Caring for Someone with a Neurological Condition? Practical Advice for Carers
5 June 2025
Caring for a loved one with a neurological condition is a significant act of support and commitment, but it can also involve ongoing challenges, uncertainty and emotional strain. With over 600 recognised neurological conditions — including migraine, stroke, epilepsy, dementia, FND, motor neurone disease, Parkinson’s, brain and spinal injuries or tumours, multiple sclerosis, fibromyalgia, autism and many others — each person’s experience is unique, and so is the support they need.
Whether you are a spouse helping a partner manage Parkinson’s disease, a parent supporting a child with a neurodevelopmental disorder or an adult child assisting an ageing parent after a stroke, your role is essential. But it’s also one that requires the right information, support and self-care.
Here’s some practical suggestions that may help you feel more prepared and less alone on the journey.
1. Learn About the Condition
The nervous system — including the brain, spinal cord and peripheral nerves — is complex, and so are the conditions that affect it. Each diagnosis comes with its own symptoms, progression and care needs.
Understanding your loved one's condition is a carers most powerful tool. Knowledge helps you anticipate changes, make informed decisions and advocate more effectively. It also reduces the fear and uncertainty that come with the unknown.
Start by learning the basics:
What symptoms to expect.
How the condition typically progresses.
What treatments, therapies or supports are available.
How the condition might affect thinking, behaviour or mood.
From there, dive deeper into what matters most to you and your family:
Ask questions — no matter how small — during appointments. Write them down ahead of time.
Seek reliable information from your GP, specialists such as neurologists, paediatricians, gerontologists and not-for-profit neurological organisations, not just online forums or generic health sites. The Neurological Council of WA offers a Neuro Tele-Nurse Helpline that supports people of all aged affected by any neurological condition or symptom, and their carers and families. In Western Australia, many condition-specific organisations also provide excellent support (see the end of this blog).
Connect with specialist neurological nurses or navigators, such as the Neurological Council of WA’s NeuroCare
and NeuroKids community neurological nurses. Specialist neurological nurses provide practical assistance and can help manage symptoms, make sense of a new diagnosis, medications, treatment options, and support pathways. They can also help coordinate your care by liaising with health professionals and attending key appointments with you. Many WA neurological not-for-profits offer tailored health education and care navigation to help families and carers understand specific neurological conditions including Epilepsy, Alzheimer's, Parkinson’s, Huntingtons, MND and MS.
2. Look After Your Own Health
Carers often prioritise their loved ones and put their own needs last — but sustained, effective care is only possible when you too are mentally and physically healthy.
Be realistic about what you can do. Everyone has limited time and energy in a day, yet the role of an unpaid carer often has no bounds. Focus on what is important and what you achieved. Don’t beat yourself up about what you didn’t do or could have done.
Apply OHS principles at home – learn manual handling, don’t put yourself or your loved one at risk of harm
Get at least 7 hours sleep, move your body and eat nourishing meals regularly.
Make time for rest and activities that help you recharge. Keep up your own interests and hobbies. Find time for things that bring you joy.
Book and attend your own routine GP, specialist, dental and other health screening and care appointments to ensure you don’t neglect your own medical needs and treat emerging health issues promptly.
Ask for help when you need it. Avoid self-medicating or internet fads to cope.
Seek counselling or emotional support if you’re feeling overwhelmed, burnt out or like you’re losing your sense of self or grieving the life you imagined for yourselves.
Don’t hesitate to use respite care — even short breaks can make a big difference.
If your loved one relies solely or substantially on you for care, we understand that accessing support for yourself can be difficult. Our NeuroCare and NeuroKids neurological nurses offer one-on-one home visits, phone and virtual consultations. They can help with wellbeing check-ins, referrals to local supports and practical advice on building routines that sustain your health and well-being — not just your caregiving role.
3. Build a Support Network
Carer fatigue is real — and it can be isolating. Support is available.
Reach out to family, friends, neighbours or support groups.
Be specific when asking for help (e.g., "Can you please stay with Mum for an hour on Tuesday?").
Join a local or online carer community to connect with others who understand.
The Neurological Council’s NeuFriends peer support groups offer relaxed, welcoming experiences where both carers and their loved ones can share stories, strategies and a coffee with others in similar circumstances. It’s a chance to be heard, feel understood and find practical support — not just for the person you care for, but for you, too. Carers WA, and other neurological organisations, may also offer condition-specific support groups and resources for carers — it’s worth researching what’s available for your you and your loved one’s particular diagnosis.
4. Get Practical Help with Navigating Systems
The health, disability and aged care systems can be complex and confusing. As a carer, you might be juggling appointments, medications, therapy plans, equipment needs, funding applications and more — often without anyone clearly guiding the way.
Use a care journal or app to keep track of symptoms, medications, appointments, questions, answers, instructions and key contacts.
Don’t be afraid to follow up with providers or ask for information to be explained more clearly and preferably in writing.
Reach out for help navigating NDIS, My Aged Care, school supports or local community services.
Through our NeuroCare
and NeuroKids services, community neurological nurses can:
Help you understand diagnoses and care pathways.
Explain how systems like NDIS and My Aged Care work — and how to access them.
Undertake nursing assessments to use as evidence for applications or to help inform referrals.
Provide referrals to community services and allied health supports.
Assist with planning for changes in care needs over time.
Offer practical strategies for managing day-to-day challenges.
You’re not alone — and you don’t have to become a case manager overnight. The Neurological Council can work along-side you to help navigate health, disability and education systems. We’re available when you need us and we step back when you feel you’re on track and managing well.
5. Communicate With Compassion
Neurological conditions can affect memory, speech, behaviour and mood — making communication challenging, frustrating or emotionally intense for everyone involved.
Stay calm and patient, especially during moments of confusion or distress.
Use simple, clear language, consistent routines and visual aids to support understanding.
Try to interpret behaviour as a form of communication — especially when words are difficult. Difficult behaviours are often an expression of unmet need.
Take breaks when needed. Emotional regulation is important for you and
the person you’re supporting.
Many carers face similar communication challenges. Peer support networks like NeuFriends can offer helpful strategies and emotional insight, especially when navigating communication challenges. Condition-specific organisations may also provide communication tips tailored to particular diagnoses.
6. Celebrate the Small Wins
Caring is rarely linear. There may be setbacks, plateaus and small victories that only you see. Don’t underestimate their significance.
Acknowledge moments of calm, connection, laughter or independence.
Reflect on the impact your support has made — even when it’s invisible to others.
Give yourself credit. You are doing something valuable, meaningful and brave. The work of unpaid carers is critical to society and the economic value of the contribution you and others make in Australia is over $80 billion per annum.
You Are Not Alone
Being a carer for someone with a neurological condition is a complex, deeply human role. You are advocate, organiser, emotional anchor, and more — and you deserve support just as much as the person you’re caring for.
At the Neurological Council of WA, our services are designed to empower both individuals and those who look after them — because we know that informed, supported carers make a world of difference.
Learn more about our NeuroCare and NeuroKids services — and connect with others through NeuFriends
peer support groups.
For specific conditions, visit the relevant not-for-profit organisation:
