Greater Burden of Care Identified in Caregivers of Patients With Advanced Parkinson Disease


Caregivers of patients with advancing PD were more likely to spend more hours caring per day and had a higher self-perceived burden, compared with caregivers for patients with early PD.

Pablo Martinez-Martin, MD, PhD, neurologist and scientific researcher at the Carlos III Institute of Health, Madrid, Spain

Pablo Martinez-Martin, MD, PhD

In a recent international real-world study, findings showed that caregivers of patients with advanced Parkinson disease (APD) experience a greater burden than caregivers for patients with early Parkinson disease (PD).1 These results emphasized the importance of including caregiver-centric measures in future investigations and highlighted the need for implementing treatments that lower caregiver burden in APD.

All told, caregivers of people with intermediate PD had significantly higher self-perceived burden in comparison with caregivers for patients early PD (Zarit Burden interview [ZBI] = 29.5 vs 24.7; P <.001). Notably, caregivers of patients with APD had significantly higher self-perceived burden (ZBI = 34.5) compared with caregivers for patients with intermediate PD (P = .005) or early PD (P <.001).

Additionally, the proportion of patients with moderate caregiver burden increased significantly with severity of PD (16.7%, 23.9%, and 36.0%, respectively; Sidak adjusted P = 0.001 for early vs intermediate PD; P = 0.007 for intermediate vs APD; and P <.001 for early vs APD). Similarly, the proportion of caregivers experiencing severe burden increased with PD severity, as demonstrated by rates of 2.0% for early PD (early vs intermediate PD, P = .006), 5.1% for intermediate PD (intermediate vs APD, P = .045), and 6.4% for APD (Early vs APD, P = .002).

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Lead author Pablo Martinez-Martin, MD, PhD, neurologist and scientific researcher at the Carlos III Institute of Health, Madrid, Spain and colleagues wrote, “A failure to intervene to support families caring for an individual with APD is likely to result in a greater healthcare burden, as the caregivers themselves become ill, unable to offer support, and require care of their own. The development of strategies to reduce the burden of caregivers of people with PD are thus urgently required.”1

Between 2017 and 2019, 721 patient-caregiver dyads were from identified through the Adelphi Parkinson’s Disease Specific Program in United States, Japan and 5 other European countries. Patients and caregivers were asked to fill out a questionnaire, with caregivers reporting on their own demographic characteristics and perceived burden of care.2,3 Caregivers had an average age of 62.6 years, 71.6% were women, and 70.4% of caregivers were a spouse whereas patients with PD had a mean age of 70.7 years, and 61.9% of patients were male. One hundred and twenty-seven patients (17.6%) had a diagnosis of APD, with 258 (35.8%) and 336 (46.6%) patients were diagnosed with early and intermediate disease.

A lower percentage of caregivers for patients with intermediate PD were currently employed compared with caregivers for patients with early PD (25.3% vs 42.4%; P <.001). The number of hours per day spent caring for the patients with PD was significantly greater in caregivers of patients with intermediate PD (6.6 [±6.2] h/day) compared with caregivers for patients with early PD (3.2 [±4.7] h/day; P = .001).

“Given the number of different approaches currently in the treatment pipeline, there may be grounds for cautious optimism that more effective treatments will start to become available in the near future,” Martinez-Martin and colleagues noted.1

Limitations of the study included the lack of restrictions and control over the data for reducing bias and confounding factors as there was no randomization incorporated. As caregiver data was self-reported, the risk of missing or misclassified data is a potential deficiency of the study. In addition, geographic distribution of participants was imbalanced as care setting was not identified in the United States and Japan. Avoidance of care, and risk of bias for recent experience of care and actively involved in care for the patient was unaccounted for in the study with the caregivers.

“Data should be collected on the value of educational programs for caregivers of people with PD, in helping them understand the nature of the disease and its progressive nature,” Martinez-Martin et al noted.1 “In addition, it would be useful to evaluate the potential role of online technology in supporting the caregivers of people with APD, to assess whether this approach can provide meaningful access to healthcare for caregivers unable to travel or leave their family member unattended.”

1. Martinez-Martin P, Skorvanek M, Henriksen T, et al. Impact of advanced Parkinson's disease on caregivers: an international real-world study. J Neurol. 2023;1-12. doi:10.1007/s00415-022-11546-5
2. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649-655. doi:10.1093/geront/20.6.649
3. Hébert R, Bravo G, Préville M. Reliability, validity and reference values of the Zarit Burden interview for assessing informal caregivers of community-dwelling older persons with dementia. Can J Aging La Rev Can Vieilliss 19(4):494–507. doi: 10.1017/S0714980800012484
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