Psychopathological features in patients with Parkinson's disease and related caregivers' burden

Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq)

Caregivers’ burden experienced by relatives living with a person suffering from schizophrenia

Abstract: Schizophrenia is a complex chronic disease that turns the affected person into a dependent and disorganized patient. This pathology is responsible for a major burden on the family members who are in charge of taking care of that person. Analyze to what extant can socio-demographic, clinical and environmental variables interfere with the burden felt by family members who live with someone suffering from schizophrenia; to analyze the relationship between a depressive mood state and the burden on the family members who live with a person suffering from schizophrenia were our objectives. As a methodology, quantitative and non-experimental, cross-sectional, descriptive and correlational study. The data collection was done through socio-demographic questionnaires; Vaz Serra and Pio Abreu’s Portuguese version of Beck Depression Inventory (1973); Zarit Burden Interview adapted by Sequeira (2007). 95 informal caregivers taking care of schizophrenic patients were assessed. Participants are mainly female (66%), aged 40 or over (79%) and 36 % are the patients’ mothers. Gender, age and existing family ties variables interfered significantly with the impact caused on the caregiver’s burden. There was a statistically significant correlation between the depressive symptomatology and the burden experienced by the family caregivers. Family/ informal caregiver experience several difficulties when they have to go through a daily process of taking care of a family member suffering from schizophrenia. This situation may cause exhaustion, conflicts, emotional suffering and even depressive symptomatology. This burden of care grows stronger as the patients are older, when they are male and when there are no families ties binding patient and caregiver. These variables must be taken into account in these caregivers’ service plans.

Attenuation of neuropsychiatric symptoms and caregiver burden in Alzheimer's disease by motor intervention: a controlled trial

OBJECTIVE: To analyze the effects of motor intervention on the neuropsychiatric symptoms of Alzheimer's disease and on the caregivers' burden. DESIGN: This is a controlled trial evaluating the effects of a motor intervention program on the neuropsychiatric symptoms. SETTING: The intervention was performed on community patients from two university centers specializing in physical exercise for the elderly. SUBJECTS: Patients with Alzheimer's disease were divided into two groups: sixteen received the motor intervention and sixteen controls (five controls were excluded because of clinical intercurrences). INTERVENTIONS: Aerobic exercises (flexibility, strength, and agility) and functional balance exercises were conducted over six months for 60 minutes three times per week. MAIN MEASURES: Psychopathological features of patients were evaluated with the Neuropsychiatric Inventory and Cornell Scale for Depression in Dementia. Caregivers were evaluated using the Neuropsychiatric Inventory-Distress and Burden Interview. A two-way analysis of variance (ANOVA) was applied to observe interactions (pre- vs. post-intervention; participants vs. controls). RESULTS: Patients from the intervention presented a significant reduction in neuropsychiatric conditions when compared to controls (Neuropsychiatric Inventory: F: 11.12; p = 0.01; Cornell Depression scale: F: 11.97; p = 0.01). The burden and stress of caregivers responsible for patients who participated in the intervention significantly decreased when compared to caregivers responsible for controls (Neuropsychiatric Inventory-Distress: F: 9.37; p = 0.01; Burden Interview: F: 11.28; p = 0.01). CONCLUSIONS: Aerobic exercise was associated with a reduction in the neuropsychiatric symptoms and contributed to attenuate the caregivers' burden. However, the researchers were not blinded to the patient's intervention status, which constitutes an important limitation of this study.

Functional dependence and caregiver burden in Alzheimer's disease: a controlled trial on the benefits of motor intervention

Background: Cognitive decline has a negative impact on functional activities in Alzheimer's disease. Investigating the effects of motor intervention with the intent to reduce the decline in functionality is an expected target for patients and caregivers. The aim of this study was to verify if a 6-month motor intervention programme promoted functionality in Alzheimer's patients and attenuated caregivers' burden. Methods: The sample comprised 32 community patients with Alzheimer's disease and their 32 respective caregivers. Patients were divided into two groups: 16 participated in the motor intervention programme and 16 controls. Subjects performed 60 minutes of exercises, three times per week during the 6-month period, to improve flexibility, strength, agility and balance. Caregivers followed the procedures with their patients during this period. Functionality was evaluated by the Berg Functional Balance Scale and the Functional Independence Measure. Caregivers completed the Neuropsychiatric Inventory Caregiver Distress Scale and the Zarit Carer Burden Scale. Two-way ANOVA was used to verify the interaction between time (pre- and post-intervention) and the motor intervention program. Results: While patients in the motor programme preserved their functionality, as assessed by the Functional Independence Measure, the controls suffered a relative decline (motor intervention group: from 109.6 to 108.4 vs controls: from 99.5 to 71.6; P= 0.01). Patients from motor intervention also had better scores than the controls on functional balance assessed by Berg scale (F: 22.2; P= 0.001). As assessed by the Neuropsychiatric Inventory and Zarit scale, burden was reduced among caregivers whose patients participated in the motor intervention programme compared with caregivers whose patients did not participate in this programme (Neuropsychiatric Inventory, caregiver's part: F: 9.37; P= 0.01; Zarit: F: 11.28; P= 0.01). Conclusion: Patients from the motor intervention group showed reduced functional decline compared to the controls, and there was an associated decrease in caregivers' burden.

成年女儿照料老年父母的心理体验及关系质量作用的研究

Previous researches about family caregiving revealed that caregiving has both negative and positive effects on caregivers’ well-being. Based on Lawton’s two-factor model, this study aims at examining how caring for old parents would affect adult daughters’ psychological well-being. According to Lawton, objective stressors as caregiving would arouse two different kinds of caregivers’ subjective appraisal, i.e., negative appraisal and positive appraisal, which in turn correlate with the negative and positive dimensions of caregivers’ psychological well-being, respectively. There were two main purposes of this study: a) to verify both the negative and positive paths in the two-factor model and their relatively independence; and b) to examine the effects of relationship quality between caregiver and care-recipient on those paths. The results are as follows: 1) Caregiving stressors have significant positive predictive effect on caregivers’ negative appraisal, but have no direct effect on caregivers’ positive appraisal. 2) Caregivers’ negative appraisal has significant positive predictive effect on their negative emotional experience, while caregivers’ positive appraisal has significant positive predictive effect on their positive emotional experience. 3) Certain dimensions of relationship quality, including the Appreciation and General Appraisal, have significant negative predictive effect on caregivers’ negative appraisal, and have significant positive predictive effect on caregivers’ positive appraisal. 4) The Appreciation dimension of relationship quality moderates the path from caregiving demands to caregivers’ burden; and the General Appraisal of relationship quality moderates the path from caregivers’ positive appraisal to life satisfaction. Based on the above results, the researcher concluded that a) both the negative path and positive path exist in caregiving process, and they are relatively independent from each other; and b) relationship quality does moderate certain paths in the model. Meanwhile, the main effect of relationship quality on caregivers’ experience is also significant and more remarkable. This study attempts to explain these results in terms of coping resources. Both relationship quality and many other factors might be explained as resources that caregivers utilize to cope with stress of caregiving. With more resources, caregivers tend to appraise more positively, and less negatively, and vice versa. However, the resources which might affect caregivers’ positive appraisal, as well as the ways they work, may be different from that affect caregivers’ negative appraisal.

La nutrition des personnes âgées en stades précoces de la démence du type Alzheimer (DTA) : exploration du rôle du proche aidant et des répercussions sur sa santé

Contexte : La détérioration de l’état nutritionnel liée à la perte d’autonomie qui accompagne l’évolution de la démence du type Alzheimer (DTA) peut être limitée par un proche aidant efficace. À long terme, le rôle soignant du proche aidant peut affecter sa propre santé physique et psychologique. Objectifs : (1) décrire les caractéristiques sociodémographiques des patients et de leurs proches aidants; (2) examiner l’évolution de la maladie et des variables à l’étude au cours de la période de suivi; (3) explorer la relation possible entre le fardeau perçu du proche aidant, l’état nutritionnel des patients et la stabilité du poids corporel du proche aidant. Hypothèses : L’absence du fardeau chez l’aidant est associée à un meilleur état nutritionnel chez le patient; la détérioration de la fonction cognitive chez le patient s’accompagne d’une augmentation du fardeau perçu par l’aidant; la dégradation du fardeau chez l’aidant conduit à sa perte de poids. Méthode : Les données analysées proviennent de l’étude « Nutrition-mémoire » menée entre 2003 et 2006 dans les trois cliniques de cognition situées dans des hôpitaux universitaires à Montréal. Quarante-deux patients avec une DTA probable vivant dans la communauté et leurs aidants ont été suivis en dyades pendant une période de dix-huit mois. Les analyses ont porté sur les données colligées du recrutement à douze mois plus tard en raison du nombre restreint des patients interviewés à la dernière mesure. La relation entre le fardeau de l’aidant et les variables caractérisant l’état nutritionnel chez les patients a été évaluée à l’aide des analyses de corrélations, du test khi-carré ou du test de Fisher. L’état cognitif des patients était évalué à l’aide du score au Mini-Mental State Examination, le fardeau de l’aidant était estimé par le score au « Zarit Burden Interview », l’état nutritionnel des patients était défini par la suffisance en énergie et en protéines, le score à l’outil de dépistage nutritionnel des aînés, le poids et l’indice de masse corporelle des patients. Résultats : Le fardeau perçu des aidants était associé à la suffisance en énergie chez les patients. Le nombre de patients ayant des apports insuffisants en énergie était plus important chez les dyades où les aidants percevaient un fardeau plus élevé. Toutefois, aucune association n’a été observée entre le fardeau des aidants et le risque nutritionnel ou la suffisance en protéines chez les patients. La détérioration de la fonction cognitive des patients ne semble pas avoir provoqué une augmentation du fardeau chez leurs aidants. De plus, l’augmentation du fardeau de l’aidant n’était pas accompagnée d’une perte de son poids corporel. Par ailleurs, un fardeau plus important a été observé chez les aidants des patients obèses ou présentant un embonpoint. Conclusion : La réduction du fardeau perçu des aidants permettrait d’améliorer les apports alimentaires des patients et ainsi de limiter ou minimiser le risque de détérioration de leur état nutritionnel et de perte de poids.

Expérience de familles cohabitant avec un proche atteint de trouble mental persistant faisant partie d'un programme de services individualisés (PSI) en Catalogne

Mémoire numérisé par la Division de la gestion de documents et des archives de l'Université de Montréal

Anhörigas upplevelser när en familjemedlem som drabbats av demens flyttar in på ett särskilt boende

Bakgrund: När beslutet att flytta in på ett särskilt boende fattats förändras livssituationen för både den som drabbats av demens som för de anhöriga. Syftet: Syftet med denna litteraturöversikt var att studera och beskriva anhörigas upplevelser i samband med att en person som drabbats av demens flyttar in på ett särskilt boende. Metod: Studien genomfördes som en litteraturöversikt. Litteratur­sökningarna gjordes i databaserna Medline och Cinahl efter relevanta artiklar. Sökord som användes var relatives, experience, caregivers burden, coping, dementia, nursing home, placement, decision, Sweden, family caregivers. Sexton vetenskapliga artiklar analyserades med en kvalitativ innehållsanalys. Analysen resulterade i fem olika kategorier: att skapa en relation att känna sig delaktig, att känna skuld, att känna osäkerhet samt att fatta rätt beslut. Resultat: Att ta beslutet att flytta en person som drabbats av demens var svårt, eftersom det ofta är förknippat med skuldkänslor, att inte känna sig delaktig, samt en känsla av osäkerhet, och en oro om att inte ha tagit rätt beslut. Slutsats: Rollen som anhörig till en person som drabbats av demens är svår och det innebär en hög belastning samt en hög nivå av stress. Det är viktigt att den anhörige får stöd och uppmuntran och där har vårdpersonalen en viktig roll.

Self-efficacy moderation and mediation roles on BPSD and social support influences on subjective caregiver burden in Chinese spouse caregivers of dementia patients

Background: This study aims to explore moderation and mediation roles of caregiver self-efficacy between subjective caregiver burden and (a) behavioral and psychological symptoms (BPSD) of dementia; and (b) social support. Methods: A cross-sectional study with 137 spouse caregivers of dementia patients was conducted in Shanghai. We collected demographic information for the caregiver–patient dyads, as well as information associated with dementia-related impairments, caregiver social support, caregiver self-efficacy, and SF-36. Results: Multiple regression analysis showed that caregiver self-efficacy was a moderator both between BPSD and subjective caregiver burden, and social support and subjective caregiver burden. Results also showed a partial mediation effect of caregiver self-efficacy on the impact of BPSD on subjective caregiver burden, and a mediation effect of social support on subjective caregiver burden. Caregiver self-efficacy and subjective burden significantly influenced BPSD and social support. Conclusion: Caregiver self-efficacy played an important role in the paths by which the two factors influenced subjective burden. Enhancing caregiver self-efficacy for symptom management (particularly BPSD) can be an essential strategy for determining interventions to support dementia caregivers in China, and possibly in other countries.

The quality of life and caregiving burden among caregivers of people with dementia in Hanoi, Bac Ninh and Hai Phong, Vietnam

This three phase study aimed to describe dementia carer's quality of life (QoL) and perceived burden, and explore the associations between family carer characteristics, burden and perceived QoL in Vietnam. Dementia carers in the capital, Hanoi, in Phase 1 (N= 153) and from Hanoi, Hai Phong and Bac Ninh in Phase 2 (N=347) completed questionnaires. Survey results showed dementia carers reported low QoL, predicted by high perceived burden. Other carer characteristics including age, gender, family income and perceived experience were significantly associated with QoL. Filial piety contributed to only a single domain of QoL. Phase 3 employed qualitative methods to explore the specific issues faced by daughter carers. Findings suggested that filial gratitude and positive aspects of the role may influence the caring experience of daughter carers. Further investigation of the specific support needs of general dementia carers, and daughter carers in particular, in Vietnam is warranted.

Caregiver burden and resilience among Malaysian caregivers of individuals with severe mental illness

Little research has focused on caregiver burden experienced by Malaysian caregivers of individuals with mental illness, despite the fact that data in the Asian region shows almost threequarter of patients with mental illness live with family members. The aim of this research was to examine the levels of caregiver burden and resilience of caregivers of individuals with severe mental illness and to determine the influencing factors on caregiver burden. A quantitative, cross sectional, correlational design was used to measure burden and resilience and to explore the relationship between demographic variables, caregiver stressors, resilience and caregiver burden. This study was guided by the model of Carer Stress and Burden. Data collection was conducted over two months in summer 2014. A self-administered questionnaire that consisted of four sections measuring demographic data, primary stressors, caregiver burden and resilience was used to collect data. Two hundred and one caregivers of individuals with mental illness attending Psychiatric Outpatient Clinics in Malaysia were recruited. Samples were selected using non-probability, consecutive sampling. Factors that were found to be significantly associated with caregiver burden were caregivers’ age, gender, ethnic group, employment status, having a medical condition and current health status. The primary stressors found to be significantly associated with caregiver burden include the time spent for caregiving tasks, unavailability of support with caregiving tasks, lack of emotional support and patients’ behavioural disturbances. In addition, it was found that caregivers who were less resilient reported a higher level of caregiver burden. Findings from hierarchical multiple regression indicated that caregivers’ marital status, current health status, time spent for caregiving and resilience predicted caregiver burden. This research provides insight into caregiver burden among caregivers of individuals with mental illness in Malaysia. It highlights the important factors associated with caregiver burden and the significant role of resilience in reducing caregiver burden.

Life situations and the care burden for stroke pa­tients and their informal caregivers in a prospective cohort study

Background. The purpose of this study was to analyse whether the parallel life situation between stroke patients and their informal caregivers (dyads) shown in cross-sectional studies prevails also in a longitudinal perspective. Methods. A total of 377 Swedish stroke patients, aged ‡65 years, and their 268 informal caregivers were followed from hospital admission and one year on. Analyses were based on patient interviews, functional ability (MMSE) score, Nottingham Health Profile (NHP) score, Hospital Anxiety and Depression (HAD) score, self-rated health score, and the Gothenburg Quality of Life (GQL) activity score. Similar information was obtained by postal questionnaires from informal caregivers, also including information on the nature and amount of assistance provided and on Caregiver Burden (CB) score. Results. Before index admission informal caregivers provided care on average 5 h per week and after discharge 11 h per week (P < 0.0001). Support volume was associated with patient sex (more for men), low patient’s functional ability, low received municipal social service support, closeness of patient–caregiver relation, and short distance to patient’s home. Significant positive associations within the dyads were found for HAD anxiety score (P < 0.0001), total NHP score (P < 0.0001), and GQL activity score (P < 0.0001) after adjustment for patient’s age, sex, functional ability, and patient–caregiver relationship. CB score increased with amount of informal caregiver support, patient’s age, and with low functional ability and low amount of municipal social service support. All these associations were constant across time. Conclusions. There was an association within the dyads regarding anxiety score, NHP score, and activity score. CB score was generally high.

Dimensional analysis of burden in family caregivers of patients with obsessive-compulsive disorder

Aims: Obsessivecompulsive disorder (OCD) also generates emotional burden in the patient's family members, but no study has evaluated the specific dimensions of burden. The objectives were to evaluate the dimensions of the Zarit Burden Interview (ZBI) and possible correlates. Methods: This was a cross-sectional study involving 47 patients and 47 caregivers, using a sociodemographic questionnaire; the ZBI; the Self Reporting Questionnaire; the Family Accommodation Scale; and the YaleBrown ObsessiveCompulsive Scale. The ZBI factor analysis was conducted using Varimax Rotation. Results: Six factors were identified, explaining 74.2% of the total variance: factor 1, interference in the caregiver's personal life (36.6% of the variance); factor 2, perception of patient's dependence (10.8%); factor 3, feelings of irritation or intolerance (9.2%); factor 4, guilt (7.2%); factor 5, insecurity (5.6%); and factor 6, embarrassment (4.8%). The six ZBI factors were associated with greater OCD severity and with greater accommodation to the patient's symptoms, and factors 1, 2, 5 and 6 with caregiver's psychological morbidity. Caregiver's sex (female) was associated with factors 5 and 6, relationship with the patient (being a parent or son/daughter) with factor 5, higher educational level with factor 6, living with the patient with factor 3, worse self-evaluation of health with factors 1, 5 and 6, and occupational status (not working) with factors 1, 2, 5 and 6. Conclusion: The dimensions of burden identified indicate the most affected aspects of a caregiver's life and could guide the planning of more specific interventions. Thus, the caregiver could participate more effectively in the OCD patient's treatment, with a lower impact on his/her life.

Burden of care and its impact on health-related quality of life of caregivers of individuals with spinal cord injury

Objective: to analyze the impact and burden of care on the Health-Related Quality of Life (HRQOL) of caregivers of individuals with a spinal cord injury (SCI). Method: cross-sectional observational study carried out by reviewing medical records and applying questionnaires. The scale Short Form 36 (SF-36) was used to assess HRQOL and the Caregiver Burden Scale (CBScale) for care burden. Results were analyzed quantitatively. Most patients with SCIs were male, aged 35.4 years old on average, with a predominance of thoracic injuries followed by cervical injuries. Most caregivers were female aged 44.8 years old on average. Results: tetraplegia and secondary complications stand out among the clinical characteristics that contributed to greater care burden and worse HRQOL. Association between care burden with HRQOL revealed that the greater the burden the worse the HRQOL. Conclusion: Preventing care burden through strategies that prepare patients for hospital discharge, integrating the support network, and enabling access to health care services are interventions that could minimize the effects arising from care burden and contribute to improving HRQOL.