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Title: Patient and spouse perceptions of cognitive and neuropsychiatric symptoms in Parkinson's Disease : implications for distress, quality of life and relationship satisfaction
Author: Janssen, Anna
Awarding Body: King's College London (University of London)
Current Institution: King's College London (University of London)
Date of Award: 2013
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Introduction: People with Parkinson’s Disease (PD) experience a range of cognitive and neuropsychiatric symptoms (CNPS), including depression, fatigue and anxiety, hallucinations and dementia. Although common, CNPS are less well understood than motor symptoms. CNPS are rated by patients as among the most important and challenging features of their illness (Politis et al., 2010) and are closely associated with health-related quality of life (Gallagher, Lees & Schrag, 2010). Many spouses or partners of a person with PD become informal caregivers. Despite an increasing awareness of the implications of PD for carers, there is a paucity of information about the impact of CNPS on carers and on the patient-carer relationship. This study sought to investigate the nature, extent and impact of CNPS on the wellbeing of carers and patients as individuals and on their relationship satisfaction as a couple. Method: The study was exploratory and cross sectional focussing on a single time-point in the lives of 31 couples living with PD. Data collection was quantitative and involved using clinically valid screening tools, a semi-structured interview to assess the presence and intensity of CNPS and CNPS-related distress and self-report measures to assess participants’ mood, HADS distress, health-related quality of life, and relationship satisfaction. Results: The study showed that anxiety and depression was low for the majority of patients and carers, and most participants were satisfied with their relationships. Although patients and carers had similar levels of HADS distress and relationship satisfaction, health-related quality of life was poorer for patients than carers. The majority of participants rated patient physical disability as mild or non-existent. The most frequently reported CNPS among patients was decline in memory and attention followed by anxiety and apathy. Among carers, the most frequently reported CNPS was anxiety followed by depression and decline in memory and attention. Within couples, patients and carers agreed on levels of total CNPS intensity across the 14 CNPS assessed. Patients and carers within couples disagreed, however, in their views of the presence of specific symptoms. The highest rates of discordance were found for hallucinations followed by disinhibition, with over two-thirds of couples disagreeing on the presence of these symptoms. At least half of couples disagreed about the presence of irritability, agitation and aggression, apathy and delusions. Discordance was not associated with HADS distress or relationship satisfaction for either group. Patient HADS distress was positively predicted by patients’ and carers’ ratings of patient CNPS-related distress. Carer HADS distress was positively predicted by carers’ CNPS-related distress, caregiving-related distress and health-related quality of life. Carer relationship satisfaction was best predicted by caregiving-related distress. No predictors of patient relationship satisfaction were identified. Discussion: This study’s contribution to current understanding of couples’ experiences of CNPS and its clinical implications are discussed. Findings highlight that relying on the patient or proxy only to report CNPS is clinically invalid. The study demonstrates the importance of accurate assessment of patients’ and carers’ perceptions of CNPS and exploring any differences in these. It emphasises the need to pay careful attention to patient and carer distress. Given its clinical relevance, such information about patients’ and carers’ experiences of PD-related CNPS must be actively sought and used when formulating and planning interventions.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (D.Clin.Psy.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available