Caregiver burden worsens in the second year after subthalamic nucleus deep brain stimulation for Parkinson's disease

Jackowiak, Eric; Maher, Amanda Cook; Persad, Carol; Kotagal, Vikas; Wyant, Kara J.; Heston, Amelia; Patil, Parag G.; Chou, Kelvin L.

doi:10.1016/j.parkreldis.2020.06.036

Cited by 9 publications

(8 citation statements)

References 22 publications

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“…Our Emulated Target Trial observed no independent association between DBS and caregiver burden; scores for caregiver burden did not differ between patients before and after surgery even after adjustment for other relevant covariates. A previous observational study suggested that this may be due to an increase in caregiver demands after DBS surgery [29]. Moreover, both the current study, as well as previous studies, indicates that neuropsychiatric symptoms of PD such as depression, anxiety, and apathy may have a great influence on caregiver burden, even more so than motor symptoms [5].…”

Section: Discussionsupporting

confidence: 63%

Patient-Related Factors Influencing Caregiver Burden in Parkinson’s Disease Patients: Comparison of Effects Before and After Deep Brain Stimulation

Hienen

Kuiper

Middelkoop

et al. 2022

JPD

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Background: Caregivers of Parkinson’s disease (PD) patients provide important support during the pre- and postoperative phase of deep brain stimulation (DBS). High levels of caregiver burden have been reported after DBS. However, a comparison between preoperative and postoperative burden and associated factors has been insufficiently studied. Objective: To investigate the influence of DBS on caregiver burden, and to identify the differential impact of patient-related factors on caregiver burden before and after DBS. Methods: Consecutive patients referred for DBS eligibility screening or during one-year follow-up assessments were included. Caregiver burden was measured with the short Zarit Burden Interview (ZBI-12). Inverse Probability Weighting (IPW) was used to compare caregiver burden between preoperative and postoperative assessments. Results: We included 47 patients (24 screening, 23 follow-up) (median age 65 years, 29.4% female sex). DBS did not impact caregiver burden (screening: median ZBI-12 9.5 (IQR 3.25, 16.75); follow-up median ZBI-12 6 (IQR 4, 14); IPW-coefficient 0.57 (95% CI –2.75, 3.89)). Worse caregiver burden during DBS screening was associated with worse patient-related scores on depressive symptoms, anxiety, QoL, and impulsiveness. Worse scores on depressive symptoms, anxiety, apathy, postural-instability-gait-disorder, and QoL were associated with worse caregiver burden at one-year follow-up. Conclusion: DBS appears not associated with changes in caregiver burden. Various symptoms are valued differently between screening and follow-up assessments in terms of caregiver burden. Early recognition of caregivers “at risk” may improve guidance of patient-caregiver dyads throughout the DBS process.

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Section: Discussionsupporting

confidence: 63%

Patient-Related Factors Influencing Caregiver Burden in Parkinson’s Disease Patients: Comparison of Effects Before and After Deep Brain Stimulation

Hienen

Kuiper

Middelkoop

et al. 2022

JPD

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“…In this regard, our data report that a relational readjustment, whether positive or negative, occurred after surgery, with the possibility that, by developing conjugal conflicts hard to solve, CGs might leave or be left by the partner [45].…”

Section: Discussionmentioning

confidence: 99%

“…CGs of PwP with these symptoms experienced a more substantial burden [11]. STN‐DBS can increase apathy and may cause CGs' distress, as it correlates with higher levels of CB [45]. As mentioned, partners struggled to find an etiological explanation for those neuropsychological changes that were transient [10].…”

Section: Discussionmentioning

confidence: 99%

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

Cavallieri,

Ghirotto,

Sireci

et al. 2023

Euro J of Neurology

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Background and purposeThe impact of subthalamic nucleus deep brain stimulation (STN‐DBS) on caregivers' burden is understudied. We perform a systematic review and meta‐synthesis aggregating qualitative studies involving partners of people with Parkinson disease (PwP) to explore their experiences and unmet needs.MethodsA systematic review for retrieving qualitative studies included six databases: MEDLINE, Embase, CINAHL, Cochrane, PsycInfo, and Scopus. Inclusion criteria were as follows: (i) studies on the experience of caregivers of PwP in the context of STN‐DBS, (ii) English peer‐reviewed articles, and (iii) qualitative or mixed methods studies reporting caregivers' quotations. After the appraisal of included studies, we performed meta‐synthesis of qualitative findings. Descriptive themes and conceptual elements related to PwP partners' experiences and unmet needs were generated.ResultsA total of 1108 articles were screened, and nine articles were included. Three categories were identified: (i) dealing with Parkinson disease (PD) every day (the starting situation characterized by the impact of PD on ordinary life; the limitations to partners' socialization; partners' efforts in stepping aside for love and care activities), (ii) facing life changes with STN‐DBS (the feeling of being unprepared for changes; the fear and concern due to loved ones' behavioral changes; struggling to find an explanation for those changes), and (iii) rebuilding the role of caregiver and partner after STN‐DBS.ConclusionsThis meta‐synthesis elucidates concerns, challenges, and unmet needs of partners of PwP who underwent STN‐DBS. It is important to provide them with information, education, and adequate support to face these challenges. Professionals need to involve partners in the care and decision process, because STN‐DBS‐related outcomes do not depend solely on the well‐being of PwP but also on the well‐being of individuals surrounding them.

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“…DBS is a symptomatic, but not disease-modifying therapy; thus, in the long-term, disease progression with re-emergence of motor symptoms, onset of cognitive impairment and loss of autonomy of PD patients might result in the reoccurrence of increased CB [ 54 ]. This might contribute to the observation that CB increases in caregivers of some PD patients within the first 2 years after STN-DBS [ 55 ]. However, in another 2-year follow-up of younger (<65 years) and elderly (>65 years) STN-DBS patients, CB decreased in relatives of both patient groups, even in caregivers of elderly PD patients [ 56 ].…”

Section: Postoperative Aspects Of Caregiver Burdenmentioning

confidence: 99%

Caregiver Burden in Partners of Parkinsonian Patients with Deep Brain Stimulation

Gülke

2022

Brain Sciences

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In Parkinson’s disease (PD) patients, the progressive nature of the disease and the variability of disabling motor and nonmotor symptoms contribute to the growing caregiver burden of PD partners and conflicts in their relationships. Deep brain stimulation (DBS) improves PD symptoms and patients’ quality of life but necessitates an intensified therapy optimization after DBS surgery. This review illuminates caregiver burden in the context of deep brain stimulation, framing both pre- and postoperative aspects. We aim to provide an overview of perioperative factors influencing caregiver burden and wish to stimulate further recognition of caregiver burden of PD patients with DBS.

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Caregiver burden worsens in the second year after subthalamic nucleus deep brain stimulation for Parkinson's disease

Cited by 9 publications

References 22 publications

Patient-Related Factors Influencing Caregiver Burden in Parkinson’s Disease Patients: Comparison of Effects Before and After Deep Brain Stimulation

Patient-Related Factors Influencing Caregiver Burden in Parkinson’s Disease Patients: Comparison of Effects Before and After Deep Brain Stimulation

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

Caregiver Burden in Partners of Parkinsonian Patients with Deep Brain Stimulation

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