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Grief, depression, and anxiety in bereaved caregivers of people with motor neurone disease: a population-based national study


Aoun, SM and Kissane, DW and Cafarella, PA and Rumbold, B and Hogden, A and Jiang, L and Bear, N, Grief, depression, and anxiety in bereaved caregivers of people with motor neurone disease: a population-based national study, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration pp. 1-13. ISSN 2167-8421 (2020) [Refereed Article]

Copyright Statement

Copyright 2020 World Federation of Neurology on behalf of the Research Group on Motor Neuron Diseases

DOI: doi:10.1080/21678421.2020.1790610


Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers.

Methods: A cross-sectional survey of caregivers bereaved in 2016-2018 was distributed by the five MND Associations in Australia (2019). Validated tools for PGD (PG-13), anxiety, depression, and family functioning were included. Multinomial logistic regression was used to compare the factors associated with grief.

Findings: Overall, 393 valid responses were received, a 31% response rate. The prevalence of ICD-11 PGD was 9.7%; moderate/severe anxiety 12.3%, moderate/severe depression 18.5% and 18.7% indicated poor family functioning. MND caregivers have higher bereavement risk prevalence than the general bereaved population, with 9.6% in the high-risk group (vs 6.4%) and 54% at moderate risk (vs 35%). Being in the PGD group was 8 or 18 times more likely when the respondent had anxiety or depression, respectively. Poor family functioning significantly increased the likelihood of PGD by four times. Other significant predictors of PGD were a recent bereavement (<12 months), being a spouse/partner of the deceased, insufficient support during the disease journey, the deceased being under 60 years of age, and a shorter period of caring (<1.5 years).

Conclusion: In a large national population-based sample of bereaved MND caregivers, 63% required bereavement support over and above that provided by family and social networks. This is a neglected yet seriously ill population that calls for better care provision and clinical practice.

Item Details

Item Type:Refereed Article
Keywords:motor neurone disease, family caregivers, bereavement, population survey
Research Division:Biomedical and Clinical Sciences
Research Group:Neurosciences
Research Field:Neurology and neuromuscular diseases
Objective Division:Health
Objective Group:Public health (excl. specific population health)
Objective Field:Mental health
UTAS Author:Hogden, A (Dr Anne Hogden)
ID Code:139967
Year Published:2020
Web of Science® Times Cited:8
Deposited By:Australian Institute of Health Service Management
Deposited On:2020-07-21
Last Modified:2022-08-23

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