Abstract: Deep brain stimulation (DBS) for Parkinson’s disease successfully alleviates motor symptoms, but unanticipated changes in personality, self, and relationships can occur. Little is known about how these nonmotor outcomes affect patients and families. We prospectively examined the experience and meaning of DBS-related changes in personality and self for patients and caregivers. In-depth, semi-structured interviews were conducted with 22 participants (11patient–caregiver dyads) before and 9 months after DBS and analyzed using thematic analysis. We identified three themes present prior to DBS that reflected a time of anticipation, while three themes present after DBS reflected a process of adjustment. Participants noted both positive and negative personality changes, with some, but not all, attributing them to the stimulation. The risk of stimulation-related personality change should be weighed against the procedure’s motor benefits and considered in the context of disease- and medication-related personality changes. Clinical implications including perioperative education and follow-up management are discussed.

Keywords: personality; self; identity; Parkinson’s disease; deep brain stimulation; caregivers; relationships; illness


Thomson Cassandra J., Segrave Rebecca A., Racine Eric, Warren Narelle, Thyagarajan Dominic, Carter Adrian. ‘He’s back so I’m not alone’: The impact of deep brain stimulation on personality, identity and relationships in Parkinson’s disease. Qualitative Health Research, 2020; 30(14) 2217– 2233. https://doi.org/10.1177/1049732320951144.