Caring for a loved one with Parkinson’s: A guide for families

Key takeaways

• Parkinson’s disease is a progressive neurological condition that affects movement, mood, communication, thinking and daily routines. This means care needs may change from day to day.
• Families caring for someone with Parkinson’s at home may be managing appointments, medications, safety, personal care and emotional wellbeing, often alongside their own work and family responsibilities.
• Practical ways to support someone with Parkinson’s at home include making the home safer by addressing fall risks, supporting regular movement and making mealtimes easier and safer.
• An independent support worker can provide support with daily living tasks, such as personal care and meal preparation. This may help a person with Parkinson’s continue living at home safely and independently.
• Building a care team through Mable for a loved one with Parkinson’s may help share the practical and emotional load, while giving them consistent support at home.

When a parent or loved one is diagnosed with Parkinson’s disease, families can find themselves in uncertain territory. They may need to quickly learn about symptoms, keep track of medications, understand what kind of support their loved one needs at home, and organise and attend medical appointments.

It can be an overwhelming time, especially when your parent or loved one’s needs may change from day to day.

This guide is designed to help you feel more informed and confident when caring for someone with Parkinson’s disease. You’ll find practical strategies that may help you feel more prepared when managing Parkinson’s symptoms, while supporting your loved one to stay safe and feel comfortable at home for longer.

What is Parkinson's disease?

Parkinson’s disease is a progressive neurological condition that mainly affects movement and mood. It happens when nerve cells in the brain don’t make enough dopamine, a chemical that helps control movement.

Parkinson’s symptoms are often grouped into two broad categories:

1. Motor: These may include tremors, stiffness, slow movement, balance problems and posture changes
2. Non-motor: These may include anxiety, depression, sleep problems, fatigue, constipation, cognitive changes and swallowing changes.

Some people may only experience motor symptoms, while others may have both. Both motor and non-motor symptoms matter because they can affect daily life, confidence and the level of support your family member may need.

While Parkinson’s is progressive, meaning it will likely get worse over time, good day-to-day support can make a meaningful difference to your loved one’s quality of life.

What is the reality of Parkinson's disease home care?

For many family members or representatives, supporting someone with Parkinson’s involves much more than one task. You may be:

• Coordinating and attending medical appointments
• Keeping track of your loved one’s medications and schedules
• Communicating with health professionals
• Monitoring changes in their symptoms
• Ensuring their home is as safe as possible.

As the disease progresses and your family member’s independence changes, they may need more help with personal care, dressing, showering or preparing meals. If memory or mood changes are also part of the picture, the emotional and practical load may become even greater.

There can also be grief in watching someone you love change. A parent or loved one who was once independent may now need help with everyday routines they used to easily do on their own.

Many family carers work and/or look after their own family, in addition to their care responsibilities. Some may even be coordinating care from a distance. If you’re in one of these situations and are starting to feel stretched, you may benefit from help with the caregiving role.

How can you care for someone with Parkinson's at home?

There are many practical ways families can support someone with Parkinson's disease at home. The approach will depend on the person, their symptoms and how their needs change over time.

The strategies below may help you feel more prepared when managing Parkinson’s symptoms at home. Before trying anything new, speak with your family member’s GP, neurologist or allied health team for advice that suits their needs.

Make the home safer

Falls are common among Australians aged 65 years and over, with many people experiencing one or more each year. Fall risk may increase in those with Parkinson’s because of their motor symptoms, such as stiffness or imbalance. That’s why fall prevention can be an important part of Parkinson’s disease home care.

To address fall risk at home, you may like to start by carefully looking around to identify possible hazards. You could remove loose rugs, clutter, cords or furniture that make walkways harder to navigate. You could also consider installing good lighting, non-slip surfaces, grab rails or a shower chair.

An occupational therapist has expertise in assessing how a person’s home, mobility and daily routines may affect their falls risk. They can recommend home modifications that may make daily living safer and easier. You can book a verified occupational therapist for a formal home assessment through Mable.

Support movement and mobility

Regular movement may help people with Parkinson’s maintain mobility, posture and quality of life. Exercise can also help reduce anxiety and depression.

A physiotherapist or other allied health professional can recommend specific exercises to help manage freezing episodes, balance changes and mobility challenges.

Your loved one can also do other forms of gentle exercise that might include walking, tai chi or stretching depending on their abilities.

Before starting or changing an exercise routine, it is important to seek advice from your family member’s GP, neurologist, physiotherapist, exercise physiologist or other medical professional.

Keep medication routines consistent

A NSW Health project found delaying Parkinson’s medications by more than 15 minutes can worsen symptoms such as tremors, rigidity, confusion, agitation, anxiety and loss of balance.

This is why Parkinson’s Australia recommends taking medication as prescribed and on time. They suggest using tools such as alarms, pill organisers or support from a care team to help maintain a medication routine. A support worker can help with reminders, where this is agreed and part of their role.

Any medication changes should always be made by the treating neurologist, GP or a pharmacist.

Adjust communication as needs change

Parkinson’s may affect speech, facial expression, thinking speed and memory. This can make communication more tiring, especially when your loved one is having a difficult day.

When communicating, it may help your family member if you speak clearly, use one instruction at a time and allow extra time for them to respond. Try not to rush or finish sentences unless they want you to. If speech or swallowing is affected, a speech pathologist may be able to assess your loved one and suggest strategies.

Make mealtimes easier and safer

For many people with Parkinson’s, swallowing and chewing difficulties can develop as the disease progresses.

If your loved one is coughing during meals, taking much longer to eat, avoiding certain foods, losing weight or finding tablets harder to swallow, it may be worth raising this with their GP.

A speech pathologist or dietitian can also provide help by suggesting safer textures, posture changes, smaller bites or other strategies. They can also help identify issues before they become more severe.

Support emotional wellbeing

People with Parkinson’s may experience anxiety, depression, sleep changes and fatigue. For some people, this can be one of the most difficult parts of the disease to manage.

It may help to have honest conversations with your family member about how they’re feeling. You could also encourage them to speak about their mood changes with their GP, a counsellor, or join a Parkinson’s support group. This can help them feel less alone and find new ways to manage what they’re experiencing.

How can a support worker help you and your loved one?

When caring for someone with Parkinson’s, it can become increasingly difficult to do everything yourself.

Building a care team for your family member may help share the practical and emotional load, and give your loved one consistent support from someone who understands their routine.

An independent support worker for an individual with Parkinson’s can provide help such as:

• Personal care
• Meal preparation
• Completing essential household tasks, inside and outside the home
• Providing transport to appointments
• Support with therapy or exercise routines recommended by health professionals
• Companionship.

This kind of Parkinson’s daily living help can make everyday routines feel safer and more manageable for your family member.

For you as a family carer or representative, reliable support can also bring relief. It may mean less time worrying about your loved one, and more time just enjoying spending time with them.

Finding a support worker for someone with Parkinson's

When you are looking for in-home support for Parkinson’s, the right personal qualities matter just as much as experience.

You may want to look for someone who is patient, calm under pressure and able to adapt when symptoms vary from day to day. A support worker who is flexible and observant may be better able to adjust the session around your loved one’s energy, mobility and mood.

Other important support worker qualities may include:

• Relevant experience: A background in personal care, mobility support or supporting people with Parkinson’s.
• A warm and respectful approach: This can help preserve your loved one’s dignity and independence by avoiding taking over tasks they can still do safely themselves.
• Good communication: This is especially important if the worker will update you after support sessions.

Independent support worker profiles on Mable include details like qualifications, experience, interests, indicative rates and reviews from other clients. You can also arrange a meet and greet to talk about your family member’s needs and decide if the worker is a good match.

Helping your loved one live well at home

Supporting a loved one with Parkinson’s at home is one of the most caring things you can do. But it can also carry some physical and emotional effects.

With the right information and support, the caring load can be shared, helping both you and your loved one manage the day-to-day changes Parkinson’s may bring.

You can find someone to help you share that load through Mable. With thousands of verified independent support workers, you can search for someone with the experience, warmth and reliability your loved one deserves.

Explore support worker profiles on Mable now, or reach out to the Mable support team for help getting started.