The experience of care partners of patients with Parkinson’s disease psychosis

Abstract

Background Parkinson’s disease psychosis (PDP) has a major impact on quality of life and care partner burden; however, little is known about the lived experiences of care partners in managing PDP. Objective To understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis. Methods This was a qualitative study of semi-structured telephone interviews. Recruitment was conducted online via the clinical study matching tool, Fox Trial Finder; study activities took place remotely via telephone interviews. Transcripts of the phone interviews were analyzed by grounded theory methods, and a codebook of key themes that emerged from the analysis was developed. Results Nine care partners (all female) were interviewed. Discussion topics in the codebook included (1) care partner burden and guilt; (2) communication with medical professionals; (3) coping strategies; (4) emotional reactions of the care partner to psychosis; (5) sources of knowledge about PD psychosis; (6) attitudes towards medications for PDP; (7) strategies to care for loved ones with psychosis; (8) psychosis triggers. Conclusions This qualitative analysis uncovers important aspects of the care partner experience, including challenges in navigating the medical system and communicating with professionals. Providers treating patients with PDP should be aware of these constraints and provide added support for strained care partners.

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

“…A study of the caregiving experience for someone with PD psychosis found that coping could be improved if carers had assistance to process feelings associated with their loved ones' PD psychosis. A recent study found that care partners of PWP and psychosis often discussed burden and guilt, triggers to psychosis and strategies to care for loved ones with psychosis [28]. Three participants in this study experienced jealous delusions.…”

“…Three participants in this study experienced jealous delusions. Challenging emotions and consequences included anger, lowered mood, stress, loss of social networks and diminished self-esteem [28]. Other work documented the mental health and relational problems for carers of psychotic persons, not specifically PD [29].…”

Impact of Isolation During the COVID-19 Pandemic on the Patient Burden of Parkinson’s Disease: A PMD Alliance Survey

“…Progression of non-motor symptoms of PD does not necessarily follow motor deterioration 24 and, given the burden non-motor symptoms pose on PwP 8 , 9 and caregivers, 10 , 11 increased attention towards prompt recognition and treatment of non-motor symptoms during the COVID-19 pandemic is warranted. PwP were generally less likely than CP proxies to report increased PD symptoms, but the difference was particularly prominent for non-motor symptoms.…”

“…Non-motor symptoms of PD profoundly add to caregiver burden, adversely affect caregivers’ mental health, 10 , 11 , 30 , 31 and are associated with a reduced CP satisfaction from their relationship with the PwP. 32 The increase in delusions and hallucinations reported by PwP in this survey are particularly worrisome, since, in addition to frequent hospitalizations and falls, 33 it is these symptoms that have been found to be the main reason for placement in a long-term care facility.…”

“… 7 Non-motor symptoms are associated with reduced QoL in PwP 8 , 9 and contribute substantially to caregiver burden. 10 , 11 PD symptoms can also adversely impact social functioning of PwP; 12 however, perceived physical health in PwP has been reported to correlate with time spent on outdoor leisure activities. 13 Moreover, loneliness has been linked to several conditions affecting mental and physical health.…”