The Unique Challenges Faced by Caregivers of Patients with Parkinson's

Parkinson's disease (PD) is caused by the lack of dopamine, a chemical messenger that transmits signals from one brain cell to another. Dopamine is necessary for normal movement and thinking. In Parkinson’s disease, the brain cells that produce this substance die. These changes result in many symptoms that worsen over time.

In the US, nearly one million people have Parkinson’s disease. As this disease primarily appears in old age, this number is expected to increase over time as the baby boomer population all reaches retirement age.

Caregivers who care for patients with Parkinson’s must be prepared to face special challenges brought about by the unique features of the disease.

1. The incidence and the severity of the disease vary in a day, from day to day, and from one patient to another.

Think of the array of symptoms as a bag of beans. Each bean represents a symptom. You take a handful and spread it on a table. And that's your patient for that time of day or for that day of the week. It's hard to tell when a symptom will appear or how long a symptom will last. Patients may also show different sets of disease manifestations.

The best way to tackle this challenge is to learn as much as you can about the disease and how you can help your patient. Read brochures or get information from credible sources online.

2. Although symptoms vary, Parkinson’s disease primarily affects movements.

Patients cannot move fast, spontaneously, and smoothly. They become stiff, robotic, or zombie-like. You will likely see them drag their feet as they walk. This symptom is known as the shuffling gait.

At times they freeze when they attempt to make a sudden turn. This mobility problem makes the patient accident-prone and at risk for falls. Caregivers must strike a balance between letting patients become independent and keeping them safe at the same time.

3. The slowness of the patient's movement can be a challenge, too.

Caregivers, especially those who care for several patients at the same time, must learn how to multi-task to carry out all that they need to do in their shift. Caring for a patient with mobility problems caused by Parkinson's disease is challenging because it reflects on the caregiver as having poor time management skills. But it isn’t so.

The workaround to this problem is to take advantage of their nap time or bedtime to do your tasks away from the bedside. Another way is to remove or reduce possible causes of falls.

4. Because the lack of dopamine in the brain disrupts nerve signals, the patient may also experience depression.

People with depression are unable to enjoy their experiences. They feel sad and cry for extended periods. Sometimes they are expressionless even if they feel down. Changing moods is also apparent, which makes it challenging for physicians to diagnose their mental condition.

Depressed patients usually neglect hygiene measures and have difficulty concentrating. They feel hopeless and worthless. Depression can happen even before the patient experiences difficulty moving.

Thoughts of suicide are common, too. Since patients think of self-harm, you must be alert to worsening signs. Once they start talking about hurting themselves, report it immediately to the supervisor so that the healthcare team can institute necessary suicide precautions.

5. Patients experience new and dangerous symptoms later in the course of the disease.

In the later stage of the disease, patients become more dependent on their caregivers for their daily living and their safety. Advanced symptoms include difficulty swallowing and speaking and declining mental abilities.

Swallowing problems can result in aspiration or the condition where water or food particles enter the lungs instead of the stomach. Communication becomes a challenge, too. Patients with PD talk slow and softly. Sometimes they make short bursts. You may find it very difficult to understand what they are saying. Be supportive and anticipate their needs.

As the disease worsens, the patient may also lose their mental abilities. They will have difficulty processing information and become forgetful and easily distracted. It is also common for patients with late-stage PD to have trouble with problem-solving, planning, and making sound judgments.

As their caregiver, you must keep them safe at all times and ensure that they are well hydrated and adequately nourished. Work with the entire healthcare team to address the symptoms. Help the patients take their medications on time and be their reliable companion.