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1.
ObjectivesMild cognitive impairment (MCI) is common, affecting 10%–35% of people over 65, and poses unique challenges for patients and their caregivers. Comparatively little research has examined caregiver burden in this population, with longitudinal research, in particular, lacking. We examined caregiver burden in a sample of people with MCI over 3 years.DesignThree-year observational study.SettingNine memory clinics in Australia.ParticipantsOne-hundred-and-eighty-five people with MCI and their caregivers.MeasurementsMeasures of caregiver burden, cognition, function, neuropsychiatric symptoms, driving status, and medication use were completed with patients and their caregivers at regular intervals over a 3-year period.ResultsBetween 21.1% and 29.5% of caregivers reported a clinically significant level of burden over the study. Patients’ higher levels of neuropsychiatric symptoms, lower functional ability, and lack of driving ability, and caregivers’ employment were associated with greater caregiver burden over time. Caregiver burden did not increase over time when controlling for patient and caregiver characteristics.ConclusionsHigh levels of caregiver burden are present in a significant proportion of caregivers of people with MCI. Clinical characteristics of patients – including severity of neuropsychiatric symptoms and functional impairment – and the employment status of caregivers predict burden. Such characteristics may help identify caregivers at greater risk of burden to target for intervention.  相似文献   

2.
Background and aims: Caregivers of individuals with neurodegenerative diseases, including frontotemporal dementia (FTD), Lewy body dementia (DLB), and Alzheimer's disease (AD), experience high levels of psychological and physical stress, likely due to behavioral and psychological symptoms of dementia (BPSD). This study is the first to simultaneously evaluate the effects of BPSD on caregiver burden in these three types of dementia.

Method: A total of 214 dementia patients, including probable FTD (n = 82), DLB (n = 22), and AD (n = 110), as well as their primary caregivers, were assessed using psychological inventories and cognitive evaluation. The FTD group was further divided into the three established clinical variants: behavioral variant frontotemporal dementia (bvFTD, n = 51), non-fluent variant primary progressive aphasia (nfvPPA, n = 15), and semantic variant primary progressive aphasia (svPPA, n = 16). Cognitive impairment and neuropsychiatric symptoms were assessed using the Mini Mental State Examination, Montreal Cognitive Assessment, Clock Drawing Test, and Neuropsychiatric Inventory (NPI), respectively. Caregiver burden was assessed using the Zarit Burden Inventory (ZBI).

Results: FTD patients had higher NPI and ZBI scores than DLB and AD patients, whose scores were similar. Logistic regression analysis revealed that the factors influencing caregiver burden for each group were: FTD: total NPI scores, agitation, and aberrant motor behavior; bvFTD: total NPI scores; DLB: total NPI scores; and AD: total NPI scores, onset age, apathy, and ADL. Caregivers of bvFTD patients had the highest levels of burden, which were significantly greater than for caregivers of nfvPPA, svPPA, DLB, and AD patients.

Conclusion: BPSD was highly correlated with emotional burden in caregivers of FTD, DLB, and AD patients. The highest burden was observed in bvFTD caregivers.  相似文献   


3.
《Seizure》2014,23(1):47-54
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.  相似文献   

4.
This study investigated the social cognitive functioning of patients with frontal lobe epilepsy (FLE), using a range of procedures that have shown impairments in patients following focal prefrontal brain lesions. Fourteen participants with FLE were compared with 14 healthy controls on story tests of theory of mind (ToM), faux pas appreciation, mental and physical state cartoon humor appreciation, facial emotional recognition, and the ability to perceive eye gaze expression. They were not impaired on story tests of ToM and showed only a trend toward impairment on a test of faux pas appreciation. They were impaired on humor appreciation, with both mental and physical state cartoons, and on their recognition of facial emotion and perception of eye gaze expression. Hence the patients with FLE exhibited impairments on tests of social cognition following a distinct pattern, with relatively preserved ToM, but impaired humor appreciation and ability to detect emotional expression.  相似文献   

5.
Objectives: We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers.

Methods: Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted.

Results: Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p?p?p?r?=??2.97). Presence of depression (p?r?=?0.381) was positively correlated and family caregiver role was negatively correlated (p?r?=??0.208) with caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers.

Conclusions: The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.  相似文献   

6.
ABSTRACT

Objectives: Current research suggests that dementia care management (DCM) can decrease burden and associated health impairments of caregivers. The objective of this secondary analysis is to investigate the impact of DCM on multifaceted caregivers’ burden dimensions by differentiating between objective and subjective burden.

Methods: A sample of n = 317 dyads of caregivers and community-dwelling people with dementia (PwD) participated in a general practitioner-based, cluster-randomized intervention trial (Identifier:NCT01401582) with two arms and comprehensive data assessment at baseline and 12-month follow-up. Data provided by the caregiver included an inventory with 88 items in 20 different dimensions.

Results: Caregivers in the intervention ‘DCM’ group showed decreased caregiver burden, especially in caregivers’ objective burden due to caring (i.e. emotional support), caregivers’ subjective burden due to behavior change (i.e. cognition, aggression and resistance, depression, late symptoms) and caregivers’ subjective burden due to perceived conflicts between needs and responsibilities to care (i.e. financial losses) compared to caregivers in the control ‘care as usual’ group, which showed significant increased caregiver burden after 12 months.

Conclusion: Our findings support evidence for the effectiveness of DCM to lower family dementia caregivers' burden in multifaceted dimensions.  相似文献   

7.
Objectives: Caregiving for people with neurodegenerative disease (e.g. Alzheimer's disease (AD); frontotemporal dementia (FTD)) is provided primarily by the family care system. Caregiving is taxing and much of the caregiving research is guided by a stress/adaptation theoretical perspective. Within this theoretical model, the role of spirituality in rendering meaning to the caregiver role remains unexplored. We conducted a qualitative analysis of expressions of spirituality and its meaningfulness during the caregiving journey within the context of an online video conferencing support group intervention program.Methods: Eighteen AD and six FTD caregivers participated in the Caring for Others evidence-based program consisting of 10 weekly virtual online support group sessions facilitated by experienced gerontological social workers.Results: Content analysis of the video-recorded group interactions yielded recurrent themes of caregivers’ spiritual reflections and their associations with managing caregiver stress responses.Conclusion: The findings inform professional observations of the importance of spiritual beliefs in understanding how caregivers ascribe both positive and negative meanings to critical life events and their management.  相似文献   

8.
Objective: Stroke does not only affect the physical state of patients but also the emotional state of their relatives, most effectively their caregivers. The study aims to examine the mood of caregivers experienced with care for patients with stroke who are highly dependent on the assistance and also to establish the relationship between the emotional state of caregivers and the severity of disability of the patients.

Methods: This study contained a total of 76 patients with sufficient cognitive functions and severe physical disabilities with hemiplegia caused by a cerebrovascular accident and their caregivers and 94 controls. The functional state of patients was assessed by the Barthel Index (BI). Furthermore, emotional state of the caregivers was assessed by the Hospital Anxiety and Depression Scale (HADS) and their life quality was assessed by the SF36 Health Survey.

Results: The mean anxiety (9.73 ± 4.88) and depression rates (9.81 ± 5.05) in the caregivers were significantly higher than those in controls (p<0.001, respectively). Significant impairments were observed in both their mental and physical health. Regression analysis also showed a significant negative correlation between the BI scores and the HADS scores.

Conclusion: Caregivers had an impaired emotional state and the level of their anxiety was associated with the severity of functional disability of the patients. Therefore, the support provided to the caregiver might be influential on the functional recovery of the patients.  相似文献   

9.
Aim: Frontotemporal dementia (FTD) is a degenerative dementia in which primary degeneration of the frontal region of the brain occurs. Because of the behavioral symptoms, the care of FTD patients has numerous problems. However, little has been clarified with regard to the actual care situation, especially in a family care setting. The aim of the present study was to elucidate the caregiver burden and problems associated with the care of FTD patients in home care settings. Methods: Two patients were diagnosed with FTD on the basis of the Lund and Manchester group criteria at the clinic for outpatients of a hospital located in Aichi Prefecture, Japan. Semi‐structured interviews were conducted with the family caregivers of the FTD patients. The content of the interview covered the patient course and any problems encountered in the home setting regarding activities of daily living (ADL), behavioral disorders and cognitive function. Results: These FTD patients had abnormal eating behaviors such as cramming of food into one's mouth and the abnormal manner of eating. They had to be fed bit by bit with total caregiver assistance. They were also overactive, restless and distractable, which subsequently caused problems with ADL‐assistance including extreme uncooperativeness toward their caregivers. Other behavioral symptoms associated with FTD, e.g., stereotypic behavior, distractability and high impulsivity, were also considerably burdening to the caregivers. Conclusion: The behavioral symptoms peculiar to FTD pose huge problems and heavy burden to the family caregiver. More resources should be allocated to specific needs of the FTD patients and their families.  相似文献   

10.
Background: Caregivers of people with mental illnesses often experience a wide range of burdens. Although many studies have confirmed burdens among family caregivers of mentally ill relatives in general, specific knowledge regarding the concrete everyday hassle and existential sorrows from the caregiver? subjective reasoning perspective is lacking. Furthermore, there is little evidence on the possible different effects of affective disorders and schizophrenia on the quality of burden; this is also true with regard to the role of cultural traditions and lay beliefs. Aims: The aim of this study was to explore the specific burdens experienced by caregivers of patients with schizophrenia and affective disorders. Methods: A qualitative study was conducted by semi-structured interviews with 45 caregivers of patients with schizophrenia and affective disorders. Data were analysed by qualitative content analysis. Results: Eleven encumbering themes resulted from the interviews including incertitude, unawareness, emotional burden, stigma and blame, financial burden, physical burden, restriction in routine, disruption in routine, dissatisfaction with family, relatives, and acquaintances, troubles with patients’ adherence to medication, and problems with health services and governmental support. Conclusions: Caring for a person with mental illness affects caregivers emotionally, financially, physically, and it elicits some restrictions in their routine (daily hassles). Finally, it causes conflicts in family relationships. Despite some differences regarding perceived burden among caregivers of schizophrenia and affective disorders, a common pattern of burden could be identified. Thus, authorities should provide adequate financial, educational, and psychosocial supports for caregivers of mental illnesses.  相似文献   

11.
Background and purposeStroke may impose a severe burden on both the patients and their caregivers. Although there is substantial literature relating to the adverse impact of stroke on patients, considerably less is known about its impact on their caregivers. The aim of this study was to analyse predictive factors of the overall burden in caregivers of stroke victims and to verify the structural model of burden, built on the basis of theoretical and empirical assumptions.Material and methodsOne hundred and fifty pairs of patients and their caregivers were evaluated. The Caregiver Burden Scale (CB), Hospital Anxiety and Depression Scale (HADS), Sense of Coherence Scale (SOC), Social Support Scale, Geriatric Depression Scale, Barthel Index and Scandinavian Stroke Scale were all used to evaluate caregiver burden and the characteristics of patients and caregivers.ResultsThe caregivers experienced a moderate burden (mean CB = 2.08) and emotional distress (mean total HADS = 14.1). Path analysis showed that higher burden was associated with a lower SOC score, higher emotional distress, and lower patient's functional status. Higher emotional distress, in turn, was associated with lower SOC and lower patient's functional status. These results show that the burden and the degree of emotional disturbance are two distinct negative consequences of caregiving.ConclusionsThe negative consequences of caregiving depend mainly on the caregiver's intra-psychic factors and the patient's disability. Professional interventions should be targeted at enhancing caregivers’ ability to cope with stress, improving their caregiving skills and reducing the physical dependence of patients.  相似文献   

12.
Frontotemporal dementia (FTD) is the second most prevalent dementia after Alzheimer's disease (AD). We compared 29 FTD and 90 AD caregivers with respect to burden, health-related quality of life (HQoL) and coping. FTD caregivers were more burdened than AD caregivers, and caregivers of patients who were demented for shorter duration had lower HQoL. We furthermore compared the 29 FTD caregivers with 34 caregivers of institutionalized FTD patients to understand their specific caregiver issues. Caregivers of FTD patients institutionalized after shorter dementia duration were most burdened and affected in their HQoL. Overall, passive coping strategies were associated with increased burden and decreased HQoL. We recommend that FTD caregivers be offered more support than AD caregivers. Furthermore, we suggest that interventions target passive coping strategies.  相似文献   

13.
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.  相似文献   

14.
Background: Self-efficacy is the belief that one can perform a specific task or behaviour and is a modifiable attribute which has been shown to influence health behaviours. Few studies have examined the relationship between self-efficacy for dementia-related tasks and symptoms of burden and depression in caregivers.

Methods: Eighty four patient/caregiver dyads with Alzheimer's disease were recruited through a memory clinic. Patient function, cognition and neuropsychiatric symptoms were assessed together with caregiver burden, personality, depressive symptoms, coping strategies and self-efficacy for completing tasks related to dementia care.

Results: 33% (28) of caregivers reported significant depressive symptoms (CES-D?≥?10). In multivariate analyses, caregiver burden was predicted by self-efficacy for symptom management, neuroticism, patient function and neuropsychiatric symptoms while caregiver depression was predicted by self-efficacy for symptom management, caregiver educational level, neuroticism, emotion-focused coping, dysfunctional coping and patient function. In patients with moderate to severe impairment (MMSE?≤?20), self-efficacy for symptom management behaved as a mediator between patient neuropsychiatric symptoms and symptoms of burden and depression in caregivers.

Conclusions: Further longitudinal investigation is warranted to determine if self-efficacy might be usefully considered a target in future interventional studies to alleviate symptoms of burden and depression in Alzheimer's caregivers.  相似文献   


15.
Frontotemporal dementias are neurodegenerative disorders marked by mid-life onset and progressive changes in behavior, decision making, and/or language. In several subtypes of frontotemporal dementia (FTD), damage to regions of the frontal and temporal lobes that occurs early in the disease course critically impairs emotional processing, social cognition, and behavior. To date, there are no curative or disease-modifying treatments for FTD, nor any approved treatments for the loss of empathy, impaired social cognition, and behavior of patients with FTD. A growing body of research suggests that the neuropeptides oxytocin and vasopressin are important mediators of social behavior in humans and other animals. Here, we review the effects of oxytocin and vasopressin on social cognition and behavior and discuss the potential implications for these agents as novel treatments in FTD.  相似文献   

16.
Theory of Mind (ToM) is the ability to attribute independent mental states to self and others to explain and predict behavior. Impairment of ToM is well established in developmental pathologies. In neurological populations, investigation of ToM is still rare but data suggest that ToM impairment could contribute to behavioral and social disturbances. In addition to neurological signs, multiple sclerosis (MS) presents with disorders of cognition and behavior directly related to brain damage. The aim of this study was to assess ToM abilities and recognition of facial emotional expression in adults with MS. We compared 64 patients with relapsing MS and 30 matched healthy controls on three levels of ToM tasks, a facial emotion recognition task, and a neuropsychological assessment. MS patients performed significantly worse than controls in emotion recognition and all ToM tasks (p < .02). These deficits were not correlated with demographic variables or neuropsychological test performance. These findings underscore the importance of assessing ToM and facial recognition in MS, as dysfunction in these areas may impact upon social interaction and, thus, impair quality of life for both patients with MS and their families.  相似文献   

17.
Objectives of the study and backgroundSchizophrenia is a complex disease that affects 1% of the population. This disease has a considerable impact not only on patients' health and well-being but also on their surrounding environment. The costs of the disease's management remain large for individuals and society. While literature on the economic impact of schizophrenia is abundant, few studies have focused on its humanistic burden. This does not only concern patients, but also caregivers, relatives, neighbours and others in a patient's daily life. This burden appears through several dimensions, including treatment side effects and the impact on caregivers and features of the patient's environment. The aim of this review is to consider, compile and describe the humanistic burden of schizophrenia as documented in the literature.Materials and methodsWe conducted a literature review assessing the worldwide disease burden of schizophrenia, taking into account all humanistic burden topics. The search considered several databases, including Embase, Medline, Cochrane Library, The German Institute of Medical Documentation and Information (DIMDI) and the ISPOR conference websites.ResultsThe search identified 200 literature reviews, covering several dimensions of humanistic burden and documenting many issues. Main findings included the high death rates that may be explained by long-lasting negative health habits, disease- and treatment-related metabolic disorders, and consequent increased frequencies of cardiovascular diseases. Co-existing depression was found to have adverse consequence on the course of schizophrenia progression, morbidity and mortality. Cognitive impairment also adds to the burden of schizophrenia. Social impairment is worsened by underestimated stigmatisation and lack of corresponding awareness within the professional and social spheres. Finally, caregiver burden was found to be considerable.DiscussionHumanistic burden among patients with schizophrenia is substantial potentially impacted by co-morbid depressive symptoms, caregiver burden and cognitive impairment. Effects of treatment on humanistic burden in addition to economic burden need to be explored in future trials.  相似文献   

18.
ObjectivesThis study seeks to better understand caregivers’ experience of the support their loved ones, with disorders of consciousness, receive in a dedicated unit.MethodsThe focus here is on the qualitative component of a larger study that also includes a quantitative component. An inductive and iterative approach was prioritized, i.e., one similar to grounded theory; a thematic analysis was used to analyze 20 comprehensive semi-structured interviews.ResultsThree main themes emerged: the discovery of a new world by a patient's loved ones, i.e., the disorders of consciousness; the psychological and somatic impact on loved ones; and the relationships between family caregivers and professionals of the dedicated unit.DiscussionThe new living situation of people with disorders of consciousness requires caregivers to engage in an intense psychological process. First, this process is necessary to their understanding of the situation and its consequences. Second, it allows them to cope with the reorganization of the emotional and relational ties between the patient and the caregiver, and in the entire family dynamic. Lastly, healthcare professionals consider that caregivers are also the witnesses of the patient's earlier life, capable of linking the past and present, and often the interpreters of patients’ emotional reactions according to their former personality.ConclusionCaregivers are affected by the frailty and somatic dependence of their loved ones; and they also bear the history and psychological continuity of patients. Professionals must take this double burden into account, which helps explain families’ psychological exhaustion and their need for help. Understanding these phenomena is crucial for improving patient care in dedicated units.  相似文献   

19.
ObjectivesThis study seeks to better understand caregivers’ experience of the support their loved ones, with disorders of consciousness, receive in a dedicated unit.MethodsThe focus here is on the qualitative component of a larger study that also includes a quantitative component. An inductive and iterative approach was privileged, i.e., one similar to grounded theory; a thematic analysis was used to analyze 20 comprehensive semi-structured interviews.ResultsThree main themes emerged: the discovery of a new world by a patient's loved ones, i.e., the disorders of consciousness; the psychological and somatic impact on loved ones; and the relationships between family caregivers and professionals of the dedicated unit.DiscussionThe new living situation of people in an disorders of consciousness state of consciousness requires caregivers to engage in an intense psychological process. First, this is necessary to understand the situation and its consequences. Second, it allows them to cope with the reorganization of the emotional and relational ties between the patient and the caregiver, and in the entire family dynamic. Lastly, healthcare professionals consider that caregivers are also the witnesses of the patient's past life, capable of linking the past and present, and often the interpreters of patients’ emotional reactions according to their former personality.ConclusionCaregivers are affected by the frailty and somatic dependence of their loved ones, and they also bear the history and psychological continuity of patients. Professionals must take into account this double burden, which helps explain families’ psychological exhaustion and their need for help. Understanding these phenomena is crucial for improving patient care in dedicated units.  相似文献   

20.
Objectives: This study aimed (1) to determine whether octogenarian and centenarian care recipients’ self-report on physical, social, and emotional status are different from caregivers’ reports, (2) to assess associations between octogenarian and centenarian care recipients’ poor physical, social, and emotional status and caregiver burden, and (3) to determine which report, the care recipients’ self-report or caregivers’ report, about the participants’ physical and emotional status predicted more accurately levels of caregiver burden.

Method: Self-ratings and caregiver informant ratings were obtained from 309 participants of the Georgia Centenarian Study. Care recipients’ health, negative affect, and loneliness were reported by both the caregivers and care recipients for the analyses. Differences between care recipients’ and caregivers’ reports were assessed by t-test. Blockwise multiple regression analysis was computed to assess predictors of caregiver burden.

Results: Caregivers’ reports on the three measures were significantly higher than self-reports. Caregivers’ negative affect and loneliness, not physical health, reported by caregivers predicted higher caregiver burden. Care recipients’ reports did not predict caregiver burden.

Conclusion: Caregivers perceived care recipients’ social and emotional status more negatively, and caregivers’ negative perceptions on care recipients’ well-being status were an important predictor of caregiver burden.  相似文献   


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