Study Looks at Longitudinal Changes in Caregivers of Patients With PD

While the burden on caregivers of family members with neurodegenerative diseases such as Parkinson disease (PD) is well known, data on longitudinal trajectories of this burden are limited; this study followed caregivers for 2 years.

A recent study examined the change in burden, strain, mood, and quality of life (QOL) in a group of caregivers of patients with Parkinson disease (PD) and also aimed to pinpoint predictors of these changes.

While the burden on caregivers of family members with neurodegenerative diseases such as PD is well known, data on longitudinal trajectories of this burden are limited, and so in the present study the investigators followed caregivers for 2 years.

Patients and their caregivers were recruited from 35 centers in Spain from the COPPADIS cohort, a multicenter, observational, longitudinal-prospective, 5-year follow-up study looking at disease progression. They were recruited from January 2016 to November 2017 and were evaluated again at a 2-year follow-up.

Of the 192 patients, most (63%) were male, with a mean age of 63.96 (8.74); most of the 192 caregivers were female (69.3%), with a mean age of 58.82 (11.71).

Assessments were conducted on both patients and their caregivers. Caregivers completed the following assessments:

  • The Zarit Caregiver Burden Inventory (ZCBI), which contains 22 items that rate the impact of PD on the caregiver ́s physical, emotional, and socioeconomic status
  • The Caregiver Strain Index (CSI), which is a 13-item questionnaire designed to assess level of stress experienced by caregivers
  • The Beck Depression Inventory-II (BDI-II), which is a self-administered, 21-item questionnaire to assess the severity of depression symptoms
  • The EUROHIS-QOL 8-item index (EUROHIS-QOL8), an 8-item QoL questionnaire (QoL, health status, energy, autonomy in activities of daily living [ADL], self-esteem, social relationships, economic capacity, and habitat)

Patients also completed a variety of assessments, including the BDI-II. For all instruments except the EUROHIS-QOL, higher scores indicate worse functioning.

At baseline, mild to severe burden was seen in 76% of the caregivers with major depression vs in 15% of caregivers without major depression (P <.0001). High level of stress was seen in 24% of the caregivers with major depression vs in 1.8% of those without major depression (P <.0001).

Mood impairment as assessed on the BDI-II (β = 0.652; P <.0001) in patients from baseline to follow-up 2 years later was the strongest factor linked with mood impairment in the caregiver. An increase in neuropsychiatric symptoms in the patient was also linked with worse mood in the caregiver.

Negative impacts were seen in the total score of the ZCBI (P <.0001), CSI (P <.0001), BDI-II (P = .024), and EUROHIS-QOL8 (P = .002)

From baseline to follow-up at 2 years, caregivers' mood impairment was the strongest factor linked with worsening scores of the ZCBI (β = 0.416; P <.0001), CSI (β = 0.277; P = .001), and EUROHIS-QOL (β=0.397; P = .002).

The results indicate that depressive symptoms should be detected in caregivers as well as patients, the authors said.

The study had some limitations, the authors noted. Due to inclusion and exclusion criteria, the group of patients was not fully representative of those with PD. Also, the group of caregivers may have been skewed to those having less burden because the patient sample veered towards those in the early stages of PD, and because some patients and caregivers withdrew before the 2-year follow-up visit. In addition, some variables were missing and information about caregiver treatment was not collected.

“Early recognition of caregiver burden and targeted interventions could be effective at reducing caregiver burden but well-designed prospective studies are needed,” the authors concluded.

Reference

Santos-García D, de Deus Fonticoba T, Cores Bartolomé C, et al. Predictors of the change in burden, strain, mood, and quality of life among caregivers of Parkinson's disease patients. Int J Geriatr Psychiatry. Published online May 17, 2022. doi: 10.1002/gps.5761