Influence of Positive and Negative Dimensions of Dementia Caregiving on Caregiver Well-Being and Satisfaction With Life: Findings From the IDEAL Study

ObjectiveThe aim of this study was to identify the potential impact of positive and negative dimensions of caregiving on caregiver well-being and satisfaction with life (SwL).MethodsThis study used time-point one data from the Improving the experience of Dementia and Enhancing Active Life (also known as IDEAL)cohort study that involved 1,283 informal caregivers of people in the mild-to-moderate stages of dementia recruited from 29 sites within Great Britain. Multivariate linear regression modeling was used to investigate the associations between positive dimensions of caregiving (measured by caregiving competence and perceptions of positive aspects of caregiving), negative dimensions of caregiving (measured by caregiving stress and role captivity), and caregiver well-being and SwL.ResultsLower well-being was associated with low caregiving competence (–13.77; 95% confidence interval [CI]:–16.67, –10.87), perceiving fewer positive aspects of caregiving (–7.67; 95% CI:–10.26, –5.07), high caregiving stress (–24.45; 95% CI:–26.94, –21.96), and high role captivity (–15.61; 95% CI:–18.33, –12.89). Lower SwL was associated with low caregiving competence (–4.61; 95% CI:–5.57, –3.66), perceiving fewer positive aspects of caregiving (–3.09; 95% CI:–3.94, –2.25), high caregiving stress (–7.88; 95% CI:–8.71, –7.06), and high role captivity (–6.41; 95% CI:–7.27, –5.54). When these four measures were combined within the same model, only positive aspects of caregiving and caregiving stress retained independent associations with well-being and SwL.ConclusionBoth positive and negative dimensions of caregiving were associated with caregiver well-being and SwL. Psychological therapies and interventions need to consider not only the negative aspects of caregiving but also positive caregiving experiences and their implications for caregiver well-being and SwL.     

The presence of a caregiver is associated with patient outcomes in patients with Parkinson's disease and atypical parkinsonisms

IntroductionApproximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population.MethodsSecondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale.ResultsOf 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms.ConclusionFindings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.     

Cognitive impairment in Parkinson's disease: impact on quality of life of carers

Background

The quality of life (QoL) of informal caregivers of people with Parkinson's disease (PD) (PwP) can be affected by the caring role. Because of cognitive symptoms and diminished activities of daily living, in addition to the management of motor symptoms, carers of PwP and cognitive impairment may experience increased levels of burden and poorer QoL compared with carers of PwP without cognitive impairment. This study aimed to investigate the impact of cognitive impairment in PD upon QoL of carers.

Methods

Approximately 36 months after diagnosis, 66 dyadic couples of PwP and carers completed assessments. PwP completed a schedule of neuropsychological assessments and QoL measures; carers of PwP completed demographic questionnaires and assessments of QoL. Factor scores of attention, memory/executive function and global cognition, as derived by principal component analysis, were used to evaluate cognitive domains.

Results

Hierarchical regression analysis found lower Montreal Cognitive Assessment was a significant independent predictor of poorer carer QoL, in addition to number of hours spent caregiving, carer depression and PD motor severity. Attentional deficits accounted for the largest proportion of variance of carer QoL. Carers of PwP and dementia (n = 9) had significantly poorer QoL scores compared with PwP and mild cognitive impairment (n = 18) or normal cognition (n = 39) carers (p < 0.01).

Conclusions

Attentional deficits were the strongest predictor of carer QoL compared with other cognitive predictors. Carers for those with PD dementia reported the poorest QoL. Interventions such as respite or cognitive behavioural therapy to improve mood and self‐efficacy in carers may improve carer QoL. © 2016 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons, Ltd.     

Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment

BackgroundPediatric obsessive-compulsive disorder (OCD) is associated with deleterious familial effects; caregivers are often enmeshed in the disorder and can experience considerable burden and decreased quality of life (QoL). Consequently, this study examined burden and QoL in caregivers of youth with OCD enrolled in an intensive outpatient or partial hospitalization program.MethodThe relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads completed clinician- and self-rated questionnaires.ResultsComponents of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Aspects of caregiver burden correlated with child OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL.ConclusionUltimately, elucidating factors associated with increased caregiver burden and poorer QoL is pertinent for identifying at-risk families and developing targeted interventions.     

Caregiver distress associated with neuropsychiatric problems in patients with early Parkinson’s disease: the Norwegian ParkWest study

Leiknes I, Tysnes O‐B, Aarsland D, Larsen JP. Caregiver distress associated with neuropsychiatric problems in patients with early Parkinson’s disease: the Norwegian ParkWest study.
Acta Neurol Scand: 2010: 122: 418–424.
© 2010 The Authors Journal compilation © 2010 Blackwell Munksgaard. Objectives – We investigated caregiver distress associated with neuropsychiatric problems in patients with newly diagnosed Parkinson’s disease (PD). Materials and methods – Persons who were next of kins of 198 patients and 168 healthy individuals completed the Neuropsychiatric Inventory Caregiver Distress Scale. Results – Even at the time of diagnosis PD has a considerable impact on the next of kins’ experience of distress. Nearly 50% reported distress, significantly more than in the control group, and more than one‐quarter reported moderate severe distress. Except the more rarely reported neuropsychiatric symptoms, apathy was the symptom that most frequently caused caregiver distress in PD patient’s next of kin (94.5%), followed by depression (88.2%), anxiety (86.2%) and irritability (83.3%). Conclusions – The study underlines the importance of focusing on neuropsychiatric aspects in patients and associated caregiver distress even in early PD management.     

Caring for an individual with mild cognitive impairment: a qualitative perspective of health-related quality of life from caregivers

ABSTRACT

Objectives: Little is known regarding the effect that caring for an individual with Mild Cognitive Impairment (MCI) has on health-related quality of life (HRQOL). We sought to identify the most important aspects of HRQOL related to caring for an individual with MCI.

Methods: Six focus groups were conducted with caregivers of individuals with MCI (n = 32). Qualitative frequency analysis was used to analyze the data.

Results: Findings indicated that caregivers most frequently discussed social health, including changes in social roles and an increased need for social support (51.2% of the total discussion). This was followed by mental health concerns (37.9%) centering on anger/frustration, and a need for patience in the caregiving role, as well as caregiver-specific anxiety. Other topics included physical health (10.0%; including the impact that stress and burden have on medical heath), and caregivers’ cognitive health (0.9%; including memory problems in relation to caregiver strain, sleep disruption, and cognitive fatigue).

Conclusions: Findings illustrate the multiple domains of HRQOL that are affected in individuals providing care for someone with MCI. Moreover, the findings highlight the need for extending support services to MCI caregivers, a group that is typically not offered support services due to the ‘less severe’ nature of an MCI diagnosis.     

Caregivers of patients with amyotrophic lateral sclerosis: investigating quality of life,caregiver burden,service engagement,and patient survival

Few studies in amyotrophic lateral sclerosis (ALS) have profiled disease-specific features of the condition in conjunction with assessment of caregivers’ burden, distress, quality of life, and investigated patient survival. Eighty-four ALS patients and their primary caregivers were enrolled. Patients completed ALS-specific measures of physical and cognitive function, while caregivers completed measures of anxiety, depression, caregiver burden, and quality of life. Patient-caregiver dyads were interviewed about their health-service utilisation. Survival data were obtained through the Irish register for ALS. Participants were dichotomised into low/high groups according to the severity of self-reported caregiver burden, based on statistically derived cut-off scores. High-burdened caregivers (n = 43) did not significantly differ from low-burdened caregivers (n = 41) with respect to disease-specific characteristics, i.e., ALSFRS-R, bulbar- or spinal-onset ALS, disease duration, or survival data. However, significant differences were reported on subjective measures of anxiety (p < 0.000), depression (p < 0.001), distress (p < 0.000), and quality of life (p < 0.000). These data demonstrate the limited impact of ALS patient-related variables, i.e., ALSFRS-R and onset, on caregiver burden in ALS, and identify the importance of the psychological composition of caregivers. This study suggests that the subjective experience of individual caregivers is an important factor influencing the severity of experienced caregiver burden.     

Coping style and health-related quality of life in caregivers of epilepsy patients

Epilepsy has a significant impact on health-related quality of life (HRQOL) of patients and personal coping style is an important determinant. Less is known about home caregivers. This study investigates HRQOL and coping style of both patients and caregivers and their interaction. Epilepsy patients attending the outpatient clinic of the University Medical Centre in Utrecht and their caregivers were sent EQ5D and RAND-36 questionnaires. The Utrecht Coping List was used to chart personal coping styles. HRQOL scores of patients and caregivers were compared to the general Dutch population. The association between patient and caregiver HRQOL scores was calculated. A stepwise backward multivariate linear regression analysis was used to explain variances in caregiver HRQOL. Eighty-six couples (49%) returned all questionnaires. Caregiver HRQOL scores were comparable to the general Dutch population (EQ5D: 0.88-0.88; p?=?0.90, RAND-36 MCS: -2 points; p?=?0.16), while patients HRQOL scores were lower (EQ5D: 0.79; p?相似文献   

Cyclophosphamide as second-line therapy in multiple sclerosis: benefits and risks

Aim of this study was to determine the predictors of caregiver burden among spouse caregivers of patients with Parkinson’s disease (PD). Forty consecutive PD patients and their spouse caregivers were included. Patients were assessed using the Unified Parkinson’s Disease Rating Scale (UPDRS), the Hoehn and Yahr scale (HY), the Mini-Mental State Examination (MMSE), the Neuropsychiatric Inventory (NPI), and the Geriatric Depression Scale (GDS). Stress and depressive symptoms among caregivers were evaluated using the Caregiver Burden Inventory (CBI) scale and the GDS. Only PD severity (HY) and mental symptoms (NPI) were significantly associated to caregiver distress. A major attention must be given to the early identification of factors generating stress in caregivers in order to improve caregiver quality of life and patient’s care. M. D’Amelio and V. Terruso equally contributed to the study.     

Caregiver strain in Parkinson's disease: National Parkinson Foundation Quality Initiative Study

BackgroundNational Parkinson Foundation Quality Improvement Initiatives (NPF-QII) is the first large scale data-driven initiative in Parkinson's disease (PD) aimed at identifying variables predicting best care models and outcomes.ObjectiveTo determine what measures of PD disability, demographics, and patient quality of life are associated with caregiver strain among caregivers of patients with PD.MethodsAll PD patients at 18 participating sites are eligible for enrollment into the NPF-QII registry. Dataset includes multidimensional measures of disease severity, health care utilization, PD quality of life questionnaire-39 (PDQ-39) and multidimensional caregiver strain inventory (MCSI). A univariate as well as an adjusted analysis was performed to examine the relationship between caregiver strain and variables of PD disability.ResultsThe single best factor associated with high caregiver strain was the PDQ-39 total score (c-statistic of continuous variable = 0.792, p < 0.001) followed by the PDQ-mobility subscore (c = 0.776, p < 0.001). PDQ-39 ≥ 47 was the optimal cut off associated with a high caregiver strain with a sensitivity = 83% and specificity = 64%. A multiple logistic regression model with stepwise selection showed that in addition to PDQ-39 ≥ 47 (OR and 95% confidence interval = 5.1 (3.2, 8.2), the following subject characteristics were associated with high caregiver strain: (model p < 0.001, c = 0.838): Hoehn and Yahr stage >3 (2.0 (1.3, 3.1)), presence of concomitant medications such as antidepressants (2.1 (1.5, 3.1)) and antipsychotics (2.5 (1.5, 4.2)), social worker visits (1.6 (1.2, 2.1)), male gender (2.3 (1.5, 3.5)), and decreased verbal fluency (0.95 (0.92, 0.98)).ConclusionsThere is a high prevalence of caregiver strain in PD. PDQ-39 total score has the strongest association with high levels of caregiver strain. These results could guide clinicians in the assessment of caregivers at risk.     

Correlates of health-related quality of life and the perception of its importance in caregivers of children with autism

This study aims to investigate the correlates of health-related quality of life (HRQOL) and perceptions of the importance of each HRQOL domain in caregivers of children with autism. Eighty-two caregivers completed the World Health Organization Quality of Life and Parenting Stress Index Short Form to respectively measure the caregivers’ HRQOL and parenting stress. The Childhood Autism Rating Scale and the Strength and Difficulties Questionnaire were used to respectively assess severity of autism and children's behavior problems. Results revealed that severity of autism, behavior problems, and parenting stress individually had low to moderate associations with HRQOL. However, all variables considered together, only parental distress (parent-related stress) significantly contributed to the four HRQOL domains. In addition, the physical domain was the most important HRQOL domain to caregivers, and environmental domain, the least. Knowledge of the correlates of HRQOL and the importance of each HRQOL domain could serve as guides for clinicians to improve the HRQOL of caregivers of children with autism by targeting parental distress and focusing on the HRQOL domains perceived as most important by caregivers.     

Parent-reported sleep problems in school-aged children with fetal alcohol spectrum disorder: association with child behaviour,caregiver, and family functioning

Objective/backgroundSleep problems are a common clinically reported area of concern for children and adolescents with fetal alcohol spectrum disorder (FASD). However, limited empirical research has been undertaken investigating sleep problems for children with FASD. The current study aimed to examine the associations between parent-reported sleep problems in children with FASD and child behaviour, caregiver mental health and health-related quality of life and family functioning.Participants163 caregivers of children diagnosed with FASD aged 5–17 years were included in the current study.MethodCross-sectional online survey that collected information pertaining to child sleep problems (difficulty falling asleep, difficulty staying asleep and/or frequent waking during the night and waking early in the morning) and standardised caregiver reported measures of child behaviour, caregiver mental wellbeing, caregiver health-related quality of life, and family functioning.ResultsSleep problems were common, affecting 65.6% (n = 107) of participants. Difficulty falling asleep (56.4%) was the most common sleep problem encountered, followed by difficulty staying asleep (44.8%) and waking early (29.4%). Sleep problems were associated with increased rates of child behaviour problems and caregiver anxiety and negative impacts on caregiver and family quality of life.ConclusionSleep problems in children and adolescents with FASD are common and associated with poorer child, caregiver and family outcomes. Future research needs to determine whether effective identification and management of sleep problems can reduce adverse outcomes.     

Burden and health-related quality of life among caregivers of Brazilian Parkinson's disease patients

PurposeTo analyze the main determinants of burden and health-related quality-of-life (HRQoL) in caregivers of Brazilian Parkinson's disease (PD) patients.MethodsCaregivers answered Hospital Anxiety and Depression Scale (HADS), Zarit caregiver burden interview (ZCBI) and EQ-5D, a generic measure of HRQoL. Patients were assessed with Hoehn and Yahr (H&Y) staging; Scales for Outcomes in Parkinson's disease (SCOPA) Motor, Cognition, Psychosocial and Sleep scales; Non-Motor Symptoms Scale; HADS; Clinical Impression of Severity Index; EQ-5D and Parkinson's Psychosis Rating Scale.Results50 Caregiver-patient dyads were assessed. Caregivers were significantly younger (55.7 vs. 65.4 years), p < 0.0001. Eighty-eight per cent of caregivers were females, and 78% were spouses. The proportion of caregivers who scored ≥11 points in the HADS-anxiety or HADS-depression subscales was 12% and 14% respectively. ZCBI mean score was 20.2 (SD 12.8), and significantly worsened as severity of disease, based on H&Y, increased (H&Y 1–2: 16.4, H&Y 3–5: 24.6; p = 0.02). Caregiver's EQ-5D Index and visual analog scale mean scores were 0.7 (SD: 0.26) and 76.3 (SD: 16.2) respectively. Weak to moderate association (r = ?0.27 to ?0.39) between EQ-5D Index and ZBCI mean scores was observed in caregivers. Patient outcomes (sleep disorders and behavioral-psychotic symptoms) and caregiver outcomes (mood, time of caregiving) were independent predictors of caregiver burden (adjusted R² = 0.55; p < 0.0001) in the multivariate regression analysis. Caregiver's mood status was a significant determinant of caregiver's HRQoL, as measured by the EQ-5D Index (adjusted R² = 0.28; p = 0.006).ConclusionsPatients' psychiatric and sleep disorders and caregiver's mood significantly influenced burden and HRQoL in Brazilian PD caregivers.     

Patient and caregiver quality of life in psychogenic non-epileptic seizures compared to epileptic seizures

PurposeLittle is known about the effect of psychogenic non epileptic seizures (PNES) to caregiver quality of life (QOL), particularly as it compares to epileptic seizures (ES). We sought to characterize this effect and identify its determinants.MethodsThe study population comprised of 126 ES and 33 PNES patients who underwent video EEG monitoring along with 48 and 18 caregivers respectively who accompanied them to their investigations. Patients completed questionnaires providing demographic, disease-related, cognitive, psychiatric, sleep and QOL information on admission, prior to their diagnosis being clarified. Their caregivers completed questionnaires providing demographic, disease burden and generic QOL information. Paraclinical data were also gathered. Regression analysis was used to identify patient and caregiver related determinants of patient and caregiver QOL.ResultsQOL scores were significantly worse for PNES than ES patients and were mainly linked to depression levels. PNES and ES caregivers had comparable demographic characteristics and QOL scores. ES caregiver QOL was better in employed caregivers with lower burden scores for the physical component summary (PCS) and worse in female caregivers of depressed patients with higher burden scores for the mental component summary (MCS). Caregiver burden score was the strongest correlate of PNES caregiver MCS QOL score.ConclusionCaregiver QOL in PNES does not differ from caregiver QOL in ES, while patient QOL is worse in PNES. Caregiver burden emerges as a consistent correlate of caregiver QOL both in ES and PNES. These findings advocate for consideration of caregiver burden and QOL in PNES in clinical practice and for future research paradigms.     

Incentive-driven decision-making networks in de novo and drug-treated Parkinson's disease patients with impulsive-compulsive behaviors: A systematic review of neuroimaging studies

BackgroundIn Parkinson's disease (PD), impulsive-compulsive behaviors (ICBs) may develop as side-effect of dopaminergic medications. Abnormal incentive-driven decision-making, which is supported by the cognitive control and motivation interaction, may represent an ICBs signature. This systematic review explored whether structural and/or functional brain differences between PD patients with vs without ICBs encompass incentive-driven decision-making networks.MethodsStructural and functional neuroimaging studies comparing PD patients with and without ICBs, either de novo or medicated, were included.ResultsThirty articles were identified. No consistent evidence of structural alteration both in de novo and medicated PD patients were found. Differences in connectivity within the default mode, the salience and the central executive networks predate ICBs development and remain stable once ICBs are fully developed. Medicated PD patients with ICBs show increased metabolism and cerebral blood flow in orbitofrontal and cingulate cortices, ventral striatum, amygdala, insula, temporal and supramarginal gyri. Abnormal ventral striatum connectivity with anterior cingulate cortex and limbic structures was reported in PD patients with ICBs.DiscussionFunctional brain signatures of ICBs in PD encompass areas involved in cognitive control and motivational encoding networks of the incentive-driven decision-making. Functional alterations predating ICBs may be related to abnormal synaptic plasticity in these networks.     

Comparison of caregiver strain in Parkinson's disease between Yamagata,Japan, and Maryland,The United States

BackgroundJapan and the United States (US) have different cultures of caregiving including differences in family structure and social programs that may influence caregiver strain. Differences in caregiver strain between regions in Japan and in the US have not been investigated in patient–spouse dyads in PD.ObjectivesTo compare caregiver strain in spouses of PD patients between Yamagata, Japan and Maryland, US. Correlations between caregiver strain and patient/spousal variables are also examined.MethodsIn Yamagata and Maryland, spouses of patients with PD completed questionnaires assessing caregiver strain. Patients and spouses completed scales assessing mental health, and medical co-morbidity. PD severity and disability were assessed with the Unified Parkinson's Disease Rating Scale and the Schwab and England Activities of Daily Living Scale. Results in the two regions were compared with Chi-square and Student's t-tests. Relationships between caregiver strain and patient/spousal variables were analyzed with univariate correlations and multivariate regression.Results178 Spouse–patient pairs were assessed. The level of caregiver strain in PD did not differ between Yamagata, Japan and Maryland, US despite differences in demographics and social support programs in the two regions. Yamagata spouses reported physical, time and financial constraints, while Maryland spouses reported more emotional distress. In both regions, spousal depression was a significant contributor to caregiver strain.ConclusionDifferent approaches to reduce caregiver strain will likely be necessary in Yamagata and Maryland since the contributing factors to caregiver strain are influenced by differences in culture and social supports in each country.     

Mutuality and specificity of mental disorders in advanced cancer patients and caregivers

BACKGROUND: We sought to determine mutuality and specificity in rates of mental disorders between advanced cancer patients and their caregivers. METHOD: Data from 168 non-genetically related patient-caregiver dyads participating in the multi-site Coping with Cancer (CWC) study were included in this analysis. Multivariate logistic regression analyses were conducted to examine associations between diagnoses of a psychiatric disorder in patients with diagnoses of psychiatric disorders in caregivers, and vice versa, controlling for confounders. RESULTS: When patients met criteria for any psychiatric diagnosis, then caregivers were 7.9 times (P < 0.0001) more likely to meet criteria for any psychiatric diagnosis, and vice versa. Caregiver Panic Disorder (PD) diagnosis was associated with patient Generalized Anxiety Disorder (GAD). Patient GAD was also associated with caregiver PD. Finally, patient PD was associated with caregiver GAD and caregiver Post-Traumatic Stress Disorder (PTSD). CONCLUSIONS: To our knowledge, this is the first study that demonstrates the mutuality of psychiatric disorders in both advanced cancer patients and their informal caregivers. Specifically, the presence of anxiety disorders in one partner (either caregiver or patient) was associated with a greater likelihood of anxiety disorders in the other. Results suggest that psychiatric distress should be assessed in both patients and their caregivers, and that mental illness in one should raise concern about the possibility of a psychiatric disorder in the other. Results also suggest that targeted interventions to address shared fears and concerns of patients and caregivers might reduce anxiety in the end phases of the patient's illness.     

Effect of deep brain stimulation on caregivers of patients with Parkinson's disease: A systematic review

BackgroundCaregivers of patients with Parkinson's Disease (PD) often provide important support in the pre- and postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient-functioning may affect caregiver wellbeing and impact the support system. Factors influencing caregiver-wellbeing under these circumstances are incompletely known.Objectiveto systematically review studies of sufficient methodological quality on the impact of DBS on caregivers of PD patients.Methodsusing PRISMA guidelines, major databases were searched up to May 2020. Five subcategories were identified: Caregiver burden, Caregiver cognitive and psychiatric functioning, Caregiver Quality of Life (QoL), Marital Satisfaction/Conflicts, and Caregiver Satisfaction. Quality was assessed using an in-house checklist.Results293 studies were identified; 12 were ultimately included. Caregiver burden, psychiatric and cognitive functioning and QoL remained relatively unchanged. Results on marital satisfaction/conflicts were contrasting: an increase in marital conflicts despite improved relationship quality scores DBS. Caregiver satisfaction with surgery was low with 50–58% of caregivers being disappointed with DBS outcomes. Concerning caregiver related factors: a higher preoperative caregiver QoL, younger age, lower scores on psychiatric rating scales, and more favourable preoperative relationship quality scores, were associated with better caregiver wellbeing. A favourable patient-profile includes younger age and age-at-onset, shorter disease duration, lower medication requirements, and lower scores on psychiatric rating scales.ConclusionAlthough most patient- and caregiver-related subdomains remained unchanged after DBS, dissatisfaction among caregivers and marital problems may constitute a large risk for a well-functioning patient-caregiver dyad. Early recognition of potential problem situations may improve post-DBS care for both patients and caregivers.     

Association between incongruence about survivor function and outcomes among stroke survivors and family caregivers

Background: Stroke survivors and family caregivers often have incongruent appraisals of survivor cognitive, physical, and psychosocial function. Partner incongruence contributes to poor outcomes for survivors and caregivers.

Objectives: This study explored whether partner incongruence: (1) differs by function domain; (2) increases or decreases over time, and; (3) is associated with self-rated health, distress, stress, and depressive symptoms.

Methods: Structured surveys were administered to 32 survivors and caregivers at approximately 3 (enrollment) and 7 months (follow-up) post-stroke. Paired t-tests were used to examine partners’ ratings of survivor function at enrollment and follow-up, and changes in incongruence over time. Partial correlations were used to examine the association between incongruence at enrollment and outcomes at follow-up.

Results: Survivors consistently rated their own memory and thinking as significantly better than caregivers rated their memory and thinking. At follow-up, survivors rated their own communication as significantly better than caregivers rated their communication. Incongruence about survivor memory and thinking was associated with survivor distress, as well as caregiver distress, stress, and depressive symptoms. Incongruence about survivor ADLs was associated with caregiver stress and depressive symptoms. Incongruence about survivor social participation was associated with caregiver distress.

Conclusions: Findings from this study suggest that survivors and caregivers often have incongruent appraisals of survivor function, that incongruence does not improve naturally over time, and that incongruence may be detrimental for survivor and caregiver outcomes. Further research should be directed at the mitigation of incongruence and strategies to improve outcomes for both survivors and family caregivers.     

Depression in individuals with chronic obstructive pulmonary disease and their informal caregivers

Objective: Individuals with chronic obstructive pulmonary disease (COPD) and their caregivers are at high risk for developing depression. Depression can adversely affect the quality of life of patients and caregivers; however, studies in COPD have largely examined predictors of patient and caregiver depression in isolation. This dyadic study examined individual-level predictors of patient and caregiver depression in COPD (i.e. actor effects) as well as how dyad members effect each other's depression (i.e. partner effects).

Methods: Survey data were collected from 89 patient–caregiver dyads that were enrolled in a multi-site cohort study.

Results: Participants were predominantly women (61% of patients and 76% of caregivers) and racial/ethnic minorities (65% of patients and 63% of caregivers). Based on PHQ9 cutoffs, 30% of patients and 20% of caregivers had mild depression; 30% of patients and 8% of caregivers had moderate to severe depression. Multilevel models with the dyad as the unit of analysis showed that less frequent patient self-management, higher levels of caregiver burden, and being in poorer health were associated with higher levels of depression for both dyad members. Higher levels of depression in a partner were also associated with higher levels of depression for women, regardless of whether women were patients or caregivers.

Conclusion: Findings suggest that similar factors predict patient and caregiver depression in COPD and that women are at increased risk for developing depression when their partners are depressed. Dyadic psychosocial interventions that target patients and their caregivers may thus be beneficial in terms of addressing depression in this this vulnerable population.