Bereaved MND family carers at higher grief risk

Few illnesses are as confronting and disruptive as motor neurone disease (MND). A diagnosis of this neurodegenerative condition begins a journey of inevitable decline through progressive immobilisation into death.

As well as the difficulty and distress experienced by those with this condition, recent evidence suggests that bereaved MND family caregivers are more likely to be at moderate or high risk of complicated grief.

Traumatised, angry and feeling abandoned were some of the caregiver emotions reported in a national survey on carer bereavement experiences.

The study led by Palliative Care Professor Samar Aoun (Perron Institute and La Trobe University) found that the experiences of those with this fatal disease and their family caregivers can be at times overwhelming.

“The bulk of care is provided informally at home and is demanding, with MND caregivers averaging over 40 hours per week,” Professor Aoun said.

“Caregiver distress has been reported to be twice as prevalent when the person being cared for has a neurological condition, and for MND carers, the risk of psychological conditions such as depression and anxiety is even higher.”

Respondents to the national MND bereavement survey expressed feeling abandoned post-death of the person with MND. Seeking out support, accepting help and being informed about MND were strategies emphasised by the caregivers.

“It is important for health and community service providers to identify and address caregiver support needs early and throughout the caregiving journey,” Professor Aoun said.

“Currently, it is not standard practice to screen MND caregivers for mediating risk factors such as family functioning, personal distress or support needs. There is a need for more integrated care between MND Associations, MND clinics, palliative and end-of-life care services and GPs.

“This can be achieved by a national approach to a systematic assessment of caregiver needs. As well as best practice protocols for service delivery, staff training should include understanding the resources available to caregivers.

“Community grief literacy and enhancement of social networks through a compassionate communities approach to care are other keys to improved support from families and friends. Peer social support has been one of the benefits appreciated by the survey respondents.”

The study was supported by a MND Research Australia-MSWA grant. Collaborators with Professor Aoun were: Clinical Psychologist Dr Kerrie Noonan, University of Western Sydney; Dr Geoffrey Thomas, Thomas MND Research Group Adelaide; and Associate Professor Bruce Rumbold, Director of La Trobe University Palliative Care Unit.

Professor Samar Aoun Perron Institute 2021