Psychological Impact of Parkinson Disease Delusions on Spouse Caregivers: A Qualitative Study

Abstract

There is growing research on carers of people with Parkinson’s disease (PD) experiences. However, the impact on carers by PD delusions is not specifically examined. We conducted a qualitative study using semi-structured interviews of spouse carers of PD patients with delusions. Thematic analysis was employed using MAXQDA 2018. Twelve spouse participants (SPs) were interviewed. Four themes emerged: Managing incredulity: trying to make sense of delusion content; Hypervigilance: constant alertness to bizarre and threatening discourse and behavior; Defensive strategizing: anticipating delusions and potential consequences; Concealing and exposing: ambivalence about disclosing the effect of delusions yet wanting support. SPs reported effects on their emotional well-being and marital relationship and challenges to an orderly, predictable life. SPs were reluctant to share their experiences due to delusion content (often infidelity and sexual in nature) and a desire to protect their spouses’ image. SPs’ awareness of the potential for delusional thought was low prior to their occurrence. Conclusions: education surrounding potential neurobehavioral changes should occur for patients and carers. Clinicians should be aware that the impact of delusions on carers is often greater than disclosed in clinical interviews. Interdisciplinary teams speaking separately to spousal carers may improve disclosure and delivery of appropriate psychological support.

Caregiver Burden in Movement Disorders and Neurodegenerative Diseases: Editorial

“…In the study of Deutsch et al semi-structured interviews were used to increase the understanding of the impact of delusions of PD patients on caregiver burden [ 16 ]. The authors were able to identify four main themes emerging from the caregivers experiencing delusions of PD patients prior to the interviews.…”

Aggression Towards Caregivers in Parkinson's Disease and Related Disorders: A Mixed Methods Study

“…While previous studies have examined behavioral disturbances in PDRD and their impact on caregivers, 6,32,33 no known study has examined aggression towards caregivers by incorporating caregivers' perceptions on being the target of aggressive behaviors. The results of this study provide a comprehensive description of the caregiver experience and present informative data for addressing aggression in clinical practice.…”