Caring for a loved one with Parkinson’s disease can be a challenging job, particularly as the disease progresses. This article from the Family Caregiver Alliance provides information about Parkinson’s, along with suggestions for caregivers.
What Is Parkinson’s Disease?
Parkinson’s disease (PD) is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinson’s disease results from the destruction of nerve cells in a part of the brain called the basal ganglia.
Different parts of the brain work together by sending signals to each other to coordinate all of our thoughts, movements, emotions, and senses. When we want to move, a signal is sent from the basal ganglia to the thalamus and then to the cerebral cortex, all different parts of the brain. Nerve cells in the brain communicate by using chemicals. A chemical (neurotransmitter) called dopamine is produced in a group of cells called the substantia nigra and is essential for normal movement. When the cells die, they can no longer produce and send dopamine, so the signal to move doesn’t get communicated. By the time a person starts to experience motor symptoms of Parkinson’s, they’ve already lost approximately 50% of their dopamine producing cells. People may experience non-motor symptoms from loss of other neurotransmitters up to ten years before motor symptoms are noticed.
Caregiving for People Living with Parkinson’s
Caring for a loved one with PD can be a challenging job, especially as the disease progresses. Former caregivers of a loved one with PD suggest doing the following (see more about these at the end of this fact sheet): Get prepared, Take care of yourself, Get help (don’t try to do it all yourself), Work to maintain a good relationship with your loved one, and Encourage the person with PD for whom you care, to stay active.
Preparing for caregiving starts with education. Reading this fact sheet is a good start. More resources are available to you in the Resources section of this fact sheet. Early Parkinson’s disease (PD) usually requires more emotional support and less hands-on care. It is a good time for family members/caregivers to educate themselves about the disease.
Who Gets Parkinson’s Disease?
Parkinson’s disease, documented in 1817 by physician James Parkinson, is the second most common neurodegenerative disease after Alzheimer’s disease. Estimates regarding the number of people in the United States with Parkinson’s range from 500,000 to 1,500,000, with 50,000 to 60,000 new cases reported annually. No objective test for Parkinson’s disease exists, so the misdiagnosis rate can be high, especially when a professional who doesn’t regularly work with the disease makes the diagnosis.
Since Parkinson’s is more common in people 60 years old and older, it is expected that the incidence of Parkinson’s will increase with the aging of the baby boomers. Although PD is more common in older persons, some people do begin to experience symptoms before they are 40 years old. Researchers have identified families who experience an increased incidence of PD, with some showing a genetic relationship from known PD genes. However, genetic causes of Parkinson’s are rare, only in approximately 6–8% of all cases. Most people diagnosed with PD do not have family members with PD. Recent studies show there may be a genetic predisposition to developing PD, but environmental exposure to certain toxins (many years prior to symptoms) may be needed to develop the disease. One common expression is “genetics loads the gun, but environmental [exposure] pulls the trigger.” Epidemiological studies are actively exploring the relationship between Parkinson’s disease and exposure to agents such as herbicides, pesticides, and other toxins.
All persons with Parkinson’s do not develop the same symptoms, and any symptoms that do develop may change over time as the disease progresses. People will experience both motor and non-motor symptoms. Typically PD motor symptoms start on one side of the body, and over time may progress to both sides. Often, one side is more affected than the other. The primary symptoms most commonly associated with Parkinson’s disease are:
- Tremor: Not all persons with PD develop tremor, but this is a common symptom. The tremor is described as a “pill rolling” action of the hand/fingers, usually most pronounced at rest, and may lessen with action, or movement. Tremor often starts on one side of the body—usually with the hand—but may also involve the arms, feet, legs, and chin.
- Rigidity or stiffness: In addition to making movement difficult, stiffness can also cause muscle aches. This symptom often is initially attributed to arthritis or pain syndromes, and persons often seek medical attention for “frozen shoulder” symptoms or “tennis elbow” and other orthopedic complaints.
- Slow movement (bradykinesia), loss of movement (akinesia): Symptoms present with a decreased arm swing on one side, or decreased ability to perform usual motor tasks at usual speeds. Those affected can lose the ability to make normal facial expressions, appearing “mask-like” to the person they are talking with. Family and friends may comment that the person smiles less or appears disinterested when in fact they are unable to make the facial muscles move in ways to help express what they are feeling.
- Balance and walking problems: Initially persons have difficulty walking at normal speeds or may find it difficult to fully lift a leg, causing the foot to “drag” behind the other foot. Or, they may take unusually small steps to move forward or use several tiny steps to turn around. Eventually postural problems result in a stooped torso with a noticeable shuffling gait. The resulting body imbalance can cause the person to stumble or experience near falls. The person may no longer instinctually reach their arm out to “break” their fall, putting them at greater risk for injury. Most people do not develop postural problems until many years after they have been diagnosed. Some individuals also experience episodes of “freezing” when they cannot move for several seconds or minutes. This is most common when they are approaching a doorway or other contained or small space.
Although there are no specific tests for Parkinson’s disease, there are several ways of making a diagnosis. Usually a diagnosis is based on a neurological exam that covers evaluation of the symptoms and their severity. If symptoms are serious enough, a trial test of anti-Parkinson’s drugs may be used. Brain scans may be made to rule out other diseases whose symptoms resemble Parkinson’s disease. At least two of the above primary symptoms are present when a diagnosis of Parkinson’s disease is made.
According to the Hoehn and Yahr scale, a commonly used system for describing how the symptoms of Parkinson’s disease progress, Parkinson’s disease has the following stages:
- Prodromal symptoms (those symptoms that may develop many years before diagnosis): Depression, anxiety, fatigue, disturbance of color vision, constipation, loss of smell acuity (hyposmia), problems with sleep, slowed thinking
- Stage I: Motor symptoms on one side of the body
- Stage II: Symptoms spread to both sides of the body
- Stage III: Balance starts to become impaired
- Stage IV: More difficulty with gait, freezing or small, fast steps. More problems that affect the center or midline of the body such as difficulty swallowing, balance, and increased non-motor problems
- Stage V: Unable to locomote independently, becoming dependent on a wheelchair or other mobility device
Recent research has identified primary non-motor symptoms of Parkinson’s disease that might be experienced up to 10 years before the motor symptoms appear. They are:
- Loss of olfaction (smell)/decreased acuity
- Sleep disorders (trouble falling asleep, staying asleep, yelling out, or acting out one’s dreams)
- Seborrhea (flakiness of skin around nose, forehead, chin)
- Depression: Approximately 40% of people with PD develop depression, which can be treated with medication and/or counseling. It is important for people with PD and their caregivers to report signs of depression to the physician. Persons with PD may not acknowledge their depression, and resist taking medication to treat this symptom.
People with Parkinson’s can develop some of the following symptoms as the disease progresses:
- Swallowing difficulties (usually a later symptom): At least 50% of people with Parkinson’s develop swallowing problems (dysphagia) that may cause the person to drool, to spill food or liquid from the mouth, or to send food to the back of the throat before it is ready to be swallowed. People with Parkinson’s and their caregivers should take care to watch for signs of choking due to food stuck in the throat, or increased congestion after eating. Due to difficulty coughing and clearing the lungs, people with Parkinson’s also run an increased risk of developing pneumonia. Swallowing problems can be helped with speech therapy.
- Speech problems (usually a later symptom): An estimated 60% to 90% percent of people with Parkinson’s will develop some difficulty speaking. A person with PD may speak very softly and may be hard to understand (hypophonia). Speech impairment is referred to as dysarthria and is often characterized as weak, slow, or uncoordinated speaking that can affect volume and/or pitch. The voice may sound hoarse or come out in short bursts. Often, speech problems worsen over time. Speech problems can be helped with speech therapy.
- Cognition issues (processing and using information): The majority of people diagnosed with PD will experience some degree of cognitive impairment that increases in severity over time. An individual may experience forgetfulness, distractibility, weakening executive functioning skills (problem solving, planning, multi-tasking), slower mental processing (recalling names, learning new information) and language and visual-spatial difficulties. All medications should be monitored, since high doses of some drugs used for Parkinson’s can cause cognitive impairment such as hallucinations or confusion.
Active diagnosis and treatment of the motor functions caused by Parkinson’s disease occur to a greater degree than do the diagnosis and treatment of life-impairing cognitive disease-related conditions. Often the family caregiver may notice cognition changes even before the care recipient may see them in him/herself. If you notice cognitive changes, it is valuable information to discuss with the care recipient and to share with their doctor. (See the Parkinson’s Disease Dementia section of this fact sheet for more information.)
Additional PD symptoms may include:
- Eyelid closure (dystonia of the eyelids can occur when a medication dose wears off)
- Difficulty writing (small handwriting)
- Urinary urgency and frequency (a later symptom: multiple trips to the bathroom, accidents)
- Excessive sweating
- Sexual problems (late symptom)