Spain

Background: Attention-deficit/hyperactivity disorder (ADHD) is a common neurodevelopmental condition in childhood (5.3% to 7.1% worldwide prevalence), with substantial overall financial burden to children/adolescents, their families, and society.

Background: Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being.

Objective: The aim of this paper is to study the opportunity costs (OC) that are involved in being a caregiver and to compare them with the direct costs assumed by the State and the families. We evaluate direct cost (those that imply a payment-out-of-pocket) and indirect cost (those that imply a dedication in time). We hypothesized that costs increase with the severity of the dementia, with the educational level and active occupational situation of caregiver.

Dementia is a neurocognitive disorder that implies a risk factor of maltreatment by family caregivers. In this study, we analyzed both informal caregiver's perceptions of maltreatment and aspects of the caregiver and caregiving behavior that may be associated with maltreatment. We conducted five focus groups (FGs) in three Spanish cities: Segovia, Soria and León. The themes that were identified were related to two levels of maltreatment: (a) relational and (b) institutional.

In 2006 the Spanish Dependency Law established new rights for people in situation of dependency. The impact of the Law could have also affected the quality of life of their carers. This study aims to understand how the Law may have influenced caregivers’ quality of life through their own perceptions and those of Primary Health Care professionals, and to compare both perspectives. The study used Concept Mapping, a mixed methods technique. In total, 16 caregivers and 21 professionals participated. Both groups identified a mix of positive and negative effects.

The international long-term care (LTC) debate has recently been focusing on how to strengthen home care provision. In this regard, a major role has been played by informal care and how to best integrate it in a holistic care approach. Italy and Spain, usually labeled as “familialist” or “family-based” care models, have been promoting national reforms or actions to support the integration of “informal” actors into the overall LTC system.

Background and Purpose: The aim of this article was to analyze the likelihood of receiving informal care after a stroke and to study the burden and risk of burnout of primary caregivers in Spain.; Methods: The CONOCES study is an epidemiological, observational, prospective, multicenter study of patients diagnosed with stroke and admitted to a Stroke Unit in the Spanish healthcare system. At 3 and 12 months post-event, we estimated the time spent caring for the patient and the burden borne by primary caregivers.

Background: Country-specific data on resource use and costs associated with Alzheimer's disease (AD) help inform governments about the increasing need for medical and financial support as the disease increases in prevalence.; Methods: GERAS II, a prospective observational study, assessed resource use, costs, and health-related quality of life (HRQoL) among patients with AD and their caregivers in Spain.

Background: The study is aimed at developing a new measure devised to evaluate gains associated with caregiving for a person with dementia.; Methods: We conducted two studies with Spanish informal caregivers. In Study 1 a total of 152 participants responded to a preliminary set of 62 items referred to gains related with caregiving.