Online Toolkit available for MND family carers

Family and friends play an important role in caring for their loved ones who have motor neurone disease (MND).

To support carers in this role, the Motor Neurone Disease Association of Western Australia (MNDAWA) has developed an online toolkit as a ‘one stop shop’ for information, resources and relevant links.

The research-based kit supplements existing support provided by MNDAWA for family carers. Topics covered include understanding MND, who to contact, emotional and spiritual support, financial, legal and work issues, and being involved in decision making.

There are sections also on personal care and domestic support, respite options, managing feelings and worries, and the importance of taking time to look after personal needs.

Motor neurone disease is a progressive, life-limiting neurological condition in which the nerve cells controlling the muscles that enable us to move, speak, swallow and breathe degenerate and die. There is no cure, but symptoms can be managed to help people diagnosed with this devastating condition achieve the best possible quality of life.

MNDAWA President Professor Samar Aoun (pictured) said family carers of people with MND often described their caring experiences as unrelenting due to the progressive nature of the disease. 

“Studies have reported that family carers suffer from anxiety, depression, strain, burden, fatigue, impaired quality of life and reduced social contacts. 

“The MND carers toolkit launched during National Motor Neurone Disease Week (2-8 May 2021) is part of a wider carer support program,” she said. 

Professor Aoun heads the Supportive and Palliative Care research stream at WA’s Perron Institute for Neurological and Translational Science. She also holds the position of Professor of Palliative Care Research at La Trobe University.

Although designed specifically for family carers of people with motor neurone disease, much of the toolkit information is applicable to family carers of people with other life limiting diseases.

The online toolkit for MND carers is available at: 

https://www.mndawa.asn.au/family-carer-support