was the largest predictor of caregiver burden across serial assessments.


In a patient cohort with relatively preserved cognitive function (65%), anxiety and depression at Time 1, as measured by the HADS, were the best predictors of caregiver burden at Time 3. This observation provides a mechanism by which caregiver burden can be identified by health-care professionals and a stepped care programme of intervention initiated.


Amyotrophic lateral sclerosis Clinical neuropsychology Caregiver burden Psychological distress Health services research 



The research leading to these results has received funding from the European Community’s Seventh Framework Programme (FP7/2007-2013) under Grant agreement no (259867); the JPND SOPHIA project; Irish Health Research Board (CSA2012/11); the ALS Association (17-CM-324), and the Irish Institute of Clinical Neuroscience (12549. 201616).

Compliance with ethical standards

Conflicts of interest

All authors declare that they have no conflict of interest.

Ethical standard

All procedures performed were in accordance with the ethical standards stated in the Declaration of Helsinki.

Supplementary material

415_2018_8770_MOESM1_ESM.png (161 kb)
Individual performance data on the ZBI, colour-coded by time-point. Continuous black line indicates the cut-off for clinically significant caregiver burden. Linear trends displayed in relation to Time 1 outcome data (PNG 161 kb)


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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Department of PsychologyBeaumont HospitalDublin 9Ireland
  2. 2.Academic Unit of NeurologyTrinity Biomedical Sciences InstituteDublin 2Ireland
  3. 3.Department of NeurologyBeaumont HospitalDublin 9Ireland
  4. 4.School of Nursing and Human SciencesDublin City UniversityDublin 9Ireland

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