ABSTRACT
Background: Since the onset of the coronavirus disease 2019 pandemic, the caregiving routine for care partners of people with Parkinson's disease (PwPD) changed substantially. Objectives: To understand the nature and severity of burden in care partners of PwPD during the ongoing pandemic. We also sought to describe care partners' perceived change in burden and factors associated with increased burden. Methods: Cross-sectional online questionnaire-based study among care partners of PwPD, registered in the Fox Insight study. The questionnaire consisted of the Modified Caregiver Strain Index, whether an aspect of strain had changed over the course of the pandemic and additional pandemic-specific infection and lifestyle-related items. Results: Two hundred seventy-three non-paid primary care partners responded to the questionnaire, 73% female with a median age at enrollment of 64 years, 56% reporting a household income greater than 75,000 USD per year, and 61% retired. An increase in burden compared to before the pandemic was prevalent, ranging from 33% to 63% for individual items. Emotional strain increased most frequently (63%). Decreases in burden were uncommon; work adjustments (7%) and time demands (6%) decreased most frequently. PD-related factors and care partner roles in personal care of the PwPD were the factors that were associated with strain in multivariable analysis, whereas social and pandemic-related factors were not. Conclusion: In this affluent and mostly retired cohort, increases in emotional strain during the pandemic were prevalent. Despite this, caregiving roles in personal care and severity of symptoms in the PwPD were more strongly associated with strain than social and pandemic-related factors.
ABSTRACT
BACKGROUND: There is growing interest in identifying individuals who are in the prodromal phase of Parkinson's disease (PD), as these individuals are potentially suitable for inclusion in intervention trials to prevent clinically manifest PD. However, it is less clear whether-and to what extent-cognitive deficits are present in prodromal PD. METHODS: A systematic query was conducted through PubMed and Embase for prospective observational cohort studies that (a) assessed cognitive performance in individuals free of manifest PD at baseline and (b) subsequently followed up participants for incident PD. We grouped the results by cognitive domain, and for domains that had been reported in at least three separate studies, we performed random-effects, inverse variance meta-analyses based on summary statistics. RESULTS: We identified nine articles suitable for inclusion, with a total of 215 patients with phenoconversion and 13,524 individuals remaining disease-free at follow-up. The studies were highly heterogeneous in study design, study population, and cognitive test batteries. Studies that included only cognitive screening measures such as MMSE or MoCA reported no association between worse cognitive performance and onset of manifest PD (combined odds ratio 1.08; 95% confidence interval 0.66-1.77). By contrast, studies that used extensive cognitive testing batteries found that global cognitive deficits were associated with an increased risk of manifest PD. In domain-specific analyses, there was evidence for an association between worse executive functioning (OR 1.45; 95% CI 1.10-1.92), but not memory (OR 1.20; 95% CI 0.85-1.70) or attention (OR 0.98; 95% CI 0.23-4.26), and clinically manifest PD. CONCLUSION: Although some caution due to high heterogeneity among published studies is warranted, the available evidence suggests that global and executive cognitive deficits are prodromal features of PD. Collaborative prospective studies with extensive cognitive test batteries are required to shed light on domain-specific deficits, temporal relations, and subgroup differences in prodromal cognitive deficits in PD.
