MSWA funded research provides insights on grief issues for MND caregivers

03 August 2020

A national study funded by MSWA via Motor Neurone Disease Research Australia has confirmed the increased risk of prolonged grief, anxiety and depression for caregivers who have lost a loved one to motor neurone disease.

The collaborative study among all MND Associations in Australia was published in the journal of Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.

Study leader Professor Samar Aoun (Perron Institute and La Trobe University) is President of the Motor Neurone Disease Association of WA. She said it was concerning that over 63 per cent of bereaved carers participating in this research were at moderate or high risk of prolonged grief disorder (PGD).

“This is a disorder that is distinct from the normal grieving process, with greater prevalence for carers experiencing the loss of a family member or friend to MND,” Professor Aoun said.

“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 carers suffer from grief, anxiety, depression, strain, burden, fatigue, impaired quality of life and reduced social contacts.

“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.

“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 funding received from MSWA via MND Research Australia has enabled the study team to provide valuable information on the impact of MND caregiving on bereavement and psychosocial outcomes.

“The research has also provided helpful insights for clinicians in recognising MND carers at risk of prolonged grief disorder and ensuring that the required support is provided to enable them to move on.”

“The overall aim is to improve the caregiving experience for MND family carers, establish early intervention to reduce the risk of complications of grief and to develop best practice guidelines,” 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 University), Dr Anne Hogden (University of Tasmania), Leanne Jiang (Perron Institute/UWA) and Natasha Bear (Notre Dame, Fremantle).

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 surveys and more information can be found at:

MSWA’s grants to the Motor Neurone Disease Research Australia are part of MSWA's record $3.5 million investment in 2018-19 for neurological research.