How to Care for a Loved One with Parkinson’s Disease

What is Parkinson’s Disease?

Parkinson’s disease (PD) is a progressive neurological disorder that results from the degeneration of neurons in a region of the brain that controls movement. This degeneration creates a shortage of the brain signalling chemical (neurotransmitter) known as dopamine, which causes the movement disorders that characterise the disease. It is named after James Parkinson, the London doctor who first reported the symptoms in 1817.

This degenerative disease affects more than 80,000 Australians, and its incidence increases to one in 100 over the age of 60. The diagnosis of Parkinson’s disease can be life-changing for both the person diagnosed and their loved ones.

Parkinson’s disease is a journey that affects each person differently and is considered progressive, meaning that symptoms get more severe over time. The rate of progression is often difficult to predict and changes from person to person. That said, people with PD can live full and meaningful lives, especially if they manage their symptoms and safety appropriately and tap into the right care and resources. 

At The CareSide we understand that living with Parkinson’s disease can be difficult as it is a chronic, neurodegenerative disease. For this reason, we offer high quality at-home Parkinson’s services to make life easier for people with PD and their loved ones. Contact us if you want to know how we can help you. 

Causes of Parkinson’s Disease

The exact causes of Parkinson’s disease are not yet known, and most cases are attributed to a combination of genes, environmental and lifestyle influences. Here are some of the causes and risk factors that professionals have considered to play a role in developing Parkinson’s disease:

Genetic predisposition

Although some cases of Parkinson’s appear to be inherited, 90% of people with Parkinson’s have no known genetic link. It is not yet clear how genetic mutations cause Parkinson’s disease, although several genes have been linked to it. Therefore, genetic factors appear to be the cause of only 10% of cases, especially among people with early-onset disease.

Traumatic brain injuries

Previous head injuries have been associated with an increased risk of developing Parkinson’s disease years after the injury. These injuries are considered a risk factor for several neurodegenerative diseases, with the strongest evidence being related to the development of PD. However, the underlying mechanisms are unclear.

Toxin exposure

Exposure to toxins in the environment has been linked to neurodegeneration associated with Parkinson’s disease. These include pesticides, solvents, pharmaceuticals, heavy metals, and other pollutants. Although environmental exposure to these and other toxins is of continuing research interest, it is difficult to determine whether any substance is the culprit. As stated before, most cases of Parkinson’s disease are the result of a complex interaction among all of these factors.

Ageing

Age is the main risk factor for the development and progression of Parkinson’s disease. Ageing is a natural process involving dysregulation of several pathways, such as oxidative stress, mitochondrial dysfunction, autophagy, and neuroinflammation, many of which are also implicated in neurodegenerative conditions. 

Other risk factors

There are other factors that increase a person’s risk of developing Parkinson’s, including certain medications that cause drug-induced Parkinsonism and whose symptoms ameliorate when the medication is stopped; other progressive brain diseases, such as multiple system atrophy, supranuclear palsy, or corticobasal degeneration; and cerebrovascular disease, in which a series of small strokes cause damage to the brain. 

Parkinson’s symptoms

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Symptoms include motor symptoms and non-motor symptoms. The type, number, severity, and progression of Parkinson’s disease symptoms vary greatly. Each person is affected differently and may be affected by only some symptoms. 

Most common motor symptoms of Parkinson’s disease.

Symptoms of Parkinson’s disease result from the progressive degeneration of nerve cells in the brain and other organs, such as the gut, that produce a neurotransmitter called dopamine. This results in a deficiency in the availability of dopamine, which is necessary for smooth and controlled movements. `

The range of symptoms and severity levels vary significantly from person to person and are often shared with other similar diseases. Some of the most common motor symptoms of PD are: 

Tremor: Tremor in hands, arms, legs, jaw, or face is one of the main symptoms of Parkinson’s disease.

Rigidity: stiffness of limbs, neck, and trunk. 

Bradykinesia: slowness or loss of spontaneous movement and decreased range of motion. Bradykinesia can be unpredictable when it occurs and can be the most disabling symptom, as it can severely affect simple everyday life activities, resulting in loss of independence. 

Difficulty in maintaining balance: as a consequence, postural instability, impaired balance and coordination appear. People with Parkinson’s disease may develop a forward or backward lean and may fall easily, which can sometimes lead to injury. 

Other motor symptoms of Parkinson’s disease include masked facial expression, decreased blinking, speech issues, problems swallowing, eye problems, dystonia (involuntary muscle contractions), and walking issues. 

Nonmotor symptoms in Parkinson’s disease

Constipation: Constipation: This symptom is present to some degree in most patients, although it can be controlled with lifestyle changes, such as adding more fibre to the diet, or with medical treatment. 

Hyposomia: Loss of part of the sense of smell is also common in Parkinson’s disease. It may secondarily affect the sense of taste, since smell is involved in the sense of taste. 

Mood disorders: Psychological problems, such as depression and anxiety, can be an early sign of Parkinson’s disease and may appear much earlier than motor symptoms.

Urinary frequency/urgency: People with Parkinson’s often feel the need to urinate more urgently, even when their bladder is not very full. 

Apart from those mentioned above, other non-motor symptoms include cognitive changes, such as memory or planning difficulties, sleep disturbances, fatigue, vision problems, and speech and swallowing problems.

Parkinson’s Disease treatment options

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There is no cure for Parkinson’s disease nor a standard treatment. Treatment for each person with Parkinson’s disease may vary depending on their symptoms. 

Treatment options are generally grouped into pharmacological treatment and non-pharmacological treatment options, such as exercise therapy, physical therapy, occupational therapy, speech therapy, and surgery. 

Pharmacological therapy focuses on maximising the availability of dopamine in the brain. Medication regimens are individually tailored to the specific needs of the individual. Parkinson’s medications belong to these categories: 

  • Levodopa: dopamine replacement therapy. Levodopa is a chemical that the brain can convert directly into dopamine.
  • Dopamine agonists: can act like dopamine in the brain.
  • COMT inhibitors: used along with levodopa. This medication blocks an enzyme known as COMT to prevent levodopa from being broken down in the gut, allowing more to reach the brain.
  • Anticholinergics: They block the effect of another brain chemical (a neurotransmitter called acetylcholine) to rebalance its levels with dopamine.
  • Amantadine: This drug increases the amount of dopamine released by neurons.
  • MAO-B inhibitors: MAO-B is an enzyme in the brain that breaks down dopamine. These drugs prevent that breakdown so that dopamine lasts longer.

There is no pharmacological treatment for Parkinson’s disease that is better than the others. Each person has different symptoms, disease progression, lifestyle, and physical tolerance, and all of these factors will affect the timing, type, dosage, and combinations of medication.

Caring for someone with Parkinson’s

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Parkinson’s disease affects the diagnosed person and their entire family and environment, especially when you are the primary caregiver for a loved one who has been diagnosed with the disease. 

The symptoms and effects of Parkinson’s disease, such as fatigue and difficulty getting around, can make daily life difficult. Therefore, the more comfortable and uplifting your environment is, the more positive your attitude will be.

At The CareSide, we recommend making life at home as easy as possible, adapting to the person’s needs, and giving them the tools they need to stay healthy and active according to their abilities. Taking care of your own health is also an important part of the caregiving process. If you are in need of respite care or more specialised nursing care, don’t hesitate to contact us to learn more.

Personal care – Hygiene, dressing, feeding

Safety and comfort are key, so we recommend keeping daily toileting tasks as simple as possible for them. Showers are more accessible than tub baths and also safer against falls. In addition, electrical devices, such as electric toothbrushes, can help make daily hygiene tasks easier. 

Dressing

Look for garments that are easy to put on, such as those with elastic waistbands or velcro instead of buttons or laces. As a caregiver of a person with Parkinson’s, it is important to lay out the clothes ahead of time, and let them dress themselves as much as possible. 

Feeding

Diet is a relevant aspect for all people, and certainly also for people with Parkinson’s disease. At The CareSide, we have extensive experience caring for people with Parkinson’s disease, and we know that proper nourishment is essential. 

First, a common problem associated with PD is constipation, so a diet rich in fibre is recommended. Occasionally, people with Parkinson’s may have difficulty swallowing. In these cases, moist and soft foods are highly recommended, and those that crumble easily should be avoided. If liquids cause coughing or choking, thickened drinks are a good and safer option. 

Some people with Parkinson’s find eating a very exhausting task. In these cases, it is best to prepare smaller meals more frequently. 

Communication

Parkinson’s disease can impact communication in many ways. Most people with Parkinson’s experience a soft voice volume and may be difficult to hear. Loss of automatic facial expression can be misinterpreted as boredom, anger, or sadness. Mood changes in Parkinson’s, such as apathy, depression, or anxiety, can also affect communication.

Some recommendations for making communication with a person with Parkinson’s easier are to reduce and eliminate distractions, such as television or radio, maintain eye contact, be close to the person when speaking and give the person the time they need to respond. 

Although conversations may require a concentrated effort on both sides, communication is important to continue socialising in order to maintain emotional well-being and help prevent the possibility of depression and/or social isolation. 

Coping with fatigue

Many people with Parkinson’s experience excessive daytime sleepiness. They often report a loss of energy and chronic fatigue, disrupting planned activities and schedules.

In these situations, the best option is to schedule fewer activities per day, divide them into shorter periods of time, include breaks, or change the tasks to simpler ones. 

When feeling fatigued, the person with Parkinson’s may need more help, so caregivers should be aware of this and adapt to the person’s energy. 

Making daily life easier

Even simple, everyday tasks can become more difficult as Parkinson’s disease progresses. Here are some tips for adapting home to make life easier: 

Avoid accidents and hazards: For example, removing unnecessary obstacles and furniture to have wide walkways, replacing stoves and electric blankets for safer options, installing smoke detectors, among others. 

Equipment that makes life easier: installing support bars, lamps that turn on with a sound or a touch, an electric bed, a food processor to avoid having to cut or peel food by hand, non-slip mats…. All these items will make the life of the person with Parkinson’s easier and help them stay independent.  

Make domestic chores easy to perform: This can be achieved by taking some actions, such as locating frequently used items where they are quickly accessible, labelling drawers and cabinets, or using electronic items (toothbrushes, shavers), for example. 

Activities and exercise

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A diagnosis of Parkinson’s disease should not prevent a person from having a social life, engaging in enjoyable activities, and exercising. 

On the contrary, staying active and exercising is beneficial to the mental health of the person with Parkinson’s, regardless of the stage of the disease. As the disease progresses, these activities and exercises should be adapted to the person’s abilities and capabilities. 

Exercise has been shown to improve mobility in people with Parkinson’s disease. Those who begin exercising earlier experience a significant slower decline in quality of life than those who start later. 

Physical exercise

A sedentary life is not beneficial for anyone, much less for those affected by neurodegenerative diseases. Exercise has been shown to improve mobility in Parkinson’s patients. Those who start exercising earlier experience a significantly slower decline in quality of life than those who start later. 

Some recommended activities for people with Parkinson’s include exercises to counteract muscle stiffness and increase range of motion, breathing exercises, taichi, facial exercises and dance activities, to name a few. 

Leisure activities

People with Parkinson’s may be discouraged from participating in activities they once enjoyed because of their symptoms. However, continuing to participate in enjoyable, meaningful activities is important for people with Parkinson’s. If they become complicated, it is always a good idea to adapt them in some way to the person’s needs, rather than giving them up completely. 

These activities will help reduce stress and help the person with Parkinson’s continue to socialise, interact with others and do tasks they enjoy or have fun doing, contributing to their physical and mental well-being. 

Everyday caregiving tasks can be challenging for both the person with Parkinson’s and the caregiver, but they also bring you together. At The CareSide we have the best professionals to provide the best value home care in Australia. If you need home care assistance for a loved one diagnosed with Parkinson’s disease, contact us.

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