Data from a PMD Alliance survey of more than 700 individuals with PD or their care partners showed significant associations between decreased social support and exasperation of nonmotor and cognitive symptoms of PD.
The results of a PMD Alliance survey presented in a poster at the 2022 Advanced Therapeutics in Movement and Related Disorders (ATMRD) Congress in Washington, DC, June 17-19, suggest that the COVID-19 pandemic resulted in a decline in social support for patients with Parkinson disease (PD). The data show 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.1
The effort, conducted by Neal Hermanowicz, MD, neurologist, 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.
This decrease in social support was considered significant by 17% of the surveyed population, and somewhat decreased by 19%, while 43% reported it was slightly decreased. Another 21% reported that this decrease in support was unchanged from prior to the pandemic. Among those who reported their social support being maintained, only 7% considered it significantly so, while 17% deemed it somewhat maintained and 28% considered it slightly maintained. The majority, or 48%, considered it to be unchanged from the rate of prepademic support.
Additionally, 70.7% (n = 358) of those with PD reported experiencing an increase in sadness and depression during the pandemic, while 69.9% (n = 147) of care partners relayed their patient feeling the same way, for a total of 69.6% of the surveyed population. Similarly, an increase in anxiety was reported by 65.5% of the cohort (63.1% of patients with PD and 71.3% of care partners.
“These results call for increased vigilance towards nonmotor symptoms in [people with PD] experiencing social isolation and for stronger provider focus on encouraging [people with PD] and their [care partners] to build and maintain social connections and engagements,” Hermanowicz and colleagues wrote. They continued by pointing out that decreased social support from outside the household or primary relationship was significantly associated with the increases in sadness, depression, and anxiety when compared with those who maintained levels of social support (P <.0001).
These are not the only data to suggest that social isolation has impacted patients with PD. Work from Subramanian et al in 2020 showed similar findings, with data from another survey study of more than 1700 patients with idiopathic PD, suggesting that social isolation and loneliness may be risk factors for worsened disease severity.2
Subramanian, who is the director of the VA Southwest Parkinson’s Disease Research, Education and Clinical Centers, and a staff member in the Department of Neurology at UCLA, spoke to NeurologyLive® in September 2020 about how these findings provide perspective on the importance of patient-centric outcomes and measures—particularly in the case of Parkinson disease, which is anticipated to almost double in prevalence over the next few decades. She explained that they “ended up looking at the loneliness indicators, and saw that loneliness is actually a hugely bad prognostic indicator for these patients. It's as bad for you to be lonely with Parkinson's as the beneficial effects of exercising 7 days a week for 30 minutes a day is good for you. So, it's a really huge determinant of wellness in this population, and I think it's all the more important to care about this due to COVID-19.”
Similarly, Hermanowicz spoke with NeurologyLive® in April 2022 about the importance of social engagements for this patient population, stressing the benefits for not only the PD population, but for health in general. “Going to museums [and] engaging in cultural activities is good for us. It’s not just that we enjoy it, it’s actually good for our health. At some point, if you’ve lived to the age of 25, you’ve experienced a sense of home sickness or heartbreak, and these are realities. These are not just something in the air, these are things that affect our health and make us feel not so good. Changing those things can have a huge impact on the well-being of people,” he said.
Other nonmotor symptoms were also reported to be affected by the COVID-19 pandemic, with 63.1% of respondents reporting a decline in memory, problem solving, or communication skills. New or worsening confusion was reported by 39.4% of the cohort, while new or worsening hallucinations and delusions were reported by 19.4% and 16.2%, respectively.1
Most of these changes were also significantly associated with decreases in social support (memory, problem solving, or communication, P = .0009; confusion, P <.0001; delusions, P <.0001). Social support declines, however, were not found to be associated with the onset of new or worsening hallucinations (P = .1278).