Survey Suggests Gaps in Communication With Parkinson Disease Care Partners


A survey of more than 700 Parkinson disease caregivers highlighted the impact their role has on them emotionally, physically, and mentally, and pointed to several areas of need for support from the clinical community.

Michelle-Ann Charles, MBA, associate director of Public Affairs at Kyowa Kirin

Michelle-Ann Charles, MBA

The results of a survey of more than 750 individuals who serve as care partners to patients with Parkinson disease (PD) highlighted the depth of challenges that they experience in this role, and suggest that more effort is needed to provide these individuals with support in their role. Notably, though, more than two-thirds of these care partners reported that their experience strengthened their relationship with the patient with PD despite the difficulties in fulfilling their duties as a caregiver.

All told, there were 5 key challenges that were identified by the surveyed care partners, who were asked to select which they faced from a list of options. The most common was “Watching the patient's symptoms worsen,” reported by 73% of partners. This was followed by “Finding time to take care of themselves,” reported by 54% of partners; “Addressing their own fears and anxieties,” reported by 48% of partners; “Finding time to balance their personal or social life,” reported by 42% of partners; and “Feeling alone/not having enough support,” reported by 41% of partners. Additional options that were not included by a majority were “communication,” “disease understanding,” “financial barriers,” “new treatment/therapies,” and “access to resources.”

The data were presented at the 2nd Annual Advanced Therapeutics in Movement and Related Disorders (ATMRD) Congress, held by the PMD Alliance from June 8 to 11, 2023, in Washington, DC, as a poster by Michelle-Ann Charles, MBA, associate director of Public Affairs at Kyowa Kirin, and colleagues. The survey was conducted via online and computer-assisted telephone interviews with 752 individuals aged 18 years and older (22% men, 78% women), of which 97% were family members of the person with PD, and 82% were spouses or significant others. On average, the cohort had been caring for an individual with PD for 6.8 years, with nearly half (45%) beginning their role when the disease had progressed to a certain point (28% began at diagnosis, and 25% began prior to diagnosis).

“Outcomes from the survey provided insight into the multifaceted role care partners play in PD, the impact caregiving has on their own emotional and physical health, and the need for better communication between care partners and healthcare teams to support them along the Parkinson care partner journey,” Charles and colleagues wrote.

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One of the key findings from the survey was related to the care partner’s communication with the healthcare team. All told, 61% of the survey respondents noted that they spoke with the patient “very often” about the symptoms, but only 49% and 42% spoke with the symptoms “occasionally” or “very often” with the healthcare team, respectively. Calls with the healthcare team were initiated by the care provider on a quarterly and monthly basis at rates of 33% and 30%, respectively.

“Care partners participate in healthcare team meetings but are less proactive in discussing the patient’s symptoms; respondents report a need for more lay-person explanations when discussing symptoms and care management,” Charles et al wrote. The poster included a quote from one of the surveyed partners that pointed to this challenge, with the PD care partner saying that, “I am a healthcare advocate for my husband. But during appointments, I find it hard to understand the medical terms they use during explanation about Parkinson.” The main preferences of care partners for information and resources were the healthcare team and care partner support (49% each), online or in-person seminars (40%), and materials or resources from PD advocacy groups (34%).

Also among the findings was that the longer an individual had served as a care partner, the greater the affect it had on their own well-being. Overall, the cohort reported an average of 46.7 hours per week spent on their caregiving duties. When stratified into groups who had been in the role for 1 to 5 years and 6 to 10 years, the latter group reported a greater somewhat negative or negative impact on their emotional health (86% vs 76%), mental health (83% vs 70%), physical health (71% vs 50%), planning for the future (68% vs 64%), and hobbies and interests (68% vs 63%).

Care partners also noted that they often recognize new symptoms before the patient. Two questions on the topic were asked: 1. I often recognize new symptoms before the person I am care for does, and 2. The person I care for is not always aware when they are experiencing new symptoms. For the former, 88% of care partners either somewhat (53%) or completely agreed (36%), and for the latter, 85% either somewhat (53%) or completely agreed (32%). “Despite the key role that care partners play in patient care, their experience of PD is not well understood,” Charles and colleagues wrote.

Click here for more coverage of ATMRD 2023.

Charles MA, Thiele S, Islam I. A Deeper Look at Parkinson’s Caregiving: Insights From the 2022 Parkinson’s Care Partner Survey. Presented at: ATMRD; June 9-11, 2023; Washington, DC.
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