The Cost of Caring: Those Who Care for Loved Ones with Parkinson’s Lose Income Too


In a study published in the journal Movement Disorders, researchers studied the economic impact of caring for someone with Parkinson’s disease (PD) in the first 5 years of diagnosis. Previous studies have shown that caregivers of people with PD have lower scores on quality-of-life measures. This study is the first to examine the economic burden of caregiving specifically and found that caregivers (n = 1,211) had significantly higher direct, prescription, and out-of-pocket healthcare expenses (P < .01) compared with age-matched control subjects (n = 6,055). Analysis of subgroups for whom the data was available also showed that indirect costs (418 caregivers and 2,090 controls; P < .05) in the first 3 years after diagnosis were higher. Of note, lost income among caregivers was more than twice as high as for noncaregivers (378 caregivers and 1,890 controls; P = .03).  

The data for this study came from a deidentified private-insurer claims database. Persons with least 2 records documenting a diagnosis of PD who were not the primary policyholders were identified, and the person who was the primary policyholders for them was identified as the caregiver. Caregivers were then matched 1:5 with policyholders without a dependent with a diagnosis of PD for direct cost analysis. Indirect cost and income progression analysis were done on smaller subsets for whom that data was available. The mean age of all participants was 55.7 and data came from 1998 through 2014. 


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