More support needed for people with Parkinson’s and anxiety: Study
Anxiety reported to be worse than motor symptoms for some patients
Anxiety is a common problem for people with Parkinson’s disease and can cause substantial difficulties in patients’ day-to-day lives, a new study based on patient interviews highlights.
In some cases, anxiety can be more of a problem than motor symptoms: “I would put up with some of the motor disability if it replaced the anxiety,” one patient said.
The study’s findings highlight a need for more work to be done to provide support to help people with Parkinson’s manage the psychological hurdles of the disease, researchers said.
“Anxiety is poorly understood, underdiagnosed, and undertreated,” the team wrote, adding, “This study explored the experience of anxiety for people with Parkinson’s (PWP) to inform future research and interventions.”
The study, “The experience of Anxiety for people with Parkinson’s disease,” was published in npj Parkinson’s Disease.
Anxiety tantamount to a physical symptom for many patients
Living with a chronic illness can be stressful and taxing, and Parkinson’s disease itself can alter how the brain processes emotions. However, there has not been much formal research into how Parkinson’s patients experience anxiety — defined as persistent feelings of fear or worry, marked by a tendency to overestimate potential risks while underestimating one’s own abilities.
To learn more, a quartet of scientists in the U.K. conducted interviews with 22 people with Parkinson’s, all of whom self-reported anxiety as a current symptom. The patients, half of whom were women, ranged in age from 43 to 80, and more than 90% were white individuals. Most were married and living with a spouse, and the majority were retired.
At the time of the interview, 10 patients met criteria for clinically relevant anxiety based on standardized measures, and two had been previously diagnosed with clinical depression.
Many of the patients reported that, during times of high anxiety, they felt as if their sense of themselves was altered. For example, one patient described anxiety as a tendency to “just go completely cold,” and another said it was “a condition, a state of mind, a state of being.”
For almost all of the individuals interviewed, however, anxiety wasn’t just cognitive, but instead tantamount to a physical experience. One patient reflected, “I don’t know if it’s the anxiety or the Parkinson’s, but I feel like I’m shaking on the inside.”
“For most, anxiety came in episodes (‘waves’) alongside other [Parkinson’s] symptoms, whereas for some anxiety was perceived as a reaction to them,” the researchers wrote.
Patients generally reported that feelings of anxiety would vary over time, worsening at some points — particularly when patients felt fatigued — but easing at others. Most patients reported feeling that anxiety was at least partly caused by their disease: “It’s definitely got worse with Parkinson’s, so I’m sure it’s to do with the illness itself,” one patient said.
For many, anxiety was a bigger problem in day-to-day life than other symptoms of the disease.
“Anxiety stops me doing things […] I am depressed about that,” one patient said, while another commented that anxiety “ruins a lot of things because I can look forward to something and then get there and it’s so awful, I have to leave […] it limits what I can do.”
Study highlights need for Parkinson’s-specific treatments
Patients commonly reflected feeling worried about how they would be perceived by others, highlighting concerns that anxiety could lead to isolation and withdrawal.
Most of those interviewed said that connecting with others dealing with similar issues, and particularly individuals with Parkinson’s, could be a great help in managing these problems.
“They’re all diagnosed quite a long way ahead of me […] they’ve normally got stories that oh yes, that happened to me, and I did this, which is really helpful,” one patient said.
Other coping strategies included positive self-talk — such as “I’ve done this before I can do it again” — and practicing mindfulness to keep attention focused on the present moment.
“You just try and live in the present all of the time,” one patient said.
Most patients had not sought professional help to manage their anxiety, and they generally reported that this topic did not come up in discussions with healthcare providers. There was a reluctance by many patients to try anxiety medications due to concerns about side effects or withdrawal effects.
Among those who had sought interventions such as counseling or cognitive-behavioral therapy (CBT), reviews were mixed — some patients reported positive experiences, but others said these interventions had been unhelpful, often highlighting a lack of therapies specifically tailored toward the unique challenges faced by people with Parkinson’s.
Further trials of [cognitive-behavioral therapy] protocols adapted for [Parkinson’s]-specific factors like falls, freezing, shame, and comorbid neuropsychiatric and cognitive symptoms are warranted [for treating anxiety in patients].
Collectively, according to researchers, these findings highlight a need for further studies to develop support systems to help people with Parkinson’s manage their anxiety.
“Further trials of CBT protocols adapted for [Parkinson’s]-specific factors like falls, freezing, shame, and comorbid neuropsychiatric and cognitive symptoms are warranted,” the team wrote.
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