Parkinson Disease: A Heavy Price Beyond the Patient

January 15, 2019

On top of an extraordinary economic burden, caregivers of patients with Parkinson disease have higher rates of several general caregiving comorbidities, including backache, hypertension, and gastrointestinal symptoms.


A new study has found that income loss in caregivers of people with Parkinson disease (PD) may be about two times higher than in similar caregivers whose dependents do not have PD. PD caregivers may also incur higher health care costs. Results were published online on Dec 27, 2018 in Movement Disorders.1

The study is the first to quantify medical costs and wages lost over time for working age caregivers of those with PD.

“The high prevalence of PD in the United States further underscores the magnitude of the burden of this disease. Although there are no estimates on the number of caregivers for patients with PD in the United States, the total number of patients with PD (currently estimated to be between 700,000 and 900,000 Americans) presents a likely scenario that many thousands of caregivers may be impacted by the present findings,” wrote first author Pablo Martinez-Martin, MD, PHD, of the Carlos III Institute of Health (Madrid, Spain), and colleagues.

Beyond motor symptoms, individuals with PD often suffer from other conditions that can take their toll on caregivers. These include cognitive decline, depression, apathy, anxiety, hallucinations, and impulse control disorders. The long duration of the disease can further contribute to caregiver burden. But how does this impact caregiver health and finances over time?

To answer this question, researchers analyzed data from the OptumHealth Care Solutions, Inc. database, which contains data on private insurance claims for over 18 million people in the US.

The study included 1211 working age (18 to 64 years) policyholders with a dependent diagnosed with PD between January 1998 and March 2014. Researchers linked these people with 6055 policyholders with a dependent who did not have PD. Then they estimated and compared direct costs (all-cause medical, prescription drug, comorbidity-related medical costs, and direct out-of-pocket costs), indirect costs related to work absenteeism and disability, and changes in wages over five years. Results were adjusted for age, sex, region, health plan, comorbidities, and year of PD diagnosis.

Results showed that PD caregivers had significantly higher direct costs than controls in year one. These costs were similar for years two through five, with the exception of prescription drug costs and out-of-pocket costs which were higher in PD caregivers for all five years. During the first three years, PD caregivers had higher indirect costs than controls, but these costs were similar in years four and five (Table).

Most notably, PD caregivers had an annual rate of income loss that was about twice as high as controls: about $1200 vs $520 annually or $5967 vs $2634 over all five years (P for interaction = 0.03).

The authors noted that PD caregivers had higher rates of several general caregiving comorbidities at baseline, including backache, hypertension, GERD/heartburn, and IBS. Over the five years of the study, costs for these problems continued to be higher for PD caregivers than for controls, which suggests higher rates of chronic illness in PD caregivers.

“We speculate that such incremental comorbidity burden may be related to increased mental and physical stress; however, the causes and pathways of such physical burden need to be further explored,” they wrote.

They also mentioned that PD caregiving costs may increase as the disease progresses. However, the study could not evaluate burden beyond five years after diagnosis. Further research is needed to look at the longer-term economic and health burden in PD caregivers.

The study had several limitations. It had a high loss to followup rate, ranging from 73% to 90% by year 5, so results may have underestimated the burden to PD caregivers over time. Also, researchers assumed that the policyholder was the primary caregiver. If someone else cared for the individual with PD, results may also have underestimated caregiver burden.

Take Home Points

• Administrative claims data suggest income loss during the first five years after diagnosis is about twice as high in PD caregivers vs controls

• Prescription drug and total out-of-pocket costs are significantly higher during the first five years after diagnosis in PD caregivers vs controls

• Costs related to absenteeism and disability are higher in the first three years after diagnosis in PD caregivers vs controls

• Longer term studies needed to quantify the financial burden of PD on caregivers during the full course of disease



1. Martinez-Martin P, Macaulay D, Jalundhwala YJ, et al. The long-term direct and indirect economic burden among Parkinson's disease caregivers in the United States. Mov Disord. 2018 Dec 27. [Epub ahead of print].