Changes In Caregiver Burden Research Articles

Challenges for Family Caregivers of Persons With Mild Cognitive Impairment: A Qualitative Longitudinal Study.

Family caregivers of persons with mild cognitive impairment attempt to understand the behavioural and functional changes exhibited by their relative. However, how caregivers respond to initial changes and changes over time has not been explored. The purpose of this qualitative study was to explore the experience of family caregivers responding to changes in their relative's memory, behaviours, and physical functions over 2 years. Eleven family caregivers of a relative with mild cognitive impairment were purposively recruited from neurological clinics in Taiwan. Face-to-face semi-structured interviews were conducted within 6-months of referral; three follow-ups were conducted at 6-month intervals. Content analysis of 41 transcribed audio-recorded interviews revealed the longitudinal changes in their relative with cognitive impairment was made caregiving challenging. Three themes described the challenges: (1) Changes related to their relative's cognitive impairment, which included increases in mood fluctuations, erratic behaviours, and reductions in physical abilities; (2) changes in their relative's comorbidities, which included adapting to new symptoms and treatments for a chronic disease, monitoring medication adherence and drug interactions; and (3) changes in caregiver burden, which increased levels of stress, uncertainty, and anxiety resulting in greater role strain. Caregiving became more challenging with time, especially caregivers whose relative developed dementia during the study period. These findings offer insight into the trajectory of the experience of family caregivers attempting to understand changes in cognition, behaviours, and physical functions for their relative with mild cognitive impairment over 2 years, which could help mental healthcare providers develop support services to reduce caregiver role strain.

Family member reported symptom burden, predictors of caregiver burden and treatment effects in a goal-oriented community-based randomized controlled trial in the chronic phase of traumatic brain injury

BackgroundFamily members are often affected by the long-term consequences of traumatic brain injury, but are rarely involved in rehabilitation programs in the chronic phase. We thus do not know what family members´ main concerns are in the chronic phase, what factors are associated with perceived caregiver burden, and whether family members´ health and functioning improves due to rehabilitation efforts received by the patients. This study explored family-members` functioning, predictors of caregiver burden and effect for family members of a goal-oriented intervention in the chronic phase of traumatic brain injury.MethodsFamily members self-reported data measuring their caregiver burden, depression, general health, loneliness, and their evaluation of patient competency in everyday life, patient awareness levels, main problem areas (target outcomes) for the patient related to the brain injury, and demographic data were collected. Regression models were used to explore predictors of caregiver burden, and mixed models analysis was used to explore treatment effects.ResultsIn total, 73 family members were included, 39 in the intervention group and 34 in the control group. Moderate to high caregiver burden was reported by 40% of family members, and 16% experienced clinical levels of depression. Family member loneliness and their evaluation of the patient`s level of functional competency explained 57% of the variability in caregiver burden. There were no treatment-related changes in caregiver burden, family member depression or general health. At T2 there was however a significant reduction in how family members rated severity of target outcomes that the family members had nominated at baseline (-0.38, 95% CI, -0.75 to -0.02, p = 0.04), but not for the target outcomes the patients had nominated.ConclusionsA significant proportion of family members to patients in the chronic phase of TBI continue to experience challenging caregiver burden and emotional symptoms. Both family member-related and patient factors contribute to caregiver burden. Interventions targeting patient complaints do not automatically alleviate family members´ burden. It is important to address social support for family members early after injury, and there is a need for more interventions specifically targeting family members´ needs.Trial registrationThe trial was registered at ClinicalTrials.gov, NCT03545594 on the 4th of June 2018.

Caregiver burden in informal spousal caregivers predicts psychological and physical health in patients following coronary artery bypass graft surgery: a longitudinal clinical cohort study.

Previous research has shown that informal caregiver burden can have deleterious effects on patient recovery; however, this relationship has yet to be investigated in patients undergoing coronary artery bypass graft (CABG) surgery. This study aimed to examine the impact of the change of caregiver burden from pre- to post-surgery on patients' mental and physical health after CABG surgery. Ninety patient-caregiver dyads were assessed one month before the surgery, two months and one year after the surgery. Caregivers completed the Oberst Burden Scale to measure caregiver burden. Patients completed the Beck Depression Inventory to measure depressive symptoms, a subscale of the Hospital Anxiety and Depression Scale to measure anxiety symptoms, the Short Form-12 health assessment to measure health-related quality of life, and the Coronary Revascularisation Outcomes Questionnaire to measure surgery symptoms. Hierarchical linear regression analyses were conducted to explore the association between change in caregiver burden and post-surgery patient outcomes. A greater increase in caregiver burden from pre- to two-months post-surgery significantly predicted higher patients' depressive symptoms (β = 0.179, p = 0.010), anxiety symptoms (β = 0.114, p = 0.017), reported post-surgery symptoms (β = 0.335, p = 0.008) and reduced physical health-related quality of life (β = -0.358, p = 0.003), after controlling for a wide range of covariates. These findings were not replicated at a one-year follow-up. These results provide insights into the impact of caregiver burden on patient distress following CABG surgery, supporting the idea of psychological support interventions for caregivers to increase patients' short-term recovery outcomes.

Communicating visit information to family caregivers: How does method matter? A national survey.

The clinic visit is a critical point of contact for family caregivers. However, only 37% of family caregivers are able to accompany patients to visits. When they cannot attend, caregivers receive visit information to assist with their caregiving. However, little is known about how method of receiving information from clinic visits is associated with important caregiver outcomes. This study sought to determine whether mode of receiving clinic visit information (speaking with the patient, attending the visit, or using an after-visit summary [AVS]) was associated with changes in caregiver burden, caregiver preparedness, and the positive aspects of caregiving. Cross-sectional web-based survey of a national sample of adult family caregivers. Multiple linear regression models determined associations between communication modes and caregivers' burden, preparedness, and positive aspects of caregiving, adjusting for sociodemographic covariates. Respondents (N = 340) were mostly male (58%), White (59%), ranged from 18 to 85 years old, and supported patients with conditions including diabetes, dementia, and cancer. Speaking with patients was associated with increases in positive aspects of caregiving (95% CI = 2.01, 5.42) and an AVS was associated with increases in positive aspects of caregiving (95% CI = 0.4, 3.56) and preparedness for caregiving (95% CI = 0.61, 3.15). Using any method of receiving information from visits was associated with the greatest increase in preparedness, compared to not receiving visit information. We did not observe an association between method of communication and caregiver burden. Method of communicating visit information is associated with improvements in caregiver preparedness and the positive aspects of caregiving, though caregiver burden may be unaffected by information exchange. Given the limitations of current communication methods, future work should explore directionality of the associations we found and identify visit communication strategies with caregivers that optimize caregiver and patient outcomes.

Predictors of Burden for First-Ever Stroke Survivor's Long-Term Caregivers: A Study of KOSCO.

Long-term changes in caregiver burden should be clarified considering that extended post-stroke disability can increase caregiver stress. We assessed long-term changes in caregiver burden severity and its predictors. This study was a retrospective analysis of the Korean Stroke Cohort for Functioning and Rehabilitation. Patients with an acute first-ever stroke were enrolled from August 2012 to May 2015. Data were collected at 6 months and 6 years after stroke onset. The caregiver burden was measured with a subjective caregiver burden questionnaire based on the Korean version of the Caregiver Burden Inventory. The caregivers' characteristics and patients' clinical and functional status were also examined at each follow-up. A high caregiver burden, which suggests a risk of burnout, was reported by 37.9% and 51.7% of caregivers at 6 months and 6 years post-stroke, respectively. Both the caregiver burden total score and proportion of caregivers at risk of burnout did not decrease between 6 months and 6 years. The patients' disability (OR = 11.60; 95% CI 1.58-85.08; p = 0.016), caregivers' self-rated stress (OR = 0.03; 95% CI 0.00-0.47; p = 0.013), and caregivers' quality of life (OR = 0.76; 95% CI 0.59-0.99; p = 0.042) were burden predictors at 6 months. At 6 years, only the patients' disability (OR = 5.88; 95% CI 2.19-15.82; p < 0.001) and caregivers' psychosocial stress (OR = 1.26; 95% CI 1.10-1.44; p = 0.001) showed significance. Nearly half of the caregivers were at risk of burnout, which lasted for 6 years after stroke onset. The patients' disability and caregivers' stress were burden predictors in both subacute and chronic phases of stroke. The findings suggest that consistent interventions, such as emotional support or counseling on stress relief strategies for caregivers of stroke survivors, may reduce caregiver burden. Further research is needed to establish specific strategies appropriate for Korean caregivers to alleviate their burden in caring for stroke patients.

Characteristics of Changes in Caregiver Burden during Follow-up at a Memory Clinic: A Retrospective Cohort Study.

Because dementia is a long-term condition, the appropriate involvement of health-care professionals is considered important. However, little is known about the factors associated with changes in family caregiver burden. To clarify changes in family caregiver burden and associated factors during follow-up at a memory clinic. A retrospective cohort study was conducted, enrolling 495 pairs of patients with dementia or mild cognitive impairment and their family caregivers. A total of 120 pairs completed the second evaluation. The caregiver burden was assessed using the Zarit Burden Interview (ZBI). Data at the initial visit and after an average follow-up of about 2 years were compared and analyzed. At initial visit, the patients' mean age, Mini-Mental State Examination (MMSE) and ZBI scores were 78.6±5.6 years, 23.3±3.5, and 22.6±16.7, respectively. At follow-up, MMSE scores decreased (21.4±4.5, p < 0.001), but ZBI scores remained similar (22.5±13.6). When the difference in ZBI scores between the two time points was defined as ΔZBI, and the related factors were analyzed by multiple regression analysis, ZBI scores at the initial visit, start of psychotropic drug, and decrease of neuropsychiatric symptoms were identified as significant factors (p < 0.001, p = 0.003, p < 0.001, respectively). A significant negative correlation was found between ZBI scores at the initial visit and ΔZBI (r = -0.588, p < 0.001). These findings suggest the importance of assessing changes in the burden experienced by family caregivers during the disease follow-up.

The effectiveness of virtual passport, an app-based intervention, for dementia care.

This study aimed to confirm the effectiveness of the virtual passport for dementia care. The virtual passport is an application (app) tool connecting healthcare professionals, dementia care sites, and people living with dementia (PLWD) and their family caregivers. This tool assists case managers in hospitals by providing individualized care plans and health education to PLWD and their caregivers. The dementia quality indicator achievement rates, care needs investigation and fulfillment, severity of behavioral and psychological symptoms of dementia (BPSD), and changes in caregiver burden and depression are measured at the initial interview and 6 and 12 months after the intervention. We enrolled 57 and 54 patients and their caregivers in the virtual passport and routine care groups, respectively. Compared to the control group, six quality indicators in the passport group showed significantly higher achievement at 6 months after using the virtual passport. Case managers addressed more care needs at 6 months (1.37 vs 0, p < 0.001) and 12 months (1.32 vs 0, p < 0.001). Improvement in severity of neuropsychiatric symptoms (neuropsychiatric inventory (NPI) irritability/lability difference: -0.58 vs 0.22, p = 0.044; NPI agitation/aggression difference =-0.78 vs 0.00, p = 0.042) were also observed. No obvious influence was found in caregiver burden and depression after using the virtual passport. The virtual passport is an effective information technology tool in improving the quality of dementia care, assisting case management in identifying more care needs, and reducing the severity of BPSD.

Changes in Caregiver Burden in Older Adults' Caregivers During the COVID-19 Outbreak.

This study investigated the changes in caregiver burden during the coronavirus disease 2019 (COVID-19) pandemic. The study sample included 827 caregivers for older adults (65+) from the National Health and Aging Trends Study (NHATS) COVID-19 data set. We used paired t-tests to analyze data. The caregivers' assistance in basic and instrumental activities of daily living for care recipients, as well as the amount of time they provided, increased significantly (all ps < .001) during the pandemic compared with before. Approximately, 40% of caregivers reported changes in the amount of assistance they provided during the pandemic. Financial, emotional, and physical difficulties among caregivers have increased, with emotional difficulties being the most frequently reported. The majority of caregivers reported not utilizing any social services during the pandemic. The pandemic may have heightened the caregiver burden. It is important to ensure that caregivers have access to and utilize social services in a physically and psychologically safe manner.

The impact of regular, low-dose, sustained-release morphine for chronic breathlessness on caregiver burden: An exploratory analysis of the BEAMS trial

Background: Chronic breathlessness adversely impacts people with chronic obstructive pulmonary disease and their caregivers (family and friends), who may, in turn, experience significant burden due to their caregiving role. Sustained-release morphine may reduce chronic breathlessness in some patients, which may have an impact on caregivers’ perceived burden. Aim: To explore the impact on caregiver burden of active treatment of people with chronic breathlessness (modified Medical Research Council (mMRC) ⩾ 3) and chronic obstructive pulmonary disease (COPD) with regular, low-dose, sustained-release morphine within a multi-site, double-blind, randomised, placebo-controlled trial. Design: Exploratory analysis of self-reported caregiver burden at baseline and end of week 3 in a randomised, double-blind, placebo-controlled study. Caregiver measures included: demographics and perceived burden (Zarit Burden Interview 12-item short-form questionnaire). Patient measures included: worst breathlessness and FitBitR-measures. Setting/participants: All consenting caregivers of trial patient participants in a multi-site study recruiting from palliative care and respiratory services. Results: Caregivers (n = 49; 59% women; median age 68 years [IQR 50–75]) reported median baseline caregiver burden 12 [IQR 5–17], with 53% reporting high burden (⩾13). Eighty-four percent of caregivers reported no change in burden. In people whose worst breathlessness improved, caregiver burden moved in the same direction, though the correlation was not significant (rs = 0.25, p = 0.17). Conversely, caregiver burden worsened as patients’ minutes lightly active increased, with the correlation being significant (rs = 0.56, p = 0.04). Conclusions: Caregivers reported high levels of caregiver burden, but patients’ response to treatment in terms of their symptom and function may influence change in caregiver burden over a three-week period.

Quality of Relationships and Caregiver Burden: A Longitudinal Study of Caregivers for Advanced Cancer Patients.

In a longitudinal design, this study investigates the role of the quality of relationships in the well-being of caregivers for a family member with advanced cancer, specifically, the quality of relations among family members and the caregiver's commitment to caregiving. Following the stress process model, good quality of relations and caregiver's high commitment should be resources mitigating caregiver burden, even though overinvestment in the caregiver role may lead to the opposite outcome. Data were drawn from a longitudinal study of 336 caregivers of advanced cancer patients in an urban community, who were interviewed shortly after patient diagnosis and again 3 months later. Caregiver burden is measured by 4 subscales (17 items) of the Caregiver Reaction Assessment. We used a random-effect model to investigate the association between caregiver burden and the 2 focused contributing factors-caregiver commitment and family relationship quality-when other covariates were controlled. A fixed-effect model then examines the association between the changes in caregiver burden and related time-varying factors, including caregiver commitment, when family relationship quality was used as a moderator. Both the random and fixed-effect models consistently show that a cancer caregiver's positive commitment to the patient reduces caregiver burden, and family relationship quality provides an overall moderating influence that reduces the felt burden. The quality of relations between the caregiver and patient and with others in the family network is critical in understanding caregiver burden in advanced cancer and should be viewed as part of long-term family dynamics.

Caregiver Experiences Participating in a Home-Based Primary Care Program: A Pragmatic Evaluation Including Qualitative Interviews and Quantitative Surveys.

The aim of this evaluation was to assess caregiver experience and burden during their first year in a geriatric home-based primary care (HBPC) program with qualitative interviews and surveys. HBPC included in-home visits for homebound, older adult patients. Seventeen caregivers, with varied amount of experience with HBPC, participated in semi-structured interviews. Change in caregiver burden from baseline was captured for 44 caregivers at 3months post-enrollment, 27 caregivers at 6months, and 22 caregivers at 12months. Satisfaction survey was administered at these timepoints, but the last response of 48 caregivers was analyzed. Caregiver interviews revealed three themes: caregiving stressors, reliance on HBPC in relation to other medical care, and healthcare in the home. Surveyed caregivers were highly satisfied, but burden did not change substantially over the 1year intervention. Caregivers appreciated HBPC reduced patient transportation and provided satisfactory primary care, but additional research is needed to tailor this care to reduce caregiver burden.

A prospective observational study of change in caregiver burden and psychological distress in caregivers of patients with alcohol dependence.

Alcohol use disorder has a substantial impact on patients' caregivers, leading to burden and adverse effects on their psychological health. Currently, there is limited literature which is available to suggest whether the burden and psychological distress of the family members change when patients with alcohol dependence undergo treatment. This study aimed to longitudinally examine the change in burden, depression, anxiety, and stress experienced by caregivers of patients with alcohol dependence undergoing treatment. This prospective observational study recruited treatment-seeking men with alcohol dependence and their caregivers as dyads. The burden, depression, anxiety, and stress of caregivers were assessed at baseline and at six weeks, using the Family Burden Interview Schedule and Depression Anxiety Stress Scale, respectively. Pre and post values were compared using paired t-test. Interaction effects of resumption of drinking were assessed using repeated measures test. Of the 101 dyads recruited in the study, 60 could be followed up at six weeks. Significant decrements were seen in burden, depression, anxiety, and stress of caregivers at six weeks compared to baseline (mean 62.3%, 54.2%, 65.9%, and 53.4%, respectively, all P < 0.001). The decrement in burden and depression was lower in those caregivers where the patients had resumed alcohol use within the span of six weeks. Findings suggest that engagement in treatment by patients with alcohol dependence may reduce the burden and psychological distress among their caregivers, more so in situations where the patients had quit alcohol. However, the change in burden and psychological distress could be due to several other factors as well.

ASSOCIATION BETWEEN INCREASED CAREGIVER BURDEN AND MENTAL HEALTH DURING THE COVID-19 PANDEMIC IN JAPAN

Abstract During the COVID-19 pandemic, informal caregivers’ mental health was more deteriorated than non-caregivers. The objective of this study was to examine the association between increased caregiver burden and severe psychological distress (SPD) during the pandemic. We used cross-sectional data from a nationwide internet survey conducted between August and September 2020 in Japan. Of 25,482 participants aged 15–79 years, 1,920 informal caregivers were analyzed (mean age, 52.3 ± 15.9 years; men, 48.8%). SPD was defined as the Kessler 6 Scale (K6) ≥ 13. The self-rated change in caregiver burden was measured with the single question item. A binary logistic regression analysis was used to examine the association between SPD and increased caregiver burden, adjusted for demographic, socioeconomic, health, and caregiving variables. To examine the differential association between increased caregiver burden and SPD, interaction terms were added and binary logistic regression was separately conducted in all variables. Of total caregivers, 56.7% reported the increased caregiver burden and 19.3% were SPD. Increased caregiver burden was significantly associated with SPD, with an adjusted odds ratio 1.90 (95% confidence interval 1.37–2.66). The association between increased caregiver burden and SPD was stronger among married caregivers, with disease treatment, and with their care-receiver’s care need level 1–2 (Japanese long term care service levels). This study demonstrated that increased caregiver burden was associated with SPD during the pandemic. Therefore, measures against mental health for the caregivers with increased caregiver burden need to be implemented immediately.

The Effect of COVID‐19 Lockdown on Dementia Caregivers in the U.S.

AbstractBackgroundIn response to the COVID‐19 pandemic, mandated state lockdowns in the U.S. profoundly changed day‐to‐day life for many individuals providing informal care for a person with dementia or mild cognitive impairment. The present study explored changes in caregiver burden, depression, and anxiety associated with lockdown.MethodWe used questionnaire data collected as part of a randomized controlled trial conducted between February 2019 ‐ June 2021. Participants (N = 260 familial caregivers for people with dementia or mild cognitive impairment living in the US) completed a baseline survey at the start of the study and follow‐up surveys every three months for six‐nine months. Questionnaires included the Zarit Burden Index, the Beck Anxiety Inventory, and the Center for Epidemiological Studies Depression scale. We determined the date of lockdown based on the first lockdown order issued in the participant’s state of residence. For each survey score, we also determined the number of days before or after the lockdown date.ResultThe mean age of caregivers in the sample was 63.93 years and 68% were female. A regression predicting caregiver burden from the days before/after lockdown revealed that burden decreased over time, (β = ‐0.008, p = .051). Consistent with this, comparing the average of all scores obtained after lockdown with those obtained before lockdown indicated that burden decreased during lockdown, (t(172) = ‐2.52, p = .013). Levels of caregiver anxiety and depression were not associated with days before/after lockdown and did not change from before lockdown to after lockdown (p’s &gt;.05).ConclusionSurprisingly, caregivers in our sample experienced a decrease in burden associated with COVID lockdown. We believe this may result from lockdown providing relief from caregivers’ other responsibilities (e.g., being able to work from home, reduced social obligations). The lack of changes in anxiety and depression may reflect this as well, with these areas of relief offsetting some of the stresses that would normally result in worsening mood for caregivers. In future research we hope to further explore these complex relationships among lockdown, burden, depression, and anxiety.

Evaluation of the effects of robot-assisted gait training on bowel function in children with cerebral palsy and the caregiver burden: A pilot study.

The aim of this study was to investigate the effects of robot-assisted gait training (RAGT) on bowel function by measuring the frequency of evacuation, stool consistency, and severity of constipation in children with cerebral palsy (CP) and determining caregiver burden. This retrospective pilot study was conducted with 30 children (16 males, 14 females; mean age 8.8±3.2 years; range, 6 to 11 years) with CP between January 2019 and July 2019. Patients were equally divided into two groups: the RAGT group and the control group. Both groups underwent conventional physical therapy. The RAGT group underwent RAGT in addition to physical therapy. The results of the Bristol Stool Scale, the Constipation Assessment Scale, and the frequency of defecation before and after the study were recorded. Caregivers of children in both groups were asked to answer five questions regarding their burden at the beginning of the study and the end of the study. While a significant improvement was found in defecation frequency in the RAGT group (p=0.01), defecation frequency was not significantly improved in the control group (p>0.999). Bristol Stool Scale scores changed significantly within both groups (p<0.05). Constipation Assessment Scale scores significantly changed only in the RAGT group (p=0.01). A significant positive change in caregiver burden was observed in the RAGT group (p<0.05). Robot-assisted gait training has positive effects on the frequency of defecation, stool consistency, and constipation severity in children with CP and caregiver burden.

Association between increased caregiver burden and severe psychological distress for informal caregivers during the COVID-19 pandemic in Japan: A cross-sectional study

ObjectiveDuring the coronavirus disease 2019 (COVID-19) pandemic, informal caregivers’ mental health deteriorated more than that of non-caregivers. We examined the association between increased caregiver burden during the pandemic and severe psychological distress (SPD). MethodsWe used cross-sectional data from a nationwide internet survey conducted between August and September 2020 in Japan. Of 25,482 participants aged 15–79 years, 1,920 informal caregivers were included. SPD was defined as Kessler 6 Scale (K6) score ≥ 13. Self-rated change in caregiver burden was measured retrospectively with a single question item. Binary logistic regression analysis was used to examine the association between SPD and increased caregiver burden during the pandemic, adjusted for demographic, socioeconomic, health, and caregiving variables. To examine the differential association between increased caregiver burden and SPD, interaction terms were added and binary logistic regression was separately conducted for all variables. ResultsParticipants’ mean age was 52.3 years (standard deviation 15.9), 48.8% of participants were male, 56.7% reported increased caregiver burden, and 19.3% exhibited SPD. Increased caregiver burden was significantly associated with SPD (adjusted odds ratio: 1.90; 95% confidence interval: 1.37–2.66). The association between increased caregiver burden and SPD was stronger among caregivers who were married, those undergoing disease treatment, and those with a care-receiver with a care need level of 1–2. ConclusionsThe results revealed that more than half of caregivers reported increased caregiver burden, and increased caregiver burden was associated with SPD during the pandemic. Measures supporting mental health for caregivers with increased caregiver burden should be implemented immediately.

Biweekly fluctuations of neuropsychiatric symptoms according to the Neuropsychiatric Inventory: Erratic symptoms or scores?

ObjectivesThis study investigates the stability of neuropsychiatric symptoms (NPS) assessed biweekly using the Neuropsychiatric Inventory (NPI) in a memory clinic population during a 6 week period.MethodsTwenty‐three spousal caregivers (mean [SD] age = 69.7 [8.8], 82.6% female) of 23 patients (43.5% had dementia) completed all assessments. The NPI was assessed four times during 6 weeks. We examined whether NPI domains were present during all four assessments, studied within‐person variation for each NPI domain, and calculated Spearman's correlations between subsequent time‐points. Furthermore, we associated repeated NPI assessments with repeated measures of caregiver burden to examine the clinical impact of changes in NPI scores over time.ResultsThe course of NPS was highly irregular according to the NPI, with only 35.8% of the NPI domains that were present at baseline persisted during all 6 weeks. We observed large within‐person variation in the presence of individual NPI domains (61.3%, range 37.5%–83.9%) and inconsistent correlations between NPI assessments (e.g., range r s = 0.20–0.57 for agitation, range r s = 0.29–0.59 for anxiety). Higher NPI total scores were related to higher caregiver burden (r s = 0.60, p < 0.001), but changes in NPI total scores were unrelated to changes in caregiver burden (r s = 0.16, p = 0.20).ConclusionsWe observed strong fluctuations in NPI scores within very short time windows raising the question whether this represents erratic symptoms and/or scores. Further studies are needed to investigate the origins of these fluctuations.

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

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.

Factors Associated with Increased Caregiver Burden of Informal Caregivers during the COVID-19 Pandemic in Japan.

This study’s objective was to explore the association between various factors and the increased caregiver burden of informal caregivers during the COVID-19 pandemic. On February, 2021, 700 informal caregivers completed an online survey. We assessed the change in caregiver burden during the COVID-19 pandemic. Among all caregiver participants, 287 (41.0%) complained of an increased caregiver burden due to the COVID-19 pandemic. The factors associated with increased caregiver burden were depressive symptoms in caregivers [odds ratio (OR), 2.20; 95% confidence interval (CI), 1.50–3.23], dementia (OR, 2.48; 95%CI, 1.07–5.73) and low Barthel Index scores (OR, 2.01; 95%CI, 1.39–2.90) in care receivers, care days (OR, 1.09; 95%CI, 1.01–1.17) and times (OR, 1.06; 95%CI, 1.01–1.10), and use of home care service (OR, 1.46; 95%CI, 1.01–2.10) and visiting care service (OR, 1.71; 95%CI, 1.20–2.45). These findings suggest we need to pay attention to the physical and mental health of both the care receivers and caregivers.

An App-Based Mindfulness-Based Self-compassion Program to Support Caregivers of People With Dementia: Participatory Feasibility Study.

BackgroundThe number of persons with dementia is steadily growing, as is the number of individuals supporting persons with dementia. Primary caregivers of persons with dementia are most often family members or spouses of the persons with dementia, and they are more likely to experience increased stress and other negative effects than individuals who are not primary caregivers. Although in-person support groups have been shown to help buffer the negative impacts of caregiving, some caregivers live in isolated or rural communities and are unable to make the burdensome commitment of traveling to cities. Using an interdisciplinary approach, we developed a mobile smartphone support app designed for primary caregivers of persons with dementia, with the goal of reducing caregiver burden and easing stress. The app features a 12-week intervention, largely rooted in mindfulness-based self-compassion (MBSC), because MBSC has been linked to minimizing stress, depression, and anxiety.ObjectiveThe primary objectives of our program are twofold: to explore the feasibility of a 12-week mobile support program and to conduct an initial efficacy evaluation of changes in perceived caregiver burden, coping styles, and emotional well-being of caregivers before and after the program.MethodsOur feasibility study used a 2-phase participatory pretest and posttest design, focusing on acceptability, demand, practicality, implementation, and efficacy. At phase I, we recruited 57 primary caregivers of persons with dementia (mean age 76.3, SD 12.9 years), comprising spouses (21/57, 37%), children (21/57, 37%), and friends or relatives (15/57, 26%) of persons with dementia, of whom 29 (51%) completed all measures at both pre- and postprogram. The content of the program featured a series of MBSC podcasts. Our primary outcome measure was caregiver burden, with secondary outcome measures including coping styles and emotional well-being. Daily ecological momentary assessments enabled us to ask participants, “How are you feeling today?” Phase II of our study involved semistructured follow-up interviews with most participants (n=21) who completed phase I.ResultsOur findings suggest that our app or program meets the feasibility criteria examined. Notably, participants generally accepted the program and believed it could be a useful resource. Emotional well-being increased significantly (P=.04), and emotion-based coping significantly decreased (P=.01). Participants generally considered the app or program to be a helpful resource.ConclusionsAlthough there were no significant changes in caregiver burden, we were encouraged by the increased emotional well-being of our participants following the completion of our program. We also conclude that our app or program demonstrated feasibility (ie, acceptability, practicality, implementation, and efficacy) and can provide a much-needed resource for primary caregivers of persons with dementia. In the subsequent version of the program, we will respond to participant feedback by incorporating web-based weekly sessions and incorporating an outcome measure of self-compassion.