Aggression Aimed at Caregivers in Parkinson’s Linked to Patients’ Grief
Aggression aimed at caregivers in Parkinson’s disease and related disorders is associated with patients’ grief in coping with disease progression and related losses, a new study suggests.
Fluctuations in cognition also play a role, researchers say.
But these behavioral disturbances have serious consequences for caregivers, according to investigators, who suggest that neurologists and movement specialists consider screening for aggression by incorporating the caregivers’ perspectives. That will contribute to working with caregivers on strategies to cope with aggressive behavior by patients — “prioritizing caregiver education and wellbeing,” the researchers wrote.
“This is an issue that we think is very much underrecognized,” Zachary Macchi, MD, who led the study, said in a press release, adding that “this is a factor likely driving caregiver burden for some people.”
“I’m hoping to create more awareness toward it … among clinicians who work directly with people living with Parkinson’s disease,” said Macchi, an assistant professor of neurology at the University of Colorado School of Medicine.
Investigating aggressive behaviors among patients
Titled “Aggression towards caregivers in Parkinson’s disease and related disorders: A mixed methods study,” the study was published in the journal Movement Disorders.
Aggression in advanced stages of Parkinson’s disease and related disorders is common and relates to symptoms burden, according to researchers.
This includes verbal abuse, physical harm, or sexual advances. While previous studies have looked into behavioral disturbances and their impact on caregivers, the caregivers’ perceptions of being the target of aggressive behaviors were not considered.
Now, a team of U.S. researchers identified factors associated with aggressive behavior in Parkinson’s disease and other disorders. The study mixed quantitative data, obtained from a recent clinical trial, with a qualitative component of caregivers’ perceptions, based on interviews.
The initial clinical trial enrolled 592 participants — dyads or related pairs of 296 patients and 296 caregivers — who were recruited from outpatient neurology care in California, Colorado, and Wyoming. The researchers collected the quantitative data every three months for 12 months, between March 2017 and December 2020.
At the beginning of the study, half of the patients (50.3%) had dementia, and two-thirds had idiopathic Parkinson’s (66.6%). Idiopathic means the disease is of unknown origin. The average disease duration was nine years, with an average duration of caregiving of five years.
The majority of the caregivers were women (76.6%) who were highly educated — 50% had a college education. More than three-quarters (76.9%) were married to the patient and an even greater number (82.4%) lived in the same house.
Some type of aggression was reported by 22.3% of caregivers. This included physical aggression, experienced by 17.6%, and sexual aggressions, reported by 8.8%.
This is an issue that we think is very much underrecognized
At the study’s start (baseline), patients’ aggressive behaviors were correlated with lower annual income, longer disease duration, worse severity of motor symptoms, and reduced functional status. Grief and poorer quality of life also was associated with aggression.
A higher resistance to care correlated with physical aggression alone or with either type of aggression combined. Meanwhile, a higher severity of motor symptoms was associated with physical aggression alone.
An increase in aggressive behaviors also was associated with overall symptom burden, including motor and non-motor symptoms. Among the non-motor symptoms were nausea, depression, anxiety, confusion, and hallucinations.
Paranoia was related to sexual aggression alone.
When considering caregiver variables, greater baseline aggression correlated with depression, the overall burden for the caregiver, and the patient’s quality of life as perceived by the caregiver. Notably, caregiver anxiety was only associated with sexual aggression.
Assessing the impact on caregivers
Following the collection of quantitative data, semi-structured interviews were conducted over 4 months, with 14 of the caregivers who reported aggression. These participants were predominantly spouses (nine caregivers) and shared a residence with the patients (12 caregivers).
“We did interviews with these caregivers, letting them share their experiences, and we were able to begin to understand the triggers, or what we call predecessors to aggression,” Macchi said. He noted these predecessors were “the things that were leading up to aggression, as well as the behaviors themselves.”
In the interviews, five themes were identified that exemplified aggressive behaviors and their effect on caregivers. These included:
- behaviors ranging from verbal abuse to threats of physical aggression.
- caregivers’ beliefs that aggression was the result of patients’ difficulties in coping with disease progression and the loss of abilities.
- a belief that aggressive behaviors worsen caregiver stress and mental health, and negatively impact the patient-caregiver relationship.
- caregivers’ feelings that they were ill-prepared to cope with aggressive behaviors.
According to the researchers, several points converged between the identified themes and correlated variables. Grief is a contributor to aggression, mainly related to the patient’s frustration with functional decline, the team concluded.
“Our study is the first to show a relationship between patients’ grief and behavioral disturbances in [Parkinson’s disease and related disorders],” the researchers wrote.
Grief counseling, they suggested, “is one possible strategy for preemptively mitigating interpersonal issues contributing to escalating behavioral disturbances.”
Also, cognitive fluctuations, associated with episodic confusion, were shown to contribute to aggression, independently of dementia or global cognitive impairment. According to the researchers, “education of caregivers and medications for cognition … or mood disturbances … may help.”
Aggression toward caregivers contributes to the overall burden for carers, with a negative impact on their physical and mental health, the study found.
During routine care, screening for aggressive behaviors allows patients and caregivers to access resources to “facilitate early intervention, provide guidance and education to families or loved ones” or “mobilization of protective services when caregivers’ safety is threatened,” the researchers concluded.
“The next step would be to build what we call a psychoeducation intervention, where we work with caregivers on identifying these behaviors, and then identifying triggers — or potential precursors to these behaviors, and then understanding the consequences of them,” Macchi said.
“We want to give caregiver the tools and skillset to be able to manage those, and to foster an ongoing relationship between the caregiver and the clinician,” he said.
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