The experiences of carers looking after people with Parkinson’s disease who exhibit impulsive and compulsive behaviours: An exploratory qualitative study

Abstract

Aim: To understand the experiences of carers who were confronted by the development of impulsive and compulsive behaviours. Background: Impulsive and compulsive behaviours (ICBs) are a serious complication in Parkinson's disease (PD) strongly associated with dopamine replacement therapy used to treat patients. These behaviours comprise abnormal activities such as pathological gambling, binge eating, compulsive shopping and hypersexuality. These behaviours place a considerable burden on patients and on their carers and families. Design: An exploratory qualitative study. Methods: Using a convenience sampling approach, 13 carers were recruited to participate in semi-structured interviews. Interviews were conducted over the telephone. Verbatim transcripts were analysed using a thematic analysis approach. COREQ guidelines were adhered to in the reporting of this study. Results: Five main themes were identified: (a) realisation—developing awareness of ICB symptoms and their causes; (b) reacting—confronting and attempts to manage ICBs; (c) reaching out—help-seeking and selective disclosure; (d) reframing—shifting perspectives on ICBs over time; and (e) resignation—impact on relationships and facing the future. Conclusions: The profound impact of ICBs on quality of life, relationships and economic stability was clear in the carers’ accounts. Possible avenues for future clinical research are suggested. Relevance to clinical practice: The potentially devastating effects of ICBs provide a strong imperative for nurses and other health professionals to ensure that close monitoring for symptom development together with patient education is always part of practice.