Most carers are asked to help with or take over daily tasks that may become difficult to near impossible for someone with Parkinson’s.

Carers may assist with making and keeping appointments, attending appointments to ensure information is understood and recommendations are followed, transport, cooking, cleaning, and providing ongoing emotional support on the good and the bad days. 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.

Parkinson’s is challenging for the person living with it. However, it can be just as challenging for a care partner. Grief and loss for what you thought your future together would look like to the reality of living with Parkinson’s. Carers can suffer from frustration and anger, depression and sleep disorders. If not properly looked after, they can experience carer burden.

However, having the right supports in place for you and your person with Parkinson’s, including sound information, a multidisciplinary care team, carer supports from government programs like NDIS, and help from family, friends, work colleagues, and neighbours, will help you on your journey.

There are many carers’ supports available, including support groups, online training, counselling, breaks and respite care, and financial supports if you are eligible:

Key Facts

  • There are over 3 million carers in Australia, making up nearly 12% of the population and about 1.2 million people (4.6% of the population) are primary carers
  • Two-thirds of primary carers are female, and the average age of a primary carer is 54 years old
  • Carers who are employed are 54% more likely to have healthy levels of wellbeing; however, 1 in 2 carers are doing less paid work than desired
  • Carers with supportive workplaces are 33% more likely to have healthy levels of wellbeing

References: www.carersaustralia.com.au, 2024 Carer Wellbeing Survey

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

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

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 to find one that suits you. Call the national infoline on 1800 644 189 to see if your state or territory organisation has a specific Parkinson’s carer group.

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 have been developed by HR professionals, carers and the 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.

Carer payments: If you care for someone, there are carer payments and services available to support you and the person you care for. See the Services Australia website for more information.

NDIS support: Having a neurodegenerative condition like Parkinson’s should qualify your loved one for NDIS supports under the early intervention stream (Section 25) if they are under 65 and meet the eligibility requirements. See the NDIS website for more information, or use the YOPX app to help guide you step-by-step through the process.

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