Support
Support for MND Carers
Caring for someone with motor neurone disease (MND) is both rewarding and challenging, bringing unique demands and responsibilities.. MND Victoria’s Carer Support Program is dedicated to providing carers with the resources, guidance, and community connection needed to support them through this experience.
Why MND Carers Need Support
MND is a progressive disease that affects mobility, communication, and independence, creating complex needs that change over time. Family members and friends play a vital role in assisting with daily activities, offering emotional support, and coordinating medical care. This is where we get the term carer. The demands of caring can be overwhelming, often leading to physical and emotional exhaustion.
MND Victoria recognises the crucial role unpaid carers play and the importance of providing them with dedicated resources. Through our MND Carer Support Program, carers can access guidance, respite, peer support, and counselling, enabling them to maintain their own wellbeing while effectively caring for their loved one.
Ongoing carer programs
Participate along side other carers in our ongoing carer programs. Meet, learn from and support other carers in our ongoing carer programs. Programs include online support groups, in-person lunches, wellness activities and overnight retreats.
Family Carers Information Toolkit
Read, watch and listen to some useful resources all about carers and caring. Read, watch and listen to some useful resources on a variety of topics that will assist you in the care you provide.
Carers Can Project
View our educational videos and resources to learn ways to navigate common care challenges associated with MND.
Emotional Support & Counselling
Caring for someone with MND can be emotionally challenging. Through our counselling services, carers have a safe space to discuss their experiences and access professional support. Confidential, person-centred counselling helps carers process their emotions, develop coping strategies, and maintain mental wellbeing. Our counselling sessions are flexible and available via Zoom, phone, or face-to-face at our Canterbury office.
Watch Bruce and Natalie's story
How to Access Support as an MND Carer
Connecting with MND Victoria’s Carer Support Program is straightforward. Here are the steps to get started.
1. Make sure you’re registered with MND Victoria
If the person you are caring for is already connected with MND Victoria, your MND Advisor can make sure you are included in all communications about the Carer Support Program. They’ll help assess your needs and connect you with the appropriate services, ensuring you have access to the full range of support options.
2. Check out What's On
Keep an eye on the website if you're not receiving regular emails and let us know if you're interested in participating in anything you see there. Email carer.support@mnd.org.au
3. Join in
Carers are encouraged to participate in support groups and workshops, which are held regularly and cover various topics relevant to MND caring. These sessions offer practical advice, emotional support, and a community of peers who understand the unique challenges of MND.
4. Complete the Carer Alert Thermometer
Complete the Carer Alert Thermometer below and someone will get back to you with ways of helping to meet your caring needs.
Carers respite funding
MND Victoria have been successful in receiving grant funding to support selected respite activities for carers until 30 June 2027. As there are a number of different avenues where support or funding can be arranged, if you have a need, a gap in services or are generally interested in getting more support, please contact your MND Advisor or email carer.respite@mnd.org.au
Victorian Support for Carers Program
Support for young carers
MND National Youth Hub is operated by MND NSW and provides information, support services and tools for young carers aged 5 to 24 years old.
The National Youth Hub is a space for young carers to chat, share, and connect about their experiences with providing care for someone with motor neurone disease. Young carers play a big part in the journey of someone diagnosed with MND, and they need a robust support network.
For more information on the National Youth Hub, please contact us at info@mnd.org.au or call us on 1800 777 175.
You can visit MND New South Wales website for additional information.
Carer’s Alert Thermometer (CAT)
10 short questions that ask you whether you need any support across two main areas of caring;
- support needed to provide care, and
- support needed for your own health and well-being.
The CAT is an evidence-based alert tool designed to identify the needs of people who are providing support to a family member or friend at home as an unpaid carer. Originally developed for use in the UK with unpaid carers providing end of life care at home it is now being used with carers who are providing support to patients with a range of long-term and progressive conditions, as well as those receiving palliative and end of life care.
Your responses to this questionnaire will go directly to the Carer Support Program team who will respond with suggestions and guidance for where to get the information and support identified by your answers.
But don’t forget, you can also ask your MND Advisor and Support Coordinator these questions as they will have loads of resources ready to offer you.
Support for Carers FAQs
Yes, MND Victoria’s Carer Support Program is provided at no cost to carers, ensuring accessible support for all who need it. Services like counselling, support groups, and educational resources are available to carers without a financial burden.
To join a support group, contact our Carer Support Team, who will provide information on upcoming sessions and help you sign up. You can also view all of our upcoming sessions online. These groups are an excellent way to connect with other carers and share experiences in a supportive environment.
MND Victoria offers access to a variety of respite options, including temporary caregiving services and connections to community respite providers. Respite can be arranged for short periods or longer durations, depending on the carer’s needs. Talk to your Advisor.
Yes, MND Victoria recognises the unique experience of caring for someone with MND. While there are many community programs for carers, our programs are specific to the experiences you have with MND. Topics include caring techniques, communication strategies, and emotional wellbeing. These workshops provide valuable knowledge tailored to the unique challenges of MND.
Counselling services are available to all MND carers. You can arrange a session by contacting MND Victoria’s support team or your MND Advisor, who will guide you through the process of scheduling an appointment with our counsellor.