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People often think of Parkinson’s disease as simply a movement disorder, but it also has nonmotor symptoms — symptoms unrelated to movement. Many people living with Parkinson’s show behaviors that are troubling to the person and their family. 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 that can affect their friends and family members. Others have hallucinations that cause them to act in ways that don’t make sense to their caregivers. In addition, attention and motivation problems are common and make everyday tasks harder. These behavioral changes may impact quality of life and put people with Parkinson’s in danger.
Fortunately, there are treatments that can help. With careful monitoring and support from loved ones, people living with Parkinson’s can manage these behavioral symptoms. In some cases, people are able to channel certain behaviors — like increased energy or focus — into creative activities, like art, woodworking, or writing.
Read on to learn about five behavioral changes to watch out for. You’ll also discover how common they are, what causes 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 has 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 things apart and putting them back together. It became a problem when it led to $3,500 in repair bills.
Other times, the obsessive behaviors can be productive, like getting really into 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. Problems with impulse control and symptoms of OCD may show up after a person starts taking dopamine agonist medications.
Impulsive behaviors are especially common in people taking both a dopamine agonist and levodopa/carbidopa.
Impulsive and obsessive behaviors are likely caused by the effect of Parkinson’s medications on dopamine in the brain. 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 in the brain helps with motor dysfunction. But it also boosts the brain’s reward system, which 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 are troubling you. Decreasing or stopping a dopamine agonist often helps to ease 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, which is a type of talk therapy that helps you change unhelpful thought patterns. Support groups for impulsive behaviors such as gambling may also help.
People experiencing apathy lose interest in things 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 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 at some point in the course of disease progression. Some people with Parkinson’s begin losing interest in activities early on in the disease, before they’re even diagnosed with Parkinson’s.
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 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 caring for a partner with Parkinson’s said their partner’s irritability led to daily arguments. Irritability can increase stress in people with Parkinson’s and may also make other behavioral symptoms and relationship conflicts worse.
Between 20 percent and 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 disease or by mood disorders like depression and anxiety that occur alongside Parkinson’s.
Some MyParkinsonsTeam members recommended lifestyle changes like living separately or stepping away when Parkinson’s irritability occurs. For some people, anti-anxiety medication or cognitive behavioral therapy can help with 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’s husband had delusions that the couple invited people over when they hadn’t even spoken to them.
Some types of hallucinations are more common than others. For example, visual hallucinations occur in 22 percent to 38 percent of people with Parkinson’s. Up to 22 percent may hear sounds or voices that aren’t there, known as auditory hallucinations.
Hallucinations can begin in the early or later stages of the disease and may increase over time. Only about 30 percent of people with Parkinson’s experience hallucinations early in the disease course. 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.
There are now newer medicines made just for treating hallucinations and delusions in people with Parkinson’s. These options can help without making movement symptoms worse, so it’s a good idea to talk to your doctor if these problems come up.
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.
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 root cause of impaired cognition in Parkinson’s is unclear. It may be caused by the neurological and chemical effects of the disease. Scientists have found 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. There are also medications and behavior management techniques that may help. Your doctor can recommend some for you to try.
It’s just as important to get care for behavioral changes as it is to seek treatment for other Parkinson’s symptoms. Talk to your neurologist about which providers they recommend adding to your care team. This may include psychologists, psychiatrists, behavioral therapists, social workers, and others.
In addition, advice from other people with Parkinson’s can make the difference between living and thriving. The following are suggestions from MyParkinsonsTeam members to manage the behavioral changes in Parkinson’s disease.
Take the quiz: Is Your Parkinson’s Causing Behavioral Changes?
On MyParkinsonsTeam, the social network for people with Parkinson’s disease and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease.
Have you or a loved one had behavioral changes with Parkinson’s? What tips do you have for managing those changes? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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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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