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

Abstract

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.

Caregivers' burden and deep brain stimulation for Parkinson disease: A systematic review of qualitative studies

“…CGs struggled to adjust to a "new partner" after STN-DBS [26,28,32] like the ones who wanted to have "the life of a young man" [33], while also revealing fear about increased stress due to the change [31]. CGs' perceptions shifted from the very early to the maintenance post-STN-DBS period.…”

Caregiver Burden in Partners of Parkinsonian Patients with Deep Brain Stimulation

“…Despite improvement in motor function and higher social functioning of PD patients postoperatively, CB was variable and did not change in all caregivers 6 months after STN-DBS [ 38 , 44 , 45 , 46 ]. In a qualitative study with narrative semi-structured interviews and self-made drawings of PD patients and caregivers, heterogeneous reports were obtained [ 47 ]. Many patients and caregivers perceived the DBS “as the beginning of a new life”, “rebirth with clouds” and “renewal”, with improved “communication” and “better participation in everyday routines”.…”

“…Many patients and caregivers perceived the DBS “as the beginning of a new life”, “rebirth with clouds” and “renewal”, with improved “communication” and “better participation in everyday routines”. However, it was also conceived that “DBS is not perfect”, and, postoperatively, life still means “living with a sick person” [ 47 ] ( Figure 2 )…”

“… Individual perceptions of DBS effects by caregivers as published by [ 47 ]. A and B by Caregiver 1: preoperative ( A ) and postoperative ( B ) caregiver’s perception of her husband’s facial expression and improved communication after DBS.…”

Exploring the Caregiver Role after Deep Brain Stimulation Surgery for Parkinson’s Disease: A Qualitative Analysis

“…Restoration of the “old self” [ 22 ] gives insight into the return of the person with PD's functional abilities and mobility and how that affects their personality. Themes such as, “being different after DBS” [ 23 ], “clinical management of personality change” [ 22 ], and “the challenge of changes and constraint” (Haahr et al [ 21 ]) all focus on the adjustments needed to be made by caregivers to manage the changes DBS has made to the person with PD. All of these studies have given us important insights into how caregivers experience the changes in their caree's physical, psychological, and emotional state.…”