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Abstract

Introduction: People with Parkinson�s Disease (PD) experience a range of Cognitive and Neuropsychiatric Symptoms (CNPS), including depression, fatigue, anxiety, hallucinations and dementia. Patients rate CNPS as among the most important and challenging features of their illness (Politis et al., 2010), yet CNPS is less well understood than motor symptoms. Many loved ones of individuals with PD become informal caregivers. This study investigated the impact of CNPS on carers� and patients� wellbeing as individuals and on couples� relationship satisfaction. Method: This cross-sectional study involved 31 couples living with PD. Clinically valid screening tools and a semi-structured interview assessed the intensity of CNPS and CNPS-related distress. Self-report measures assessed mood, overall distress, health-related quality of life (HRQoL), and relationship satisfaction. Results: Within couples, patients and carers agreed on the levels of total CNPS intensity across the 14 CNPS assessed. Patients and carers within couples disagreed with their views of the presence of specific symptoms, particularly hallucinations, disinhibition, irritability, agitation and aggression, apathy and delusions. Discordance was not associated with distress or relationship satisfaction. Patient overall distress was positively predicted by couples� ratings of patient CNPS-related distress. Carer overall distress was positively predicted by carers� CNPS-related distress, caregiving-related distress and HRQoL. Carer relationship satisfaction was best predicted by caregiving-related distress. No predictors of patient relationship satisfaction were identified. Discussion: The study demonstrates that relying only patient or carer reports is clinically invalid. Patients� and carers� distress, experiences of PD-related CNPS, and any discordance within couples must be proactively an accurately assessed and used to inform interventions.

Biography

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