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.

FAQs

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 to near impossible for someone with Parkinson’s. Carers may assist with making and keeping appointments, transport, cooking, 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.

Carers can be any age. 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 is in need of 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 contacting Carers Australia or your state or territory carers organisation. Young carers also have the Young Carers Network and Young Carers bursary to help with 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:

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 give 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.

Communication is key to caring for anyone. A Parkinson’s journey includes a multidisciplinary team, so developing good relationships with all involved in their care is paramount. A few other tips that may be helpful to carers of people living with Parkinson’s:

  • Talk to each other and agree on care decisions and responsibilities in light of the diagnosis together to avoid miscommunication and resentment.
  • Have patience with the person with Parkinson’s, they experience slowness of movements, inability to find words at times, and tend to do ‘one thing at a time’.
  • Speak to the person with clear tone and timing. You do not need to speak louder (unless you are aware that they have a known hearing impairment).
  • Speak slowly enough for that person. Repeat their turn of phrase to also help them slow their speech down.
  • Provide time for them to participate in any conversations or respond to any questions. It is very important that you don’t fill in the spaces for them.
  • Encourage them to use single words or short word phrasing so their message is clearly conveyed.
  • Provide empathy – between word-finding, not being able to keep up with conversations and slow responses, communicating becomes difficult for a person living with Parkinson’s. It may leave them with a loss of confidence in addition to being frustrating and exhausting. However, it is very important they don’t disengage from social situations due to communication issues.
  • Where appropriate, try asking closed-ended questions where people with Parkinson’s can answer simple ‘yes and no’ answers, especially towards the end of the day.
  • Always acknowledge when you have understood their questions and communication (e.g. nodding your head and saying ‘thank you’).

You may come across other communication barriers. The person you are caring for is having Parkinson’s symptoms including loss of facial expression, word-finding and other cognitive changes. Some of these communication barriers and symptoms you may encounter are detailed on the Communication & Parkinson’s information sheet.

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, help from family, friends, work colleagues and neighbours will help you on your journey.

The results of the 2024 Carer Wellbeing Survey discovered some powerful insights related to carers in the workplace.

Survey results showed:

– Carers who are employed are 54% more likely to have healthy levels of wellbeing

– Carers with supportive workplaces are 33% more likely to have healthy levels of wellbeing

– However, 1 in 2 carers are doing less paid work than desired

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.

Sometimes when Parkinson’s hits, you are at an age or stage when you are still:

  • caring for aging parents
  • caring while still working
  • caring for young children/grandchildren

With all that can be on your plate, the new demands on your time and energy, still try to do some things you enjoy. Find time for social activities, exercise or coffees with a friend. Maintaining your identity is important for your mental and physical wellbeing. You can do this. Make time to yourself, seek help from government programs and focus on your own health and wellbeing.

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 fund-raising 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 see if your state or territory has 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 contacting Carers Australia or your state or territory carers organisation. Young carers also have the Young Carers Network and Young Carers bursary to help with costs of schooling. Make sure you register them on the Carer’s Gateway to access services and supports.

Advanced Care Planning is where you or your person with Parkinson’s share your beliefs, values and preferences for future health care decisions with your loved ones and your health care team. If you are in a situation where you are unable to make decisions about your care, the Advanced Care Plan will guide those who are caring for you to make decisions about your treatment. It gives you control.

There are several types of Powers of Attorney and Advanced Care Plans that can be put in place which vary depending on which state or territory you live in. An enduring Power of Attorney is where you appoint someone to make financial and personal decisions on your behalf if you become unable to make your own decisions such as if you have failing cognitive health or lose capacity to make decisions through an illness.

Everyone regardless of age of health status should have an advanced care plan and an enduring power of attorney so that your wishes and preferences are respected and there is someone that can look after your affairs if you become unable to do so.

We recommend care partners work through these templates early with your person with Parkinson’s; as well as for yourself. For more information visit advancecareplanning.org.au or click here to view the Department of Health information sheet for further details.

What is palliative care?

Palliative care is for anyone of any age, who has been told that they have a serious illness that cannot be cured. Palliative Care Australia (PCA) is the national peak body for palliative care and has a range of resources on their website for carers.

The Australian Healthcare and Hospitals Association have re-launched the Palliative Care Online Training Portal, funded by the Australian Government. The Portal provides free, non-clinical, interactive training to carers, community and aged care workers, students, volunteers, family members and clinicians who want to build their skills if they are caring for someone with a life-limiting illness.

To date this training has been delivered to over 35,000 people and covers topics such as:

  • the needs of people and their families as they approach end-of-life
  • assessment skills
  • end-of-life conversations
  • self-care and building resilience
  • pain management
  • recognising deteriorating patients.

The Palliative Care Online Training Portal is available at www.pallcaretraining.com.au

Registration is free and there are no time restrictions for completion of the modules.

More information:

Voluntary Assisted Dying (VAD) key facts from healthdirect.gov.au/voluntary-assisted-dying

Voluntary assisted dying (VAD) is when someone has medical assistance to end their life because they have an advanced medical condition that causes intolerable suffering.

  • Currently, VAD is available in Queensland, New South Wales, South Australia, Tasmania, Victoria and Western Australia.
  • Strict criteria govern who is eligible for VAD, but these criteria vary slightly from state to state.
  • If you have a terminal medical condition (a disease or illness that is likely to cause death soon, e.g. a Parkinson’s Plus condition) and are thinking about VAD, your doctor or health professional can give you more information.
  • To be eligible for VAD in most states, a medical condition must be expected to cause death within 6 months, or 12 months in the case of a neurodegenerative (progressive neurological) condition. In Queensland, the expected timeframe is 12 months for all medical conditions.

More information:

The Parkinson’s MOOC (massive open online course) was developed by the Wicking Dementia Centre and Menzies Institute for Medical Research.

It is designed to be accessible to and informative for everyone, including people with Parkinson’s and their support networks, medical and allied health professionals and the wider global community. It’s free and made in Tassie! Enrolments are now open open.

This comprehensive course is designed to provide you with in-depth knowledge about Parkinson’s, its symptoms, treatments, and the latest research advancements.

Course highlights: The MOOC has 5 modules that include:

  • information on the symptoms of Parkinson’s
  • risk factors and pathology
  • medicines and medical devices
  • allied health therapies
  • strategies for living well with Parkinson’s.

How to enrol:

  1. Visit their course page click here.
  2. Click on the ‘Enrol in Course’ button.
  3. Follow the registration instructions.

Start the MOOC today – there will be a staggered release of each of the course modules with the introductory and first few modules are available now.

Don’t miss this opportunity to empower yourself with knowledge and make a difference in your own life or the lives of those living with Parkinson’s.

For EMERGENCY or PLANNED RESPITE (where a service provider cares for your family member or friend while you take a break).
1) Check with your NDIS plan or My Aged Care package first to see what support you can access.
2) Ring Carer Gateway on 1800422737 to discuss any further support needs. You will be connected to your local service.

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 can provide valuable insights and knowledge.

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.

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Parkinson’s Awareness Month

April is Parkinson’s Awareness Month. We’d love you to participate. Watch our campaign to change the face of Parkinson’s and subscribe to our YouTube channel for more videos on living well with Parkinson’s. Stay informed with our monthly newsletter. Please donate today to help us continue to raise awareness and advocate nationally for people living with Parkinson’s.