Patients With Parkinson Disease Might Benefit From Social Participation Education, Resources
Data from an interventional survey suggest that patients with a better understanding of social participation’s benefits may be more confident to participate in social situations and events.
Ling Wan-Albert, OTD, MS
The results of a small interventional survey suggest that among individuals with Parkinson disease (PD), there is a clear need for education on the importance of social participation in this population.1 The intervention—including an educational pamphlet with practical methods in social participation and a discussion on the importance social participation for cognition with a researcher—resulted in overall improvements for patients, with them reporting increased confidence in social participation and improved knowledge of related resources.
All told, there were 10 categories of potential improvement assessed among the 4 individuals (2 men, 2 women; 2 patients, 2 care partners) recruited from the New York Institute of Technology Academic Health Care Center and Wellness Program, with overall improvement reported in 8 of those 10. The assessment was done with a Likert scale rating of 1 to 5 points. 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.
After the intervention, patients reported a decrease by a mean of 0.25 points and 1.4 points, respectively, regarding difficulty eating with utensils and the avoidance of eating at restaurants. Additionally, they reported their level of being informed about the effects of social participation increasing by 1 point; their knowledge of ways to increase interactions increasing by 0.75 points; and their knowledge of resources available increasing by 0.5 points. Individual confidence in increasing social participation, creativity in increasing social participation, and how often they looked forward to social engagement increased by a mean of 1 point, 0.25 points, and 0.25 points, respectively. There was no change reported in social performance confidence and confidence using virtual platforms.
“PD is neurodegenerative disease that causes both motor and nonmotor symptoms. There is little focus on the impacts of cognitive impairments related to PD [and] motor impairments can lead to decreased participation which may cause further cognitive decline,” investigator Ling Wan-Albert, OTD, MS, an assistant professor of occupational therapy at New York Institute of Technology, and colleagues wrote. “We hope that this study may serve as a starting point for future research in this area. We aim spread awareness of the importance of increasing social participation in [people with PD], thereby decreasing cognitive decline in the PD population.”
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Wan-Albert and colleagues noted that the educational pamphlets along with interaction and follow-up phone calls could be promising tools for increasing awareness about social participation in PD. But the group admitted that further research is needed to explore intervention options in PD to address social participation and cognition.
Wan-Albert told NeurologyLive® that it is vital for the clinical community to educate patients on the importance of maintaining social participation as long as possible to mitigate the negative effects of isolation, particularly as it pertains to their cognition. “Patients usually come to the neurologist and complain about their motor aspects, the challenge in walking, balance, freezing, and all those very visible conditions, but they may not mention—or more importantly, they are not even aware of—the change in terms of cognitive function,” she said.
“Because of all those motor aspects that might be happening, patients have a tendency to avoid going out to social events unless they feel they have to, or they feel they are obligated to attend certain events. They also tend to avoid any social eating. They used to go out with friends, meet in a restaurant, and have a good time. Now, they deem it not necessary. They say, ‘I'm going to skip this one,’ right? Over time, over a couple more years, they are going to skip more and more social participation opportunities and then become more isolated.”
The limitations of the study included the small number of participants—which the investigators noted could have possibly been because to the time commitment that was required—and that the study was conducted using a survey. Wan-Albert et al noted that an open-ended interview might provide further clarity about the specific difficulties that each participant faced, allowing for a more focused discussion.
The amount of available literature on the effect of social isolation on patients with PD has increased in recent years, particularly as the COVID-19 pandemic played a role in increasing the occurrence of isolation. In fact, at the 2022 ATMRD Congress, the results of a PMD Alliance survey suggested that the COVID-19 pandemic resulted in a decline in social support for patients with PD, and that this decline, in turn, was negatively associated with a statistically significant burden of nonmotor symptoms of PD, such as those of mood and neuropsychiatric origin.2
That study, conducted by Neal Hermanowicz, MD, a neurologist at Christus St. Vincent Health System, and colleagues, included 718 individuals, of whom 507 were patients with PD and the remaining 211 were care partners who responded on their patient’s behalf. All told, 58.5% (n = 420) of the overall cohort reported decreased social support from outside of their household during the pandemic. Of the remaining individuals, 31.1% (n = 223) reported the same amount of social support, while 10.5% (n = 75) reported an increase.
“Theoretically, it makes a lot of sense that if you don't see people, and you isolate yourself, it may cause early cognitive decline. Especially in the social aspects—a couple of studies that we found discussed about specifically the executive function in problem solving in social situations,” Wan-Albert said. “There is lots of going on because of the motor aspects affecting their social aspects in their life, in general, and we want to do whatever we can to minimize that happening.”
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