What is Essential Tremor?
Essential Tremor (ET) is a neurological condition that causes shaking, most often in the hands and arms. It can also affect the head, voice, trunk and other parts of the body. Some people experience an “internal” tremor, a feeling of shaking inside the chest or body that others cannot see.
If you’re supporting someone with ET, you might help with daily tasks, respond to changes in their needs and provide emotional support. You don’t need to be medically trained to make a meaningful impact. Simple, practical help, patient encouragement and knowing when to step in can all improve a person’s quality of life.
While there is no cure for ET, a combination of treatment and self-management strategies can ease symptoms and help the person stay independent. Whether you’re involved in early diagnosis or helping with more advanced tremor, support is available.
Carers can access a wide range of services, including financial assistance, respite care, counselling and peer networks. These resources can help you stay informed, build connections and maintain your wellbeing as the caring journey continues.
Starting the carer journey
For some people, caring begins gradually, which can include providing growing support to a loved one over a period of time. For others, it starts with a clear event, such as a diagnosis, a hospital stay or the day someone you are close to can no longer manage on their own. Whether you live nearby or support someone from a distance, it is essential to understand your rights, responsibilities and the support available to you.
This section outlines key considerations to help you prepare emotionally, practically and legally for the path ahead.
You do not need to live with the person you care for to be recognised as a carer. Many carers provide support remotely, through regular visits, phone check-ins or informal coordination of appointments and services.
There are no validated Australian statistics on the number of people with ET who may eventually require live-in care or residential support, however international research and clinic-based studies suggest that around one in four people with ET will need significant care at some stage. Most people with ET continue to live at home, supported by family, friends or community services – only a small number transition to residential aged care, typically when concurrent health or mobility challenges arise.
Many carers balance paid employment with their caring responsibilities. If you receive the Carer Payment, you may be able to work up to 100 hours over four weeks, excluding travel and study time. Flexible work arrangements, part-time roles or remote work can help you maintain income while continuing to provide care. Carer Gateway and Fair Work Ombudsman offer guidance on workplace rights and support with negotiating with employers.
Caring can be rewarding, but it also brings emotional and physical challenges. Feelings of stress, guilt or isolation are common. Physical fatigue can also become challenging, particularly for carers who provide significant support. If not addressed, these challenges can lead to burnout, a state of physical and emotional exhaustion.
Acknowledging these challenges early and accessing support such as counselling, peer groups or respite can help you stay well and continue in your role.
Open communication is key. Early conversations with the person you care for help lay the foundation for respectful, coordinated support. These discussions should cover:
- preferences for daily routines and support.
- medical and treatment goals.
- independence and dignity.
- planning for future care needs.
- legal arrangements such as an enduring power of attorney or an advance care directive.
It is vital to strike the right balance to provide support without undermining the person’s autonomy. Many people living with ET value their independence, even as symptoms get worse over time. By discussing preferences early, carers can better understand when to step in and when to step back.
ET may not be life-threatening, but it can lead to a gradual loss of function. Legal planning enables a smooth transition from informal help to formal care, without confusion or scrambling in moments of stress. It also ensures the person’s preferences are respected if they later struggle to express them.
These conversations also help clarify expectations, reduce misunderstandings and ensure that care aligns with the person’s values and wishes. They may feel difficult at first, but they are an essential part of building trust and preparing for future decisions.
Setting healthy boundaries is essential for both carers and those living with ET. By clearly defining your availability and personal limits, you create space to look after your wellbeing as well as provide sustainable support. By encouraging the person’s independence and asking for help when needed, you can share the load and prevent burnout for yourself.
Clear boundaries also protect your wellbeing and support a respectful, sustainable relationship.
It’s essential to keep accurate and thorough records when caring for someone. Keeping track of care preferences, medical appointments, medications and important legal documents, such as advance care directives, consent forms or an enduring power of attorney, helps ensure continuity of care and protects the rights of everyone involved.
By keeping good records, it’s easier to navigate transitions and support the person’s wishes as their needs change. It also helps ensure that the evidence is easily accessible to support a NDIS funding application, if the need arises in the future.
Enduring Power of Attorney (EPOA) and Advance Health Directives (AHD) rules differ by jurisdiction in Australia as each has its own legislation, forms, witnessing requirements and processes. The following provides an overview however it is important to seek state-specific guidance when assisting a person making future decision-making arrangements.
- Enduring Power of Attorney (EPOA)
- What it does: Allows a trusted person (often family or a friend) to make financial and sometimes personal/health decisions if the person loses capacity.
- When it starts: Financial decisions can start immediately or only after loss of capacity; health decisions usually start only after capacity is lost.
- State-specific: Rules vary by state. For example, in Queensland, one EPOA can cover both financial and health matters whereas in New South Wales these are separate (EPOA for financial, enduring guardianship for personal/health).
- Advance Health Directive (AHD)
- What it is: A written document stating a person’s wishes about future medical treatments (like life support or resuscitation).
- When it applies: Only used when the person can’t make or communicate decisions.
You might not need support right now, but it’s worth finding out what’s available – including financial help, respite care, counselling and peer support networks.
For a deeper understanding of available supports, see the Government-funded support for carers section and the Key support services section.
Your role as a carer
Caring for someone with ET isn’t just about hands-on help. It also means supporting their independence, speaking up when needed and adjusting as things change. Whether you are providing daily support or coordinating care from a distance, your role is vital in helping the person maintain quality of life and dignity.
It’s important to offer help when it’s genuinely needed and not simply because it’s faster or more convenient. Encouraging someone with ET to make choices and take the lead where possible helps preserve their confidence and autonomy.
You might find that using adaptive tools or strategies can make tasks more manageable without taking over. Respecting the person’s routines, preferences and pace is key to maintaining dignity and trust in the caring relationship.
There may be times when stepping in becomes necessary, such as when safety is at risk, to assist in handling hot items, navigating stairs or managing medication. You may also need to intervene when the person is visibly distressed, uncomfortable or fatigued. Sometimes, the person may ask for help directly.
When you do step in, it’s essential to explain your actions clearly and offer reassurance. Respectful phrases like ‘Let’s do this together’ can help preserve dignity while still providing the support that’s needed. With time, you will start to recognise the cues and stepping in will be more intuitive.
Advocacy means speaking up to ensure that someone with ET receives fair, respectful and appropriate care. This may involve:
- advocating for their preferences with health professionals.
- ensuring they have access to the services, resources and entitlements they’re eligible for.
- protecting their rights across aged care, disability or health settings.
- supporting informed decision-making and consent, especially when choices become more complex or when the person’s voice needs reinforcing.
Effective advocacy is person-centred. It reflects the person’s values, not just what seems easiest or most efficient. You can advocate in person, over the phone or in writing. Keeping records of conversations and decisions can help ensure continuity and clarity, especially when multiple professionals or services are involved.
Ways you can offer support
ET affects each person differently and your support as a carer plays a vital role in helping them maintain independence, confidence and wellbeing. Whether you’re offering practical help, emotional reassurance or advocacy, your contribution matters.
The tremor can make everyday tasks more difficult or frustrating. You may find yourself assisting with grooming, dressing, preparing meals, or using technology. Some people benefit from weighted utensils, non-slip surfaces, or voice-activated devices. Helping with transport, shopping, or household organisation can also reduce stress and conserve energy.
Living with ET can affect self-esteem, mood, confidence and social participation. Your emotional support, whether it is listening, encouraging or reassuring, or a combination of all three, can help the person feel understood and less isolated. Acknowledge their frustrations, celebrate small wins and gently encourage them to stay connected with others.
If the person agrees, going with them to medical appointments can help you follow the treatment plan, raise questions and share your observations. You may also assist with paperwork, referrals or follow-up tasks. With their consent, you can communicate on their behalf with health professionals to ensure their needs and preferences are clearly understood and adhered to, wherever possible.
Keeping a simple record of symptoms, medication effects or changes in mood or function can be helpful. You may notice patterns or concerns that the person hasn’t mentioned. Sharing this information with their care team can support timely adjustments to treatment or referrals to allied health professionals.
Support may include helping the person explore workplace adjustments, adaptive tools or flexible arrangements. Encourage participation in hobbies, volunteering or community events, even if modifications are needed.
Maintaining social connections is essential for mental and emotional health and your support can help reduce barriers to engagement.
You might help organise equipment or services by talking with an occupational therapist or support coordinator. Depending on the person’s needs, they may be eligible for funding through My Aged Care, Carer Gateway or other programs.
If the person is eligible for the National Disability Insurance Scheme (NDIS), your support can be invaluable. You may assist with gathering medical evidence, describing how ET affects daily life and linking support needs to NDIS goals. Advocacy services and support coordinators can help navigate the process and ensure the person receives appropriate funding.
Writing a letter of support for a NDIS application offers insight into what living with ET looks like. The letter can describe what a “bad day” looks like and how the person manages or struggles with daily tasks and the types of support you give. Because the NDIS assesses eligibility based on functional capacity across key domains like mobility, communication, self-care and social participation, as a carer, you are in a unique position to explain how ET affects the person’s ability to function in these areas.
Explaining how the caring role affects your wellbeing, capacity and plans provides the National Disability Insurance Agency (NDIA) with a realistic view of what’s sustainable and where you may require additional support.
Training, tools and guidance
Caring for someone with ET can be rewarding, but it also brings challenges. There are services, resources and communities designed to support you in your caring role, whether you’re seeking practical skills, emotional support or culturally appropriate guidance.
You don’t need formal training to support someone with ET, but free programs can help you gain skills, build confidence and protect your wellbeing.
Carer Gateway offers self-paced online courses covering topics such as stress management, communication, navigating legal issues and improving sleep. These programs support unpaid carers by focusing on practical strategies they can apply in everyday situations.
In Queensland, Carers Queensland also provides workshops and short courses that may be relevant to your role. These include sessions on safe mobility techniques, basic first aid and medication awareness, providing skills to help you feel more prepared and supported in your caring responsibilities.
These programs are not about becoming a professional carer. They are about helping you feel confident, informed and better equipped to support someone you care about.
While ET-specific workshops are limited, general carer education sessions are available through organisations like Carers NSW and Carer Gateway. These sessions give carers a chance to learn new skills, meet others in similar situations and feel more confident in their role. Topics may cover things like using equipment, keeping track of health changes and understanding how to access support. You can also access tailored support packages through Carer Gateway, which may include referrals to relevant workshops or services.
If English is not your first language, you can access interpreting services through Carer Gateway and the Translating and Interpreting Service (TIS National). Many organisations offer translated materials and culturally appropriate support. Carers Victoria, for example, provides brochures in multiple languages and can arrange interpreters for advisory calls. These services help ensure that carers from diverse backgrounds can access information and support without language barriers.
Carer Gateway provides free phone counselling, in-person support groups and online coaching to help carers manage stress and plan for the future. Peer support groups offer a safe space to share experiences, learn from others and build emotional resilience. Trained carers facilitate these groups and are available both online and in person. Mentoring and self-guided coaching options are also available for carers seeking personalised guidance.
Connect with support communities by joining online forums or attending in-person carer groups through Carer Gateway and Wellways Australia. These communities offer connection, advice and emotional support in a safe, moderated environment. Some of the peer support programs are available in languages such as Arabic, Cantonese, Mandarin and Vietnamese, helping carers from multicultural backgrounds feel seen and supported.
Caring for yourself while you care for others
Caring for someone with ET can be deeply rewarding, but it can also come with emotional, physical and practical challenges. It’s easy to focus all your energy on the person you’re supporting and forget about your own needs. Taking time to look after yourself isn’t selfish, it’s essential.
Caring takes time, energy and patience. Over time, it can also affect your physical and emotional health. You might feel exhausted, find it hard to concentrate or feel more irritable than usual. These can be signs that you need rest and support.
It’s important to take breaks. Whether that means a quiet hour to yourself or a few days of respite, stepping back can help you return with more energy and perspective. Support services and peer networks are there to help you stay well and continue in your role with confidence.
If things start to feel overwhelming, you’re not alone. Counselling, peer support groups and carer support lines can help you talk things through with people who understand. Call services like Carer Gateway and Lifeline are available 24/7, even if you just need someone to listen for a few minutes.
Caring rarely happens in isolation. You might also be working, raising kids or dealing with your health issues. That’s a lot to juggle, so try to plan where possible and don’t wait for a crisis before asking family, friends or your employer for support.
You may be entitled to financial support, workplace flexibility or government services. The rules can be complex, but services like Carer Gateway can point you in the right direction.
It’s not always comfortable to think about, but it’s worth having a plan. If you become unwell or unable to provide care, you ideally need a plan in place to ensure someone will look after the person you support. Carer Gateway provides emergency 24/7 respite care and can help you arrange temporary support while you recover.
Join the ET community in Australia
We founded Essential Tremor Australia to support the 300,000+ Australians living with ET.
ET is the most common movement disorder, yet it remains widely misunderstood.
We raise awareness to reduce the stigma of ET, advocate for the community, and provide support and information to live well with the condition.
