10 Tips on Caring for Your Loved One with Parkinson’s Disease

If you have a loved one with Parkinson’s disease, it can be challenging and daunting. This progressive neurodegenerative disease affects a person’s motor skills and can also impact their mental health, becoming increasingly more serious in the long term. It can be managed with medication, but patients typically require a high level of care and support. We have compiled a list of tips for caring for a loved one with Parkinson’s disease so that you can feel equipped to manage this difficult journey and to provide the best possible support for your family member or friend.

What is Parkinson’s disease?

Parkinson’s disease, also known simply as Parkinson’s, is a neurodegenerative disorder. It affects specific areas of the brain and impacts a person’s motor skills. It can also lead to cognitive impairment, depression, sleep disorders and other symptoms. 

Parkinson’s is a progressive degenerative condition, meaning that it becomes worse over time. It is characterised by the degeneration of nerve cells in the middle area of the brain. This causes a lack of dopamine, which is the chemical responsible for controlling movement in the body. This is why a common symptom of Parkinson’s is shakes or tremors. 

Parkinson’s disease in Australia

In Australia, there are approximately 80,000 people living with Parkinson’s disease. The condition occurs in approximately four people in every 1000. Older people are more likely to be diagnosed with the condition, with one in 100 people over the age of 60 having the disease. 

What causes Parkinson’s disease?

There is no known cause of Parkinson’s disease. Researchers are investigating several theories about what might trigger the condition, including environmental factors such as toxins and chemicals, or head trauma. Genetic factors may also play a role in the condition developing in individuals. 

Symptoms of Parkinson’s disease

Symptoms of Parkinson’s disease that you can watch out for include:

• Tremors and shaking
• Rigidity or muscle stiffness
• Poor posture
• Shuffling gait
• Slowness
• Freezing, or a sudden inability to move
• Fatigue
• Loss of sense of smell
• Constipation
• Loss of volume of speech
• Apathy
• Depression

In the later stages of the condition, additional symptoms can appear, such as hallucinations, paranoia and delusions. 

Symptoms of Parkinson’s typically appear only when the disease has progressed significantly. Normally, by the time a person has been diagnosed with Parkinson’s, 70 per cent of their dopamine-producing cells have stopped working. 

How is Parkinson’s disease diagnosed?

If you believe your loved one may be suffering from Parkinson’s, it’s important to take them to their doctor early so the process of diagnosis can begin. Getting a Parkinson’s disease diagnosis can take some time, due to the lack of tests that can definitively detect the condition. 

When Parkinson’s is suspected in a patient, doctors will often conduct a range of tests, including blood tests, scans and X-rays, to rule out other conditions. They will also consider the person’s symptoms. Parkinson’s disease can only be diagnosed by a trained neurologist who specialises in the condition.

How is Parkinson’s disease treated?

Although Parkinson’s disease cannot be cured, the symptoms can be managed through a range of treatment options. Medication will typically be used to improve the availability of dopamine in the brain. Correcting the dopamine deficiency can result in smoother and more controlled movements for the patient.

The medication prescribed will depend on the individual patient. Some of the different types include:

• Levodopa – dopamine replacement therapy
• Dopamine agonists – mimic the action of dopamine
• COMT inhibitors – used along with levodopa. This medication blocks an enzyme known as COMT to prevent levodopa breaking down in the intestine, allowing more of it to reach the brain
• Anticholinergics – block the effect of another brain chemical (a neurotransmitter called acetylcholine) to rebalance its levels with dopamine
• Amantadine – has anticholinergic properties and improves dopamine transmission
• MAO type B inhibitors – prevent the metabolism of dopamine within the brain.

Medication cannot stop the progression of the disease. Types of medication and doses will be reviewed by the patient’s neurologist over time, and they will make adjustments based on results of the prescription and any side effects being experienced.

Some Parkinson’s disease sufferers can also benefit from deep brain stimulation surgery. This is a surgical procedure during which the surgeon places an electrode in the part of the brain most affected by Parkinson’s disease. The electrode stimulates the brain using electrical impulses, which can reduce the symptoms of Parkinson’s disease.

Tips on Caring for Your Loved One with Parkinson’s disease

Caring for a loved one with Parkinson’s disease can be challenging. As a progressively degenerative disease, Parkinson’s takes a continual toll on the body and mind of patients, which can be difficult to witness as a family member or friend. 

It is vital that people caring for someone with Parkinson’s disease also remember to take care of themselves, to maintain good mental health and support networks, and to take advantage of time away from caring duties.

There are some key things that carers of people with Parkinson’s disease can do to provide support to their loved one. Keeping these tips in mind will make the process easier for both patient and carer, and ensure that their close and loving relationship can be maintained.

1. Learn more about Parkinson’s

When a loved one receives a diagnosis of Parkinson’s disease, it is normal for family members and friends to be distressed and unsure of what this will mean for their quality of life moving forward. It is valuable to find out more about the condition by doing some research and accessing resources via your healthcare professionals and organisations such as Parkinson’s Australia.

Parkinson’s disease affects everyone differently, so you should speak with your loved one’s doctors to learn about their own individual circumstances. You should also educate yourself about some of the special difficulties associated with living with Parkinson’s, and the likely trajectory of the condition in the long term. Being mentally prepared for certain symptoms can help you to feel ready and equipped to manage these.

2. Monitor for changes in symptoms

Parkinson’s symptoms can change over time as the condition progresses. All people who are involved in providing care for a person with Parkinson’s should be aware of the common symptoms associated with the disease and monitor for these. It can be helpful if you can attend some of the appointments with your loved one’s neurologist to discuss any new symptoms or changes in behaviour, as sometimes a person suffering from Parkinson’s disease can find it difficult to identify these changes in themselves.

3. Discuss support with your loved one

In the early stages of a Parkinson’s disease diagnosis, it can be a good idea to have an open and honest discussion with your loved one about the condition, the challenges associated with it, and the level of support and assistance they want and need moving forward. Many people find it hard to come to terms with receiving help, especially if this means a loss of independence. Talking with your loved one about some of the things you can do to help them, and the many ways that they can still manage their own life, is very important. 

Always remember when dealing with a person with Parkinson’s disease to allow time and space for them to do things for themselves when possible. Avoid rushing your loved one or stepping in to assist too early. 

4. Assist with medication

For Parkinson’s patients, medication regimes are individually tailored to specific needs. Medication will also be adjusted as the disease progresses, with different types of therapies, different doses, and different frequencies. Keeping up with these changes can be challenging for anyone, and it’s a good idea for carers to be aware of medication arrangements and be able to assist where necessary. It can be helpful to use a medication box or pill planner to keep track of doses. If your loved one is finding it difficult to take medication, you may be able to assist them, or you can speak with the doctor about changing the format (for example, from a large pill to a liquid). 

5. Help with household tasks

Parkinson’s disease causes tremors and shakes, which can impact on a person’s ability to perform daily household tasks. Activities such as cooking and cleaning can become difficult when your motor skills are being affected. A good way to assist your loved one living with Parkinson’s is to help them with these sorts of household chores. This may be working with them to prepare meals that they enjoy, or cooking some dinners that are easy to reheat and storing them in their fridge. These sorts of simple things can help the person with Parkinson’s disease to maintain their independence by remaining in their own home.

6. Provide transport to appointments

All Parkinson’s disease patients will require regular check ups with their neurologist. They may also have a range of other healthcare practitioners that they visit frequently. However, the condition will often prevent people from being able to drive themselves, due to the possibility of freezing and muscle stiffness behind the wheel. This means people with Parkinson’s may rely on their carers and loved ones to transport them to appointments. 

7. Assist with personal care

Loved ones can assist people with Parkinson’s disease with their personal care at home. Some personal care activities that can become difficult for Parkinson’s sufferers include dressing, bathing, toileting, and completing tasks such as doing their hair or shaving. It is important for a person’s dignity and sense of self that these essential activities do not get neglected. 

8. Prepare the home

When a person is diagnosed with Parkinson’s disease, there are some modifications that they may want to make around the home to prepare them for different stages of the condition. These could include installing grip rails in the bathroom, ramps in place of steps, and decluttering spaces to make them easier to navigate. As a loved one, you can assist in this process and ensure that the home is a safe and familiar environment for the person with Parkinson’s. 

9. Find a support group

There are many support groups available that cater for both people with Parkinson’s disease, and their friends and family. These groups give people the opportunity to share their experiences, exchange advice and information, and provide encouragement through what can be a challenging journey. Research support groups in your local area or ask your doctor for recommendations. Carers can also greatly benefit from these sorts of groups and support networks.

10. Consider legal and financial arrangements

In the earliest stages after receiving a confirmed diagnosis, people with Parkinson’s should have an open and honest discussion with loved ones about their healthcare and financial preferences. This is because, as this disease progresses, Parkinson’s sufferers may be unable to advocate for themselves. Putting in place arrangements, such as a Power of Attorney, are important to ensure that the wishes of the person with Parkinson’s can be followed. 

Is Parkinson’s disease covered by NDIS?

The NDIS funds several services for people with Parkinson’s Disease. These include speech and occupational therapy, physiotherapy, personal care support, nutritional support, and behavioural support. Parkinson’s disease falls under List B of NDIS eligibility, or conditions primarily resulting in neurological impairment. 

Following a Parkinson’s diagnosis, it is a good idea to start exploring the NDIS and finding out how it can help your loved one to access funding and support.

How Homage Can Help

Caring is extremely rewarding, but it can also be challenging. This is especially true for a difficult, progressive disease such as Parkinson’s. To ensure that you can maintain a close and loving relationship with your loved one, while also providing the highest level of care, Homage offers flexible and quality services to assist. 

Homage’s Care Professionals can provide a range of services, including Light Housekeeping, Disability Support Services, Medical Escort and more. You may use your NDIS funding to engage our disability support services.

Caring for anyone with a serious medical condition is challenging. However, by following some of the above tips for carers, you can ensure that your loved one is well supported as through their journey with Parkinson’s disease. Additional support is available to help you and your loved one.