Background

Care partners support people with Parkinson's disease through a long journey ranging from independence to dependence for many daily tasks. Longitudinal studies are important to understand the evolution of this process and predictors of future needs of care partners.

Methods

A scoping review was conducted, searching PubMed for longitudinal studies examining care partner burden, needs or coping in Parkinson's disease published through May 2020.

Results

Eight observational studies and 19 interventional studies met the eligibility criteria. Longitudinal observation ranged from 7 weeks to 10 years, involving between six and 8515 care partners. All studies addressed care partner burden, while two and three studies respectively addressed needs and coping. Only one study related burden to specific stages or duration of disease. Results from identified studies show that care partners in Parkinson's disease are at risk for increasing burden over time. Multiple predictors of future burden have been identified related to the person with Parkinson's disease, the care partner, or an intervention. No studies examined the evolution of needs and coping in caregiving in Parkinson's disease.

Conclusion

The scarcity of longer term, observational research on the temporal evolution of burden and particularly needs and coping in caregiving for someone with PD is a main identified gap. Even within these observational studies, the impact of caregiving is not often reported. Longitudinal studies on these topics are needed to help understand their change over time and relation to each other, which can inform support planning for care partners.

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.