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People often think of Parkinson’s disease as simply a movement disorder, but it also leads to nonmotor symptoms — symptoms unrelated to movement. Many people living with Parkinson’s show behaviors that may be troubling to the person and their family members. These behavioral changes can be a symptom of Parkinson’s or a side effect of medication.
Members of MyParkinsonsTeam have described behavioral changes that range from annoying to life-threatening. Some people with Parkinson’s disease struggle with anger or impulsive behavior, hallucinations, or attention and motivation problems. These behavioral changes may affect quality of life and put people with Parkinson’s in danger.
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Read on to learn five behavioral changes to watch out for — plus how common they are, what might cause them, and how they can be treated.
Among the most startling changes for people with Parkinson’s are problems with impulsivity and obsessive behaviors. For example, some people start gambling or overspending. One MyParkinsonsTeam member stayed up all night shopping and bought 10 surfboards.
Many members of MyParkinsonsTeam have also found that their sex drive skyrocketed. One member said their increasing sexual needs were too much for their partner and strained their marriage. Another member, however, was happy with their “wonderful postmenopausal sexual awakening.”
Some behavioral changes are similar to obsessive-compulsive disorder (OCD) symptoms. These can cause real problems for people living with Parkinson’s. For example, one member said their partner started taking objects apart and putting them back together. It became a problem when it led to $3,500 in repair bills.
Other times, obsessive behaviors can take a more productive turn, such as becoming deeply involved in creative projects. One member began making wooden flags to sell, giving some earnings to organizations for veterans.
At least 14 percent of people living with Parkinson’s experience obsessive and impulsive behaviors. Impulsive behaviors are especially common in people taking both a dopamine agonist and levodopa/carbidopa.
Impulsive and obsessive behaviors are likely caused by Parkinson’s medications’ effect on dopamine. Sometimes called the “pleasure chemical,” dopamine is a chemical produced in the brain that’s important for movement and motivation. Parkinson’s disease damages dopaminergic neurons — cells that produce dopamine.
Dopamine agonist drugs act like dopamine in the brain. Increased dopamine activity helps with motor dysfunction, but it also boosts the brain’s reward system. This effect may cause obsessive symptoms and impulsive behaviors in Parkinson’s. The use of dopamine agonists has been linked to increased risk-taking behavior and gambling.
Always let your doctor know about new behaviors that trouble you. They may recommend decreasing or stopping the dopamine agonist to reduce these symptoms. Your doctor may prescribe a different medication or see if you might be a candidate for deep brain stimulation, a surgical treatment that uses electrical signals to help control movement symptoms.
Some people find it helpful to take antipsychotic medication or participate in cognitive behavioral therapy, a form of talk therapy that focuses on recognizing and changing unhelpful thought patterns. Support groups for impulsive behaviors such as gambling may also help.
People experiencing apathy lose interest in activities they previously enjoyed. They may also have less of an emotional response to what would otherwise be moments of joy, sadness, or anger. Experiencing apathy can be distressing for both the person living with Parkinson’s and their loved ones.
MyParkinsonsTeam members have shared some of their experiences with Parkinson’s-related apathy. One member said, “I find myself to be apathetic these last few months. It’s like feeling numb. Little do I care if things go wrong. Likewise, I fail to muster happiness when wonderful things happen, like the birth of a baby. I used to feel both joy and sorrow quite intensely.”
About 40 percent of people living with Parkinson’s disease will experience apathy in the course of disease progression. Some people with Parkinson’s begin losing interest in activities early on, even before they’re diagnosed.
The root cause of apathy in Parkinson’s is unclear. Apathy is a common symptom of depression. Around 35 percent of people with Parkinson’s experience depression or depression-like symptoms.
However, many people with Parkinson’s who don’t have depression do experience apathy, so there isn’t a clear cause-and-effect relationship. Apathy may be due to changes in reward centers in the brain.
One study showed that treatment with a dopamine agonist may help reduce apathy. Other studies found that exercise and mindfulness meditation helped some people with Parkinson’s feel less apathetic. If the apathy is related to depression, psychotherapy and medication may help with other depressive symptoms.
Anxiety during Parkinson’s can contribute to irritability and outbursts that can hurt people with Parkinson’s and their loved ones. A MyParkinsonsTeam member said they developed new intense jealousy and panic attacks when they couldn’t reach their partner by phone. Another member who’s a caregiver said their partner’s irritability led to daily arguments. Irritability can increase stress and may also make other behavioral symptoms and relationship conflicts worse.
Researchers estimate that 20 percent to at least 50 percent of people with Parkinson’s disease experience anxiety. Anxiety tends to begin early in the course of the disease and may worsen over time. Scientists aren’t sure whether panic attacks and irritability are caused by Parkinson’s or by mood disorders like depression and anxiety that occur alongside the disease.
Some MyParkinsonsTeam members have recommended lifestyle changes, such as living separately, or stepping away when irritability linked to Parkinson’s occurs. Antianxiety medication or cognitive behavioral therapy can sometimes reduce these symptoms. Ask your doctor for help with feelings of panic. They can help you find support groups and offer referrals for behavior therapy.
Among the most troubling symptoms in Parkinson’s disease are hallucinations and psychosis. Hallucinations may include:
One MyParkinsonsTeam member said that “shadows become demons and spirits.”
Another member shared that their husband experienced delusions, such as believing they had invited people over though they hadn’t spoken to them.
Hallucinations can begin in the early or later stages of the disease and may increase over time. About a third of people with Parkinson’s experience hallucinations early on, but by 10 years after diagnosis, nearly everyone with the disease has hallucinations.
The cause of psychosis in Parkinson’s isn’t entirely understood. However, changes to important brain structures could be partially responsible. Some cases of psychosis may be caused by long-term treatment with dopaminergic medication. Deep brain stimulation and surgery may also make psychotic symptoms worse in some people.
Treatment for Parkinson’s-related psychosis can involve adding antipsychotic medication or modifying the dose of dopaminergic drugs. Regardless, people experiencing these symptoms need careful attention and support from their loved ones and healthcare providers to prevent them from potentially harming themselves.
Newer medications are available to help treat hallucinations and delusions in people with Parkinson’s — often without worsening movement symptoms. If these challenges arise, talk with your doctor about whether one of these treatment options may be right for you.
Cognitive impairment — trouble with thinking, memory, or decision-making — and dementia are common in progressive neurological conditions, such as Parkinson’s disease and Alzheimer’s disease. Unlike in Alzheimer’s, however, people living with Parkinson’s experience issues with planning, attention, and motivation sooner than they develop dementia.
A few MyParkinsonsTeam members have talked about forgetting the day of the week. Others have mentioned losing important items like keys and phones.
Research suggests that between 18 percent and 41 percent of people with Parkinson’s develop dementia or some form of cognitive decline. In one study, researchers reported that up to 19 percent of people living with Parkinson’s already had mild cognitive impairment at the time of diagnosis. However, it can take as long as 20 years for cognitive impairment to advance to dementia.
The exact cause of impaired cognition in Parkinson’s isn’t fully understood. These changes may be linked to the neurological and chemical effects of the disease. Research also shows that sleep issues are common in Parkinson’s and are associated with cognitive decline.
Your doctor may recommend regular neuropsychiatric evaluations to see if cognitive symptoms are worsening. Certain medications and behavior management techniques also may help. Your doctor can recommend some treatments you can try.
Fortunately, there are treatments that can help. With ongoing medical care and support from loved ones, people living with Parkinson’s can take steps to manage behavioral symptoms. In some cases, people can channel certain behaviors — like increased energy or focus — into creative activities such as art, woodworking, or writing.
It’s just as important to address behavioral changes as it is to treat other Parkinson’s symptoms. Talk with your neurologist about specialists they recommend adding to your care team, such as psychologists, psychiatrists, behavioral therapists, social workers, and others who can support your mental and emotional well-being.
In addition, advice from others living with Parkinson’s can make a meaningful difference. Below are suggestions from MyParkinsonsTeam members for managing behavioral changes associated with Parkinson’s disease.
On MyParkinsonsTeam, people share their experiences with Parkinson’s disease, get advice, and find support from others who understand.
What tips do you have for managing behavioral changes? Let others know in the comments below.
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My husband is home with me and challenges everything. His reality is different from what is really going on. At first, I fought back but then I realized he has no control over any of his behavioral… read more
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