Objective: To describe and assess factors associated with informal caregiver quality of life (QoL) in late stage Parkinson’s disease (PD).

Background: In the late stage of PD, both motor and non-motor symptoms (NMS) are pronounced and patients become increasingly dependent on help in their daily life, resulting in an increased burden for the informal caregivers.

Method: The present cohort constitutes the Swedish part of the European multicenter project Care of Late Stage Parkinsonism (CLaSP) and the current analyses were specific for the Swedish substudy. Late stage PD was defined as Hoehn and Yahr stages IV-V in the “on” state and/or having a substantial need of help with activities of daily living (ADL); ≤ 50% on the Schwab and England Scale. Informal caregiver QoL was assessed in 74 informal caregivers of 107 patients in late stage PD, by the APPLIQue. The majority of the caregivers were the spouse/partner.

Results: The median (q1–q3) UPDRS III score was 40 (29–53); NMSS score was 91 (55–128); GDS-30 score was 11 (8-16); MMSE score was 22 (18–27) and 60 (58%) participants scored below the screening cutoff for cognitive impairment of ≤ 23 points. Individual APPLIQue items provided information on which aspects of caregiver burden were rated as the most common, i.e., items “feel guilty if not there” (71% affirmed), “situation wears me down” (65% affirmed) and “always on my mind” (61% affirmed). Simple linear regression analyses identified female patient gender (p = 0.007), better patient cognition (p = 0.004), lower NMS burden (p = 0.012) and not being the partner of the patient (p = 0.022) as associated with better caregiver QoL. In multivariable linear regression analyses, better patient cognition (p = 0.004) and female patient gender (p = 0.035) were identified as independently associated with better informal caregiver QoL.

Conclusion: The present data showed that there is a great burden on the informal caregivers of patients in late stage PD, resulting in decreased QoL, increasingly so when the patient is cognitively affected, has a high NMS burden and the caregiver is female. Spousal caregivers are most affected. Identifying and treating NMS as well as recognizing and alleviating caregiver burden seem essential to enhance QoL for both patients and caregivers.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/caregiver-burden-and-quality-of-life-in-late-stage-parkinsons-disease/