“He’s Back so I’m Not Alone”: The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson’s Disease

Thomson, Cassandra; Segrave, Rebecca; Racine, Éric; Warren, Narelle; Thyagarajan, Dominic; Carter, Adrian

doi:10.1177/1049732320951144

Cited by 32 publications

(53 citation statements)

References 58 publications

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“…However, some quantitative studies show significant changes in personality and mood after applying DBS in PD [ 34 , 35 ]. We agree with other authors that pre-determined scales or standardized questionnaires may not capture the magnitude of all the changes in personality, identity, or self-perception that patients may face while being treated with DBS [ 36 , 37 ]. These changes could be due not only to DBS side effects but also to its interaction with PD progression and oral medication, as many patients continue to require medication, although usually in lower doses than before DBS intervention [ 7 ].…”

Section: Introductionsupporting

confidence: 88%

Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

Gámez

Brugger

Biller‐Andorno

2021

IJERPH

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Parkinson’s disease (PD) has a large impact on patients’ physical and mental health, which also greatly affects their family caregivers. Deep brain stimulation (DBS) has emerged as an effective treatment for PD, but different authors have expressed their concerns about the potential impact of DBS on personality and identity. Our study aims at better understanding how patients and family caregivers experience life with PD and DBS, the impact of both on their personal and social lives, and their perception of the changes that have occurred as a result of the disease and the treatment. Our study applies a multimodal approach by means of narrative semi-structured interviews and drawings. Seven principal themes have been identified: “everyone’s Parkinson’s is different”, “changing as a person during the disease”, “going through Parkinson’s together”, “DBS improved my life”, “I am treated with DBS but I have Parkinson’s still”, “DBS is not perfect”, and “being different after DBS”. PD is perceived as an unpredictable and heterogeneous disease that changes from person to person, as does the effect of DBS. While DBS side-effects may have an impact on patients’ personality, behavior, and self-perception, PD symptoms and drug side-effects also have a great impact on these aspects.

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Section: Introductionsupporting

confidence: 88%

Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

Gámez

Brugger

Biller‐Andorno

2021

IJERPH

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“…Methodologically, the question of whether closedloop devices will have such unintended and potentially destabilizing effects calls for inductive, case-based research designs that allow patients to share their experiences in an unstructured way (see for instance Thomson et al 2020). Unlike a one-time curative therapy like resection, closed-loop neuromodulation is a chronic, long-term and continuous treatment.…”

Section: Discussionmentioning

confidence: 99%

Closed-Loop Neuromodulation and Self-Perception in Clinical Treatment of Refractory Epilepsy

et al. 2021

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Background: Newer "closed-loop" neurostimulation devices in development could, in theory, induce changes to patients' personalities and self-perceptions. Empirically, however, only limited data of patient and family experiences exist. Responsive neurostimulation (RNS) as a treatment for refractory epilepsy is the first approved and commercially available closed-loop brain stimulation system in clinical practice, presenting an opportunity to observe how conceptual neuroethical concerns manifest in clinical treatment. Methods: We conducted ethnographic research at a single academic medical center with an active RNS treatment program and collected data via direct observation of clinic visits and in-depth interviews with 12 patients and their caregivers. We used deductive and inductive analyses to identify the relationship between these devices and patient changes in personality and self-perception. Results: Participants generally did not attribute changes in patients' personalities or self-perception to implantation of or stimulation using RNS. They did report that RNS affected patients' experiences and conceptions of illness. In particular, the capacity to store and display electrophysiological data produced a common frame of reference and a shared vocabulary among patients and clinicians. Discussion: Empirical experiences of a clinical population being treated with closed-loop neuromodulation do not corroborate theoretical concerns about RNS devices described by neuroethicists and technology developers. However, closed-loop devices demonstrated an ability to change illness experiences. Even without altering identify and self-perception, they provided new cultural tools and metaphors for conceiving of epilepsy as an illness and of the process of diagnosis and treatment. These findings call attention to the need to situate neuroethical concerns in the broader contexts of patients' illness experiences and social circumstances.

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“…The semi-structured interview was a strength of the study. We wanted to capture the unique experience of Patti and providing open-ended questions promotes responses, which reflect a genuine human narrative through their ambiguity and complexity (Thomson et al, 2020).…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Living in a care home during COVID-19: a case study of one person living with dementia

Davies-Abbott

Jones

Windle

2021

QAOA

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Purpose This paper aims to understand the lived experience of a person living with dementia in a care home during the COVID-19 pandemic. It responds to the absence in research of the voices of people with dementia living in care homes during the pandemic. Design/methodology/approach The paper adopts a single case study design applied thematic analysis to semi-structured interview data to discover the experiences of one person living with dementia in a care home during a period of lockdown. Findings Five themes reveal how the participant responded to the practical and emotional challenges of the pandemic: autonomy; fears; keeping connected; keeping safe and other people living with dementia. These themes highlight the participant’s ability to adapt, accept and dispute lockdown restrictions, revealing considerable insight into their situation. Research limitations/implications The pandemic has restricted access to care homes, which informed the single case study design. This approach to the research may restrict the generalisability of the findings. Other researchers are encouraged to include the voices of people with dementia living in care homes in further studies. Practical implications Implications for practice, presented in this paper, promote quality psychosocial approaches when health-care workers engage with people living with dementia during periods of restricted activity. Originality/value Unlike other studies about the impact of the pandemic on care homes, this paper explores the experience of the pandemic in care homes from the perspective of a person living with dementia.

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“He’s Back so I’m Not Alone”: The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson’s Disease

Cited by 32 publications

References 58 publications

Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

Closed-Loop Neuromodulation and Self-Perception in Clinical Treatment of Refractory Epilepsy

Living in a care home during COVID-19: a case study of one person living with dementia

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