Study shows extent of aggression towards caregivers in Parkinson's disease

Study shows extent of aggression towards caregivers in Parkinson's disease

Caregivers who are already struggling with the stress of caring for a loved one diagnosed with Parkinson's disease often have another problem to contend with -; Aggressive behavior of the Parkinson's patient directed towards them.

A new study led by Zachary Macchi, MD, assistant professor of neurology at the University of Colorado School of Medicine, shows the extent of the problem and some of the factors that lead to aggressive behavior.

Macchi's recent work on a clinical trial of outpatient palliative care for patients and caregivers with Parkinson's disease and related disorders helped initiate this study.

When we spoke to nurses, we found that they reported a fairly high prevalence of aggression towards them on behalf of patients. This is something that really hasn't been studied in Parkinson's disease and similar disorders. That gave us a lot to think about and an invitation to explore this further.”

Zachary Macchi, MD, assistant professor of neurology, University of Colorado School of Medicine

A mixed methods study

Macchi developed a study that used a combination of quantitative data from the Palliative Care Clinical Trial and qualitative data from interviews with study participants. After reviewing the data from the clinical trial, he went back to talk to caregivers who reported any type of aggression as part of their caregiving experience.

“We conducted interviews with these caregivers and had them share their experiences, and we were able to begin to understand the triggers or what we call precursors to aggression,” Macchi says. “The things that led to the aggression, as well as the behavior itself.”

The qualitative research identified aggressive behaviors ranging from verbal abuse to threats of physical violence, largely due to patients' difficulties coping with disease progression and associated losses. These triggers were also evident in the quantitative data, which showed that factors contributing to aggression included grief, loss of motor symptoms, confusion, change in functional status, and even the cognitive fluctuations that characterize Parkinson's disease.

"When we went into this research, we hypothesized about the other factors that might contribute to patients exhibiting aggressive behavior - things like cognitive impairments or certain types of medications that were used - and interestingly, the things we expected: patients with dementia, male gender, age, longer duration of illness, these variables were not associated with aggression," adds Macchi added. "It's interesting to see some of the things play out that we didn't expect to be associated with these types of behavioral problems."

Creating an intervention to help

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Additionally, Macchi's study found that caregiver stress and mental health are worsened by aggressive behavior, that aggressive behavior negatively impacts the patient-caregiver relationship, and that caregivers are ill-prepared to manage aggressive behavior and deal with its consequences themselves. He is now beginning work on developing an intervention to help caregivers recognize and manage aggressive behavior.

“The next step would be to build what we call a psychoeducational intervention, where we work with caregivers to identify these behaviors and then identify triggers — or potential precursors to those behaviors, and then understand the consequences of that,” Macchi says. “We want to give nurses the tools and skills to manage these and promote an ongoing nurse-clinician relationship.”

Because aggressive behavior in Parkinson's is an underappreciated problem, Macchi says, it is important to understand how clinicians are currently engaging with caregivers on this issue and to work directly with caregivers to develop an intervention that best captures their concerns and provides help they would find it useful.

Growing awareness

Macchi is currently developing a nationwide survey asking neurologists about this topic, particularly the state of current practice in dealing with aggression. He plans to further advance this work through funding from the National Institutes of Health to support ongoing work developing the intervention.

“This is an issue that we think is vastly under-recognized, and I hope to bring more awareness to it, even among clinicians who work directly with people living with Parkinson's disease,” he says. "Just knowing that this is a factor that is likely driving caregiver burden for some people and can be picked up at outpatient appointments, I want them to realize that these behavioral issues are worth looking for. I hope that people take that away from this study."

Source:

University of Colorado Anschutz Medical Campus

Reference:

Macchi, Z.A., et al. (2022) Aggression toward caregivers in Parkinson's disease and related disorders: A mixed methods study. Movement disorders. doi.org/10.1002/mdc3.13555.

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