This study aimed to understand and gain insight into an informal caregiver program for caregivers of older stroke patients, which incorporates both skills training and education, in relation to... Show moreThis study aimed to understand and gain insight into an informal caregiver program for caregivers of older stroke patients, which incorporates both skills training and education, in relation to caregiver burden. Semi-structured, in-depth interviews with individual informal caregivers were conducted at admission, at discharge, and six weeks after discharge. The program consisted of informal caregiver meetings, walk-in days, psychoeducation, and weekend leave after admission to a rehabilitation stroke unit in a nursing home. Eleven informal caregivers participated in the study. The informal caregiver meetings and walk-in days provided more insight into the (level of) functioning of the stroke patients, more skills in guiding them, and better communication with the multidisciplinary care team. During weekend leave, caregivers experienced what their roles as caregivers entailed. Six weeks after discharge, caregivers said that they did not miss any guidance during admission and that they were positive about the future. About half of the caregivers found the caregiver situation disappointing, and combining care tasks with daily tasks appeared to be difficult. Offering informal caregivers a tailor-made program during rehabilitation and good communication helps to diminish caregiver burden in the post-discharge phase when their relatives are back home. Show less
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... Show moreBackground: 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. Show less
