Dementia caregiver burden: reliability of the Brazilian version of the Zarit caregiver burden interview

The object of this article is to examine the reliability of the Brazilian version of the Zarit Caregiver Burden Interview (ZBI). The instrument is a 22-item scale assessing the extent to which caregivers view their responsibilities as having an adverse impact on their social life, health, emotional well-being, and finances. We assessed 50 primary informal caregivers of demented patients coming from 3 different health care centers, using the test-retest method. Analysis of the results showed an intraclass reliability coefficient of 0.88, while Cronbach's coefficient alpha was 0.77 for the test and 0.80 for the retest items. The Brazilian version of ZBI shows sufficient reliability, comparable to the original version.     

老年痴呆患者家庭照顾者负担及干预研究现状分析

目的 明确老年痴呆症患者家庭照顾者负担和干预的研究现状,为减轻照顾者负担提供依据。方法 通过中国知网、万方、维普、Pubmed、Embase、Web of Science等数据库进行文献检索,从老年痴呆患者家庭照顾者的负担情况及其评估工具、干预模式等方面分析。结果 老年痴呆患者家庭照顾者的负担较重;标准化的负担评估工具及有效的干预方法较为缺乏。结论 建议借鉴国内外成功经验,对老年痴呆患者家庭照顾者的负担开发标准化评估工具,及有效的干预策略和方法。     

Living with the person who has Alzheimer's disease: perspectives of family caregiver

The present study aimed at describing and analyzing the fliving of the patient with Alzheimer's Disease under the perspective of the caregiver relative. It was used a qualitative approach. The data was collected by semi-structured interviews with eleven caregiver relatives of patients with Alzheimer's disease. The data was analyzed by the method of content analysis, thematic modality. In the results, the obtained reports were categorized like: the familiarity with the symptomatology and the familiarity with the limitations. It was considered that the Alzheimer's Disease is a familiar disease and, therefore, it is necessary a singular approach of the nurse who must to assume an educator and researcher role, and must to involve himself directly on the invested assistance.     

Elderly caregiver: the knowledge available in LILACS database

This study aimed at analyzing the scientific production about the elderly assistance. Bibliographic review was utilized as a methodological approach based on 2000-2007 LILACS data base. Sixty-four abstracts of the articles were analyzed and categorized per year of publication of the scenery and the methodology and theme presented. As a result, it was noticed that in 2004 there was the largest number of publications, prevailingly in the Southeast of Brazil. As to the scenery, the prevalence of choice was the domicile and the methodological approach was that of qualitative type with the themes grouped into four areas, as follows: institutionalized elderly care, the family and the elderly care, care in its ethical implications, elderly people and nursing care.     

Changes in social roles: a consequence of traumatic brain injury for the family caregiver

The purpose was to study changes in the caregiver's social roles after traumatic brain injury (TBI), relating them with the degree of importance of these roles and with the condition of the victim six months or more after the TBI. The research was developed at the Brain Trauma Clinic of the University of S?o Paulo Hospital das Clínicas with 50 caregivers and 50 victims of TBI, by means of interviews and patient file analysis. A checklist was used for the interview with the caregiver, in order to identify the changes and importance of their social roles. The roles that had suffered most interruption due to the trauma were: friend, amateur/entertainment, family member and worker. The role of being a caregiver was the one that presented more modification. No association was found between change of role and the variables: condition of victim after TBI and importance of the social roles for the caregiver.     

Screening for dementia: family caregiver questionnaires reliably predict dementia

INTRODUCTION: Because of increasing numbers of patients with diseases that cause dementia, primary care physicians must use efficient assessment procedures in their clinics. Important advantages of screening for dementia include determination of the patient's cognitive capacity to participate competently in his/her own medical care and early diagnosis, which enables administration of medications that preserve some cognitive functions. METHODS: A study was conducted to determine whether questionnaires completed by a family caregiver about a patient could differentiate between those with dementia and those with other neurological disorders that do not cause dementia. Clinical and demographic information gleaned from more than 330 consecutive multidisciplinary outpatient dementia clinic assessments were entered into an Institutional Review Board-approved database and analyzed post hoc to answer several research questions. RESULTS: Three questionnaires completed by family caregivers about patients were able to differentiate reliably between patients with dementia with a variety of degenerative disorders and patients without dementia with other neurological disorders that often are mistaken for dementia. When these questionnaires are combined with a patient test (Mini-Mental State Examination), an accurate prediction of which patients suffer from a true degenerative disease that causes dementia was robust (effect size of R2 = 0.81, P <.0001 for the multiple logistic regression analysis). DISCUSSION: These instruments assist the primary care physician to determine which patients seem to suffer from a disease that causes dementia and need further assessment by the physician or at a specialized dementia clinic. The ultimate goal is to assure that patients receive appropriate medical management as early in the disease process as possible.     

非酒精性脂肪肝病住院患者照顾者负担的潜在类别分析

目的 分析非酒精性脂肪肝病住院患者主要的照顾者负担的潜在类别及影响因素。方法 选取非酒精性脂肪肝病住院患者主要照顾者145名,采用照料者负担量表(ZBI)调查照顾者负担现状,用潜在类别分析和无序多分类logistic回归分析探讨照顾者负担的潜在类分别分布特征及其影响因素。结果 根据每个类别的条件概率,可将非酒精性脂肪肝病住院患者主要照料者照顾者负担分为低负担组(29.86%)、高个人负担组(38.19%)、个人负担合并责任负担组(31.94%)三个潜类别。无序多分类logistic回归分析结果显示,照顾者月经济收入≤1 000(OR=0.05,95%CI=0.01～0.62)、1 001～3 000(OR=0.07,95%CI=0.02～0.86)、单独照顾患者(OR=0.01,95%CI=0.01～0.07)、无娱乐活动(OR=0.16,95%CI=0.03～4.72)是高个人负担组的危险因素; 照顾者是女性(OR=2.68,95%CI=0.86～8.38)是合并个人及责任负担组的保护因素、月经济收入≤1 000(OR=0.05,95%CI=0.01～0.55)、1 001～3 000(OR=0.08,95%CI=0.01～0.87)、单独照顾患者(OR=0.02,95%CI=0.02～0.247)是合并个人及责任负担组的危险因素。结论 非酒精性脂肪肝病住院患者主要照料者的照顾者负担存在明显的群体差异性,月经济收入水平低、单独照顾患者、缺乏娱乐活动的照顾者存在较高的个人负担, 除上述三个因素外,男性照顾者更易同时存在个人负担和角色负担,这两类照顾者是重点干预对象。     

Living with a double burden: Meanings of pain for women with fibromyalgia

Living with fibromyalgia (FM) means living with a chronic pain condition that greatly influences daily life. The majority of people with FM are middle-aged women. The aim of this study was to elucidate meanings of pain for women with FM. Fifteen women with FM were interviewed about their pain experiences and a phenomenological hermeneutic interpretation was used to analyse the interview texts. The findings show that meanings of pain for women with FM can be understood as living with a double burden; living with an aggressive, unpredictable pain and being doubted by others in relation to the invisible pain. The ever-present pain was described as unbearable, overwhelming, and dominated the women''s whole existence. Nevertheless, all the women tried to normalize life by doing daily chores in an attempt to alleviate the pain. In order to support the women''s needs and help them to feel well despite their pain, it is important that nurses and health care personnel acknowledge and understand women with FM and their pain experiences.     

Balancing needs as a family caregiver in Huntington's disease: a qualitative interview study

Family members in families with severe chronic disease play important roles in care‐giving. In families affected by Huntington's disease (HD), caregivers encounter practical and emotional challenges and distress. Enduring caregiver burdens may lead to problems and caregivers are in need of social support and health services to deal with challenges. We wanted to explore coping strategies and behaviour patterns used by family caregivers to care for themselves, while caring for a family member with HD. Participants were recruited from hospitals and community‐based healthcare. The sample represents experiences from care‐giving in all stages of the disease. We conducted semi‐structured interviews with 15 family caregivers in Norway. The transcribed material was analysed by use of systematic text condensation, a method for cross‐case thematic analysis of qualitative data. We found that family members used various coping strategies, adjusted to the stage and progression of HD. They tried to regulate information about the disease, balancing considerations for protection and disclosure, within and outside the family. The participants made efforts to maintain a balance between their own needs in everyday life and the need for care for affected family member(s). As the disease progressed, the balance was skewed, and the family caregivers' participation in social activities gradually decreased, resulting in experiences of isolation and frustration. In later stages of the disease, the need for care gradually overshadowed the caregivers' own activities, and they put their own life on hold. Health professionals and social workers should acknowledge that family caregivers balance their needs and considerations in coping with HD. They should, therefore, tailor healthcare services and social support to family caregivers' needs during the different stages of HD to improve caregivers' abilities to maintain some of their own activities, in balance with care‐giving.     

Family caregiver burden in the context of the long-term care insurance system

This paper covers our recent work regarding family caregiver burden for elderly. The topics are as follows: cross-sectional studies on caregiver burden; changes in caregiver burden; appropriateness of the Long-Term Care insurance assessment scheme; attitude towards caregiving among caregivers; and the development of the short version of the Japanese version of the Zarit Caregiver Burden Interview.     

Valuing care recipient and family caregiver time: a comparison of methods

OBJECTIVES: The purpose of this study is to compare the approaches used for valuing family caregiver and care recipient time devoted to providing and receiving care. METHODS: Valuation approaches were operationalized within a cohort of cystic fibrosis care recipients (n = 110). Base-case analyses, grounded in human capital theory, applied earnings estimates to caregiving time to impute the market value of time lost from labor. Unpaid labor and leisure time was valued with a replacement cost (homemaker's wage rate). Total time costs were computed and sensitivity analyses were conducted to describe the effects of alternative valuation methods on total costs. RESULTS: The mean time cost per care recipient-caregiver dyad over 28 days was $2,026CAD. The majority (76 percent) of time costs were due to losses from unpaid labor and leisure time. Varying the valuation of paid labor time did not result in significantly different total time costs (p = .0877). However, varying the method of valuing unpaid labor and leisure time did significantly affect total costs (p < .0001). CONCLUSIONS: Care recipients and caregivers primarily lost time from unpaid labor and leisure in the treatment of cystic fibrosis. Moreover, when the above losses were aggregated, the method of valuation greatly influenced overall results. The findings clearly indicate that omitting caregiver and unpaid labor and leisure costs may result in an inaccurate assessment of ambulatory and home-based healthcare programs.     

Cerebrovascular accident in the aged: changes in family relations

The aims of this study were: to identify aged persons who were victims of Cerebrovascular Accident and received care at the Emergency Unit of a Public Hospital in Ribeir?o Preto-SP, Brazil, and their respective families, as well as to identify the changes in family relations that occurred after the event. In order to identify these changes, the adapted Critical Incident Technique was used, while the analysis was based on the idea of Current of Thought. The sample consisted of 11 families, totaling 34 participants. The analysis of the consequences displayed the changes in family relations, which made up 13 subcategories, 5 of which were positive and 8 negative, totaling 58 alterations, 30 of which were positive and 28 negative. The study revealed the need to work with the family in order to identify changes and develop an action plan to favor the family's relations and adaptation to the demands, with a view to improving the living conditions of its members, including the aged person.     

Future numbers of patients with a cerebrovascular accident in The Netherlands]

Based on future population size estimates, and sex and age specific CVA incidence rates, the yearly number of new cases of CVA in the Netherlands is projected up to 2020. Compared with 1991 the number of patients with a first CVA will increase by at least 4 and at most 6 per cent in 1995, to 41-62 per cent in 2020. Because the prevalence and the number of handicapped patients will probably be much lower, future attention should primarily be directed at support of early phase care facilities.