A new national study identified the need for greater emotional support at end of life for family carers of people with motor neurone disease (MND).
The vulnerability and loneliness experienced by grieving caregivers, and the perceived need for more compassion and continuity of contact to assist in coping with bereavement were other key findings.
The study, published in the journal Palliative Care and Social Practice, was supported by an MSWA grant allocated through MND Research Australia. The project, led by Professor Samar Aoun from the Perron Institute and La Trobe University, focused on the perceptions of carers from Australian MND associations.
“People with MND are one of the most vulnerable patient groups because from diagnosis, they face the rapid progression of profound disability and ultimately death,” Professor Aoun said. “Family caregivers are one of the most challenged caregiver groups facing physical, psychological and social strain.
“Barriers to providing and receiving high-quality end of life care are multiple and complex. At a system level, for example, there is a disconnect between health, disability, and aged care services,” Professor Aoun said.
As well as heading the Supportive and Palliative Care Research group at the Perron Institute, Professor Aoun is President of the Motor Neurone Disease Association of WA.
Providing the basis for the recent study were outcomes of a national bereavement survey in 2019 that was facilitated by all MND associations in Australia and promoted by MSWA to our community.
“The MND associations are doing fairly well in the provision of equipment, informational and practical support, making home visits, liaison with other services on behalf of the clients and helping clients navigate the various systems of health and disability.
“Emotional support for carers is important to reduce the level of depression and anxiety that can lead to prolonged grief disorder.
“A more standardised practice by MND associations is recommended, basing the frequency and nature of client visits on assessment of the disease progress and the distress felt by the family. A more standardised national approach to training MND Advisors and to service delivery is also required,” Professor Aoun said.
Professor Aoun also recently launched an online toolkit for MND carers to provide wider support. Developed in response to the research findings, this robust resource will add value to the lives of people living with MND and those caring for them.