man playing guitar with granddaughter

What caregivers of Parkinson’s patients need to know

October 09, 2018 | UCI Health
man caring for parent with parkinson's disease

Parkinson’s disease is physically and emotionally challenging not just for patients, but also for their caregivers.

Education about the progressive disease is vital.

“Caregivers and family members need to know as much and even more about the disease than the person who has it,” says movement disorders expert Anna Morenkova, MD, PhD, an assistant professor with the UCI School of Medicine’s Department of Neurology.

It is especially important to know about potential behavioral and emotional changes in the Parkinson’s patient, not just the physical ones.

“Expecting the same behavior as before diagnosis with Parkinson’s disease may be unreasonable,” says Morenkova.

Know what to expect

The disease and its treatments can cause emotional, behavioral or psychological symptoms that need to be brought to the attention of the patient’s healthcare provider. These include:

  • Anxiety and depression: During the variable course of the disease, 40 percent to 50 percent of Parkinson’s patients will experience anxiety and or depression at one time or another.
  • Personality changes: Changes in the brain brought on by the disease may also result in personality changes such as rigidity, carelessness or introversion.
  • Impulsive/compulsive behaviors: About 15 percent of Parkinson’s patients may also engage in impulsive or compulsive behaviors that can range from impulsive internet use to sexual preoccupations, hoarding, gambling, charity donations and eating.
  • Hallucinations: These can be mild or severe, pleasant or frightening. Patients who experience them may be aware that they’re not real. But some patients have been known to call police when frightened by visions of strangers in their house or they may get injured while trying to flee imaginary danger.

Family members need to know that certain behaviors are caused by the disease or by the very medications used to treat it.

Recognizing Parkinson's-related changes

For example, a wife may be irritated by her husband’s sudden lack of interest in playing golf or visiting neighbors with the same frequency as before his diagnosis with Parkinson’s disease even though his mobility hasn’t been limited.

But such apathy may be a symptom of depression. A family member also might not recognize a Parkinson’s sufferer’s excessive Internet use as an impulsive behavior driven by the drugs used to control movement problems.

Patients may also try to hide some of these impulsive and compulsive behaviors from caregivers, family members and doctors, either through embarrassment or because they enjoy them so much that they fear being taken off the medication responsible for causing them. They also may fear greater immobility if they go off the drug.

By becoming educated about these issues, caregivers can learn to recognize the changes in the Parkinson’s patient’s behavior and emotions, which will help in their own reactions to these changes and empower them to bring these problems to the attention of healthcare providers.

How caregivers can get support

In the advanced stages of Parkinson’s disease, patients’ symptoms may overwhelm the entire household, Morenkova says. UCI Health neuropsychologists offer joint and separate support sessions for caregivers and patients. Therapists also teach techniques for coping with some of the more difficult behaviors. Caregivers and loved ones also need to take care of themselves, including scheduling time away from the patient. Morenkova recommends:

  • Calling on trusted family and friends to provide a break for a few hours periodically, or to seek professional, in-home help.
  • Continuing to live life, to go out with friends, take a hike, create something and as much as possible do whatever they did before the diagnosis to enjoy life.
  • Seeking the support of friends, family members, groups or therapists.

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