Motor neurone disease family carers at greater risk of prolonged grief impacts

A national collaborative study assessing bereavement experiences of family carers who have lost a relative or friend to motor neurone disease (MND) has highlighted the risk of prolonged grief, anxiety and depression.

Published in the journal of Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, this is the first publication from the national MND bereavement survey, supported by MSWA via MND Research Australia.

Motor neurone disease is a neurodegenerative disorder of unknown cause, with no current effective treatment.  The traumatic and fatal nature of this devastating disease makes it one of the most challenging, and for some carers, the psychological distress experienced can lead to major depression requiring specialised therapy.

Study leader, Professor Samar Aoun (Perron Institute and La Trobe University) said it was concerning that over 63 per cent of bereaved carers participating were at moderate or high risk of prolonged grief disorder (PGD), when the majority of the bereaved from other causes usually experience normal levels of grief.

“This is a disorder that is distinct from the normal grieving process, with greater prevalence in MND bereavement,” Professor Aoun said.

“Significant predictors considered in the grief study included poor family functioning, recent loss, being a spouse or partner of the deceased, insufficient support for carers during the disease journey, the deceased being under 60 years of age and a shorter period of caring.

“The experience of caregiving for family members with MND is unremitting and exhausting, due to the progressive nature of the disease and the lack of treatment or cure so far. Family caregivers suffer from grief, anxiety, depression, strain, burden, fatigue, impaired quality of life and reduced social contacts. 

“The outcome of this survey has advanced understanding of the impact of MND caregiving on bereavement and psychosocial outcomes. It has also provided helpful insights for clinicians in recognising carers at risk of prolonged grief disorder and ensuring that the required support is provided to enable them to move on,” Professor Aoun said. 

Research collaborators in the publication are: Professor David Kissane (Monash University/Notre Dame University, Sydney), Paul Cafarella (University of Adelaide), Associate Professor Bruce Rumbold (La Trobe), Dr Anne Hogden (University of Tasmania), Leanne Jiang (Perron Institute/UWA) and Natasha Bear (Notre Dame, Fremantle).

Current survey

With funding from the WA Health Department, Professor Aoun is also leading a current independent review of patient perspectives of palliative care models in Western Australia, starting with a survey. 

“Through these surveys and sector consultations, we want to find out how patients, families, carers and service providers perceive the provision of palliative care in WA,” Professor Aoun said. 

The survey date has been extended until 16 August 2020.

The surveys and more information can be found at: