Caregivers In Spain Research Articles

An estimation of the value of informal care provided to dependent people in Spain.

The aim of this paper was to arrive at an approximation of the value of non-professional (informal) care provided to disabled people living within a household in Spain. We used the Survey on Disabilities, Autonomy and Dependency carried out in 2008 to obtain information about disabled individuals and their informal caregivers. We computed the total number of informal caregiving hours provided by main caregivers in Spain in 2008. The monetary value of informal care time was obtained using three different approaches: the proxy good method, the opportunity cost method and the contingent valuation method. Total hours of informal care provided in 2008 were estimated at 4193 million and the monetary value ranged from EUR23,064 to EUR50,158 million depending on the method used. The value of informal care was estimated at figures equivalent to 1.73-4.90% of the gross domestic product for that year. Informal care represents a very high social cost regardless of the estimation method considered. A holistic approach to care of dependent people should take into account the role and needs of informal caregivers, promote their social recognition and lead to policies that enhance efficient use of formal and informal resources.

Caregivers' burden in patients with COPD.

ObjectiveChronic obstructive pulmonary disease (COPD) is a very prevalent and invalidating disease. The aim of this study was to analyze the burden borne by informal caregivers of patients with COPD.MethodsWe used the Survey on Disabilities, Personal Autonomy, and Dependency Situations (Encuesta sobre Discapacidad, Autonomía personal y Situaciones de Dependencia [EDAD]-2008) to obtain information on the characteristics of disabled individuals with COPD and their caregivers in Spain. Additionally, statistical multivariate analyses were performed to analyze the impact that an increase in dependence would have on the problems for which caregivers provide support, in terms of health, professional, and leisure/social dimensions.ResultsA total of 461,884 individuals with one or more disabilities and with COPD were identified, and 220,892 informal caregivers were estimated. Results showed that 35% of informal caregivers had health-related problems due to the caregiving provided; 83% had leisure/social-related problems; and among caregivers of working age, 38% recognized having profession-related problems. The probability of a problem arising was significantly associated with the degree of dependence of the patient receiving care. Caregivers of patients with great dependence showed a 39% higher probability of presenting health-related problems, 27% more professional problems, and 23% more leisure problems compared with those with nondependent patients.ConclusionThe results show the large impact on society in terms of the welfare of informal caregivers of patients with COPD. A higher level of dependence was associated with more severe problems in caregivers, in all dimensions.

Relationship between global severity of patients with Alzheimer's disease and costs of care in Spain; results from the co-dependence study in Spain.

The objectives of this analysis were to examine how patients' global severity with Alzheimer's disease (AD) relates to costs of care and explore the incremental effects of global severity measured by the clinical dementia rating (CDR) scale on these costs for patients in Spain. The Codep-EA study is an 18-multicenter, cross-sectional, observational study among patients (343) with AD according to the CDR score and their caregivers in Spain. The data obtained included (in addition to clinical measures) also socio-demographic data concerning the patient and its caregiver. Cost analyses were based on resource use for medical care, social care, caregiver productivity losses, and informal caregiver time reported in the resource utilization in dementia (RUD). Lite instrument and a complementary questionnaire. Multivariate regression analysis was used to model the effects of global severity and other socio-demographic and clinical variables on cost of care. The mean (standard deviation) costs per patient over 6 months for direct medical, social care, indirect and informal care costs, were estimated at €1,028.1 (1,655.0), €843.8 (2,684.8), €464.2 (1,639.0) and €33,232.2 (30,898.9), respectively. Dementia severity, as having a CDR score 0.5, 2, or 3 with CDR score 1 being the reference group were all independently and significantly associated with informal care costs. Whereas having a CDR score of 2 was also significantly related with social care costs, a CDR score of 3 was associated with most cost components including direct medical, social care, and total costs, all compared to the reference group. The costs of care for patients with AD in Spain are substantial, with informal care accounting for the greatest part. Dementia severity, measured by CDR score, showed that with increasing severity of the disease, direct medical, social care, informal care and total costs augmented.

The Burden of Parkinson Disease Amongst Caregivers in Spain Over 4 Years.

The Burden of Parkinson Disease Amongst Caregivers in Spain Over 4 Years.

Psychometric properties of the Spanish QoL–AD with institutionalized dementia patients and their family caregivers in Spain

Objectives: To evaluate the psychometric attributes of the Spanish version of the Quality of Life-Alzheimer's Disease Scale (QoL–AD) in institutionalized patients and family caregivers in Spain. Method: 101 patients (88.1% women; mean age, 83.2 ± 6.3) with Alzheimer's disease (AD) (n = 82) and mixed dementia (n = 19) and their closest family caregivers. Patient-related variables included severity of dementia, cognitive status, perceived general health, quality of life, behavior, apathy, depression, and functional status. QoL–AD acceptability, reliability, and construct validity were analyzed. Results: The mean Mini-Mental State Examination (MMSE) score was 7.2 ± 6.1 and Global Deterioration Scale was: stage four (4%); five (21.2%); six (34.3%); and seven (40.4%). Both, QoL–AD patient version (QoL–ADp) (n = 40; MMSE = 12.0 ± 4.5) and QoL–AD caregiver version (QoL–ADc) (n = 101) lacked significant floor and ceiling effects and the Cronbach α index was 0.90 and 0.86, respectively. The corrected item-total correlation was 0.11–0.68 (QoL–ADc) and 0.28–0.84 (QoL–ADp). Stability was satisfactory for QoL–ADp (intraclass correlation coefficient [ICC]=0.83) but low for QoL–ADc (ICC = 0.51); the standard error of measurement was 2.72 and 4.69. Construct validity was moderate/high for QoL–ADc (QUALID=−0.43; EQ-5D = 0.65), but lower for QoL–ADp. No significant correlations were observed between QoL–ADp and patient variables or QoL–ADc. A low to high association (r = 0.18–0.55) was obtained between QoL–ADc and patient-related measures of neuropsychiatric, function, and cognitive status. Conclusion: Differences in their psychometric attributes, and discrepancy between them, were found for QoL–ADp and QoL–ADc. In patients with AD and advanced dementia, the QoL perceived by the patient could be based on a construct that is different from the traditional QoL construct.

Relative importance of patient disease indicators on informal care and caregiver burden in Alzheimer's disease

Cognition, abilities in activities of daily living (ADL), and behavioral disturbances in patients with Alzheimer's disease (AD) all influence the number of hours informal caregivers spend caring for their patients, and the burden caregivers experience. However, the direct effect and relative importance of each disease severity measure remains unclear. Cross-sectional interviews were conducted with 1,222 AD patients and primary caregivers in Spain, Sweden, the U.K. and the U.S.A. Assessments included informal care hours, caregiver burden (Zarit Burden Inventory; ZBI), cognition (Mini-mental State Examination; MMSE), ADL-abilities (Disability Assessment for Dementia scale; DAD), and behavioral symptoms (Neuropsychiatric Inventory Questionnaire; NPI-severity). Multivariate analyses of 866 community-dwelling patients revealed that ADL-ability was the strongest predictor of informal care hours (36% decrease in informal care hours per standard deviation (SD) increase in DAD scores). Severity of behavioral disturbances was the strongest predictor of caregiver burden (0.35 SD increase in ZBI score per SD increase in NPI-Q severity score). In addition, the effect of ADL-abilities was, although attenuated, not negligible (0.28 SD increase in ZBI score per SD increase in DAD score). Decreasing cognition (MMSE) was associated with more informal care hours and increased caregiver burden in univariate, but not in adjusted analyses. For patients residing in community dwellings, the direct influence of patients' cognition on caregiver burden is limited and rather mediated by other disease indicators. Instead, the patients' ADL-abilities are the main predictor of informal care hours, and both ADL-abilities and behavioral disturbances are important predictors of perceived caregiver burden, where the latter has the strongest effect. These results were consistent across Sweden, U.K. and the U.S.A.

Informal Caregiving: Perceived Needs

With the increasing population of persons over the age of 65 who need daily assistance in Spain, there is considerable need to better understand informal caregivers' views, particularly about the resources that are available to them, or should be available to them. With that purpose in mind, a grounded theory method was used with focus groups in Barcelona, Malaga, Seville, and Tenerife. All of the participants were caring for family members with dementia, cancer, or other neurodegenerative conditions. The findings generated 86 codes, which were grouped into two categories: understanding the experience of caregiving, and caregiving resources. The first category was the need for caregivers to talk about their experiences and to be listened to. The second category included the presence of resources and support requirements. The caregivers said that their ability as caregivers was limited; many did not know what resources were available or how to locate new resources. Many caregivers are carrying out their role dutifully, but feel isolated, suggesting that there is a lack of social understanding and policies about informal caregivers in Spain.

Validation of the Subjective and Objective Family Burden Interview (SOFBI/ECFOS) in primary caregivers to adults with intellectual disabilities living in the community

There is little information on the psychometric properties of instruments for assessing family care burden in adults with intellectual disabilities (ID). The aim of this study is therefore to analyse the usefulness of the 'Subjective and Objective Family Burden Interview' (SOFBI) in the assessment of principal caregivers in Spain. The SOFBI was administered to 166 principal caregivers of adults with ID in a vocational centre. The psychometric analysis included: internal consistency, inter-rater and test-retest reliability, construct validity, convergent validity with the World Health Organization's Disability Assessment Schedule II, and feasibility. The Cronbach's alpha was 0.88 for the overall interview and always above 0.7 in the quantitative subdomains. The Kappa coefficients for test-retest were between 0.5 and 0.8, whereas inter-rater agreement was nearly perfect. Maximum-likelihood factor analysis showed four well-defined factors, which fitted the previously designed domains. Feasibility was also good. The SOFBI is a multi-domain, modular instrument which is feasible, reliable and valid for measuring the burden of family caregivers to adults with ID living in the community.

Internet Use by Patients with Lymphoma and Caregivers.

The Internet is changing the way that people learn about health and illness. At present do not exist data of the use of Internet by patients of lymphoma and her caregivers in Spain.OBJECTIVE: To investigate the distribution and patterns of Internet use by patients with lymphoma and her caregivers.PATIENTS AND METHODS: 585 subjects (258 patients, 264 relatives and 63 health professionals), 228 male and 357 female, they have responded a questionnaire on diverse aspects of the use of Internet.RESULTS: Two hundred fifty (42,7%) subjects use Internet, although only 27% make to obtain data on lymphoma. With respect to the group of patients 31% recognize to use Internet, but only the 23,3% do it by questions related to their disease. The main reasons for Internet use are to obtain information about treatments (74.7%) or second opinion medical (9.3%). The 77,6% have been using Internet for more than 3 years; the 47,2% have university studies and the 58,4% have between 33–50 years. Mainly the information search is made in Spanish language and through the Google finder. They consider that Information on lymphoma is acceptable (44.9%) or of enough quality (43.7%), trustworthy (50.6%) or of enough reliability (33.5%) and useful (45.6%) or quite useful (37.3%).COMMENTARIES: This study contributes data on the use of Internet by patients with lymphoma and her caregivers in Spain. Oncologists should be familiar with this important resource to help patients access appropriate material.