Carers play an important role in the wellbeing and support of someone with Parkinson’s.
Caring for someone with Parkinson’s can be a very long and difficult journey, and everyone reacts quite differently to the challenge. Make sure you take time to look after yourself as much as possible.
What is a carer?
Carers are people who look after someone who needs help with their day-to-day living. Carers are often partners and family members, but could also be colleagues, friends or neighbours. Many carers who live with a person with Parkinson’s will not view themselves as a ‘carer’. First and foremost, they will view themselves as a parent, wife, husband, son, daughter, friend, family member or partner.
You do not need special medical training to assist someone living with Parkinson’s, though it is highly recommended that you seek professional help in the advanced stages. Most carers are asked to help with, or just take over, daily tasks that may become difficult or near impossible for someone with Parkinson’s. Carers may assist with making and keeping appointments, transport, cooking, and cleaning, as well as provide ongoing emotional support, on the good and the bad days.
Carers can be any age. Children and young adults (under 25 years of age) are called young carers. There are special groups and supports to assist young carers with the challenges they face.
What is a young carer?
Children and young adults (under 25 years of age) are called young carers. Young carers provide support to someone with a chronic illness or disability, such as Young Onset Parkinson’s Disease (YOPD). These carers play a vital role in helping their loved ones manage daily tasks, attend medical appointments, and provide emotional support.
Challenges Faced by Young Carers
Young carers face unique challenges, including balancing their caregiving responsibilities with school, work, and social activities. They may experience emotional stress, feelings of isolation, and a lack of understanding from peers and teachers. Additionally, the fluctuating nature of YOPD can make caregiving unpredictable and demanding and may cause them to miss out on extra curricular activities.
Supports
If your child needs immediate support, you can ring 000 or the Kids Helpline 1800 55 1800 (for people aged 5 to 25).
You can get information on whether there is a young carers group near you by contacting Carers Australia or your state or territory carers organisation. Young carers also have the Young Carers Network and the Young Carers bursary to help with the costs of schooling. Make sure you register them on the Carer’s Gateway to access services and supports.
ReachOut
ReachOut offers a wide range of support options that allow young people (under 25) to engage in the ways they want to, when they want to:
- ReachOut peer workers are now available 3—8 pm Monday to Thursday, 1—5 pm Fridays. Chat now.
- Reach Out – communication skills for teens, parents and schools.
Young Carers Network
The Young Carers Network (YCN) is a nationally coordinated resource to raise young carer awareness, provide information, and direct young carers to appropriate pathways for support.
Young Carers Bursary
The Young Carer Bursary is a helping hand. It’s money Carers Australia gives to young carers (aged between 12 and 25 years old) to make life a bit easier while you’re studying and caring for someone. Applications open in Sept/Oct each year.
Be aware of these things as you are caregiving
Caregiving for someone with Parkinson’s can be a challenging yet rewarding experience. It requires a delicate balance of patience, communication, and understanding. Here are some key aspects to keep in mind while caregiving for someone living with Parkinson’s.
Understand the challenges of Parkinson’s
Parkinson’s is a complex and progressive neurodegenerative condition that affects movement, speech, swallowing, mood, and cognition. To provide effective care, it is essential to understand the challenges faced by individuals with PD. Enrolling in a MOOC (Massive Open Online Course) about Parkinson’s and the Carers Skills courses can provide valuable insights and knowledge. See more at our Education & training page.
Communication – know when to help and when not to
Effective communication is crucial. It’s important to know when to step in and offer help and when to step back. Sometimes, the person with PD might need support, but at other times, they may prefer to manage tasks independently. This balance ensures that they retain a sense of control and autonomy.
Patience
- Allow time for independence
Allowing time for the person to do things for themselves without rushing them is vital. Parkinson’s can slow down movement and cognitive processes. Patience in these situations helps the individual maintain their dignity and independence. - Don’t take over
While it might be tempting to speak for them or complete tasks on their behalf, it’s important not to take over unless asked. This approach respects their capabilities and encourages self-reliance. - Manage everyone’s expectations & adopt a day-by-day approach
Parkinson’s is unpredictable, and symptoms can fluctuate hour to hour and vary daily. Adopting a day-by-day approach can help manage expectations and reduce stress for both you and your person with Parkinson’s. Flexibility and adaptability are key.
Know the care team
Understanding which healthcare professionals to consult is essential. Neurologists, physiotherapists, occupational therapists, and speech pathologists all play a role in comprehensive care. Building a strong care team ensures that your person with Parkinson’s receives well-rounded support.
Prepare for appointments
Staying observant of any changes in symptoms is crucial. Prepare for medical appointments by keeping a detailed record of symptoms, medication effects, and any concerns. This information can help healthcare professionals provide the best possible care.
Look after yourself
Being honest with yourself and others about the challenges you face and how you feel is important. Being a carer can be demanding, so it’s essential to prioritise your own health and wellbeing. Seeking support from friends, family, or carer support groups can make a significant difference. Get yourself registered as a carer at the Carer Gateway ASAP: 1800 422 737 Monday to Friday, 8am to 5pm.
Ambiguous loss and grief
When someone you love is diagnosed with Parkinson’s, it can feel like life has been turned upside down. You may still see the same face, hear the same, but quieter voice, and share the same home, but something has changed. This feeling of loss without a clear ending is called ambiguous loss.
GriefLine Website
Griefline offers free, compassionate, and confidential support. Because grief deserves to be heard, not dismissed. Helpline 1300 845 745 8am to 8pm: 7 days (AEST).
More at Friends, family & carers
How do I access supports?
There are many carer supports available, including support groups, online training, counselling, breaks and respite care, as well as financial supports if you are eligible.
CarerHelp
Carerhelp aims to empower carers to cope with the hard times as well as they can, and to make space for good times as well. When carers feel ready for their role, everybody benefits. Here are some of the key things carers can get from the Carerhelp website: carerhelp.com.au
- Access to high-quality information and resources that support them in the carer role
- Knowledge of the services available to carers
- A greater sense of control over their role
- Better communication with your care team, family and friends
- Greater wellbeing
Carer Gateway
Carer Gateway is an Australian Government program providing free services and support for carers. There is a wide range of help available from counselling to respite care. To find out what support and services are available, call 1800 422 737 or visit their website carergateway.gov.au
Carer Support Groups
A support group consists of people who get together to give and get support and assistance in coping with a common problem. They are not a substitute for medical advice, nor are they fundraising groups. They are simply voluntary gatherings of people who share common situations and problems and who, by sharing their experiences, support and help each other. There are many online and face-to-face groups, so you should be able find one that suits you. Call the national infoline on 1800 644 189 to connect to your state or territory organisation to ask if they have a specific Parkinson’s carer group.
Carer-inclusive workplace initiative (CIWI)
Carers have a right to flexible working arrangements. Best practice employers foster an inclusive culture with policies, open dialogue and an empathetic approach to each employee’s personal circumstance. The Carer-inclusive Workplace Initiative aims to create more inclusive and supportive workplaces for the 2.65 million individuals who provide unpaid care in the community. It is managed by Carers Australia and funded by the Australian Government Department of Social Services. CIWI has information and resources for employers that has been developed by HR professionals, carers and industry.
For example, to determine the level of carer-inclusivity in their organisation, employers can use a self-assessment tool. It contains 11 questions to help determine what policies and practices already exist. It will:
- Establish the current knowledge around carers and their rights.
- Question the level of flexibility available for carers in the workplace.
- Delve into the strategies already deployed by the organisation.
You can also create a carers hub, develop wellness action plans, organisational statements and flexible working arrangements from a range of templates and examples provided.
Young Carers
You can get information on whether there is a young carers group near you by contacting Carers Australia or your state or territory carers organisation. Young carers also have the Young Carers Network and the Young Carers bursary to help with the costs of schooling. Make sure you register them on the Carer’s Gateway to access services and supports.
Infosheet under review
Carers Australia is the national peak body representing Australia’s unpaid carers, advocating on their behalf to influence policies and services at a national level.
Carers Australia recognises and values employees who have an unpaid caring responsibility and the contribution they make to the health and wellbeing of the people they care for.
What we do
Carers Australia advocates and lobbies on a wide range of issues that affect carers. We also manage the delivery of national programs, support and services for carers across Australia.
We work in collaboration with carers, Carers Associations, government and peak bodies to develop policy, advocacy, programs and events to improve the lives of Australia’s 3 million carers.
References
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Donations
Your donation helps us to achieve our core business, to improve the lives of people affected by Parkinson’s in Australia through national advocacy, raising awareness and connecting people living with Parkinson’s, their families and carers, researchers and health professionals in the Parkinson’s community.
