Les proches des personnes souffrant d'une démence

Les syndromes démentiels évoluent sur plusieurs années et touchent la personne dans sa globalité, altérant ses fonctions cognitives, son comportement et ses capacités relationnelles. Le patient perd peu à peu son indépendance. Les proches vont alors jouer un rôle essentiel auprès de lui et devront s'adapter à l'évolution de ses besoins, assumant progressivement surveillance, guidance et aide concrète. L'inestimable contribution des familles et les difficultés liées à l'exercice de ce rôle sont encore trop peu reconnues. De nombreuses études décrivent les conséquences négatives de l'aide naturelle. Toutefois les données sont moins riches quant aux déterminants de ces conséquences. Les proches ont souvent besoin d'information, de conseil et de soutien psychologique. Les programmes psychoéducatifs sont une des possibilités d'aide auprès de l'entourage de patients déments. [Auteurs]

Trauma and disorganized attachment in refugee children : integrating theories and exploring treatment options

Refugee families incur many different types of stressors in the course of the phases prior to flight, those of flight, and resettlement. Multiple and varied negative life events and traumas, such as those experienced by refugee families, may give rise to negative changes in attachment between children and their parents. However, such negative changes in attachment may be countered through the use of culturally appropriate counselling theories and their respective interventions. The integration of attachment theory with family systems, trauma systems, and cognitive behavioural theories and the use of cognitive behavioural caregiver support, filial therapy training, and play therapy interventions are discussed as a treamtent framework for promoting more positive and secure attachments between refugee children and their caregivers.

Public health significance of bipolar disorder: implications for early intervention and prevention.

OBJECTIVES: Early intervention and preventive strategies have become major targets of research and service development in psychiatry over the last few years. Compared to schizophrenia, bipolar disorder (BD) has received limited attention in this regard. In this paper, we review the available literature in order to explore the public health significance of BD and the extent to which this may justify the development of early intervention strategies for this disorder. METHODS: The main computerized psychiatric literature databases were accessed. This included Medline and PsychInfo, using the following keywords: bipolar, early intervention, staging model, burden, caregiver, public health, and manic depression. RESULTS: BD is often recurrent and has an impact that goes well beyond symptomatic pathology. The burden it incurs is linked not only to its cardinal clinical features, but also to cognitive dysfunction, poor functional outcome, poor physical health, high rate of comorbidities, and suicide. At a societal level, BD induces enormous direct and indirect costs and has a major impact on caregivers. The available literature reveals a usually long delay between illness onset and the start of treatment, and the absence of specific guidelines for the treatment of the early phase of BD. CONCLUSIONS: Considering the major impact of BD on patients and society, there is an urgent need for the development of early intervention strategies aimed at earlier detection and more specific treatment of the early phase of the disorder.

Calidad de vida y necesidades de formación de las cuidadoras formales de personas mayores dependientes institucionalizadas

Objetivo: Identificar la calidad de vida, satisfacción personal y laboral de las Auxiliares de Geriatría cuidadoras de personas mayores institucionalizadas. Metodología: Estudio descriptivo realizado a partir de datos cuantitativos y datos cualitativos. El tamaño de la muestra fue de 12 Auxiliares de Geriatría que trabajan en el Centro Sociosanitario Ricard Fortuny y en la Residencia Sant Francesc de Vilafranca del Penedès. Resultados: La mayoría está satisfecha con su vida personal y tienen una buena calidad de vida. Les gusta su trabajo y están motivadas, sin embargo, manifiestan estar poco valoradas y remuneradas, piensan que la formación es importante para ofrecer unos cuidados de calidad. Conclusiones y discusión: Se necesita una formación especializada para ofrecer unos cuidados de calidad a los mayores institucionalizados, ello no sólo influye en la satisfacción laboral de las Auxiliares de Geriatría, sino también en su satisfacción personal y calidad de vida.

Naisen tehtävä : aviovaimot dementiapotilaan omaishoitajina

English summary: A woman's lot : wives as caregivers to their demented husbands

Calidad de vida y necesidades de formación de las cuidadoras formales de personas mayores dependientes institucionalizadas

Objetivo: Identificar la calidad de vida, satisfacción personal y laboral de las Auxiliares de Geriatría cuidadoras de personas mayores institucionalizadas. Metodología: Estudio descriptivo realizado a partir de datos cuantitativos y datos cualitativos. El tamaño de la muestra fue de 12 Auxiliares de Geriatría que trabajan en el Centro Sociosanitario Ricard Fortuny y en la Residencia Sant Francesc de Vilafranca del Penedès. Resultados: La mayoría está satisfecha con su vida personal y tienen una buena calidad de vida. Les gusta su trabajo y están motivadas, sin embargo, manifiestan estar poco valoradas y remuneradas, piensan que la formación es importante para ofrecer unos cuidados de calidad. Conclusiones y discusión: Se necesita una formación especializada para ofrecer unos cuidados de calidad a los mayores institucionalizados, ello no sólo influye en la satisfacción laboral de las Auxiliares de Geriatría, sino también en su satisfacción personal y calidad de vida.

Etudiants en médecine et centres médico-sociaux: préparer l'avenir [Medical students and community health care centers: preparing the future].

Since 2011, second year medical students from Lausanne University follow a single day course in the community health care centers of the Canton of Vaud. They discover the medico-social network and attend to patients' visits at home. They experience the importance of the information transmission and the partnership between informal caregivers, professional caregivers, general practitioner and hospital units. The goal of this course is to help the future physicians to collaborate with the community health care centers teams. This will be particularly important in the future with an aging and more dependant population.

Family burden related to clinical and functional variables of people with intellectual disability with and without a mental disorder

Few studies have been found that to assess the factors that explain higher levels of familyburden in adults with intellectualdisability (ID) and intellectualdisability and mental disorders (ID-MD). The aims of this study were to assess familyburden in people with ID and ID-MD and to determine which sociodemographic, clinical and functionaldisabilityvariables account for familyburden. The sample is composed of pairs of 203 participants with disability and their caregivers, of which 33.5% are caregivers of people with ID and 66.5% of ID-MD. Assessments were performed using scales of clinical and functionaldisability as the following instruments: Weschler Adult Intelligence Scale-III (WAIS-III), Inventory for Client and Agency Planning (ICAP), Psychiatric Assessment Schedule for Adults with Development Disability (PAS-ADD checklist), Disability Assessment Schedule of the World Health Organization (WHO-DAS-II) and familyburden (Subjective and Objective FamilyBurden Inventory - SOFBI/ECFOS-II). People with ID-MD presented higher levels of functionaldisability than those with ID only. Higher levels of familyburden were related to higher functionaldisability in all the areas (p < 0.006-0.001), lower intelligence quotient (p < 0.001), diagnosis of ID-MD (p < 0.001) and presence of organic, affective, psychotic and behavioral disorders (p < 0.001). Stepwise multiple regression showed that behavioral problems, affective and psychotic disorder, disability in participation in society, disability in personal care and presence of ID-MD explained more than 61% of the variance in familyburden. An integrated approach using effective multidimensional interventions is essential for both people with ID and ID-MD and their caregivers in order to reduce familyburden.

Family impact in intellectual disability, severe mental health disorders and mental health disorders in ID. A comparison

Family impact (or family burden) is a concept born in the field of mental health that has successfully been exported to the ambit of intellectual disability (ID). However, differences in family impact associated with severe mental health disorders (schizophrenia), to ID or to mental health problems in ID should be expected. Seventy-two adults with intellectual disability clients of the Carmen Pardo-Valcarce Foundation's sheltered workshops and vocational employment programmes in Madrid (Spain), 203 adults diagnosed with schizophrenia from four Spanish Community Mental Health Services (Barcelona, Madrid, Granada and Navarra) and 90 adults with mental health problems in ID (MH-ID) from the Parc Sanitari Sant Joan de Déu Health Care Site in Sant Boi de Llobregat, Barcelona (Spain) were asked to participate in the present study along with their main caregivers. Family impact experienced by caregivers was assessed with the ECFOS-II/SOFBI-II scale (Entrevista de Carga Familiar Objetiva y Subjetiva/Objective and Subjective Family Burden Interview). In global terms, results showed that the higher family impact was found between caregivers to people with MH-ID. The interaction of both conditions (ID and mental health problems) results in a higher degree of burden on families than when both conditions are presented separately. There was also an impact in caregivers to people with schizophrenia, this impact being higher than the one detected in caregivers to people with intellectual disability. Needs of caregivers to people with disability should be addressed specifically in order to effectively support families.

Calidad de vida y necesidades de formación de las cuidadoras formales de personas mayores dependientes institucionalizadas

Objetivo: Identificar la calidad de vida, satisfacción personal y laboral de las Auxiliares de Geriatría cuidadoras de personas mayores institucionalizadas. Metodología: Estudio descriptivo realizado a partir de datos cuantitativos y datos cualitativos. El tamaño de la muestra fue de 12 Auxiliares de Geriatría que trabajan en el Centro Sociosanitario Ricard Fortuny y en la Residencia Sant Francesc de Vilafranca del Penedès. Resultados: La mayoría está satisfecha con su vida personal y tienen una buena calidad de vida. Les gusta su trabajo y están motivadas, sin embargo, manifiestan estar poco valoradas y remuneradas, piensan que la formación es importante para ofrecer unos cuidados de calidad. Conclusiones y discusión: Se necesita una formación especializada para ofrecer unos cuidados de calidad a los mayores institucionalizados, ello no sólo influye en la satisfacción laboral de las Auxiliares de Geriatría, sino también en su satisfacción personal y calidad de vida.

Cuidado informal, redes de apoyo y políticas de vejez

El sector informal como recurso, se refiere a la red de provisión, que en un rol amplio, ayuda a resolver problemas identificados en el sector formal de salud y sociosanitario. Se refiere a diferentes tipos de arreglos cotidianos que las personas desarrollan o ponen en práctica, para cuidarse y atenderse entre sí. La autora centra su reflexión en los dilemas y límites, individuales y sociales que plantea el cuidado informal, y tiene especialmente en cuenta el impacto e importancia desde la perspectiva de género, ya que el cuidado informal es un recurso central en la atención a la dependencia y fragilidad. Los retos a resolver tienen que ver con los modos de relación y el impacto de los mismos sobre la organización social del cuidar y de los cuidados en la protección a las situaciones de fragilidad y dependencia.

Parents living with HIV in a high-income country: do patients need specific support?

The number of HIV-infected persons with children and caregiving duties is likely to increase. From this statement, the present study was designed to establish how HIV infected caregivers organise their parenting routines and to determine their support needs. A further aim was to ascertain caregivers' perception of conspicuous behaviours displayed by their children. Finally, it sought to determine the extent to which the caregivers' assessment of their parenting activity is influenced by the required support and their children's perceived conspicuous behaviours. The study design was observational and cross-sectional. Sampling was based on the 7 HIV Outpatient Clinics associated with the national population-based Swiss HIV Cohort Study. It focused on persons living with HIV who are responsible for raising children below the age of 18. A total of 520 caregivers were approached and 261 participated. An anonymous, standardised, self-administered questionnaire was used for data collection. The data were analysed using descriptive statistical procedures and backward elimination multiple regression analysis. The 261 respondents cared for 406 children and adolescents under 18 years of age; the median age was 10 years. The caregivers' material resources were low. 70% had a net family income in a range below the median of Swiss net family income and 30% were dependent on welfare assistance. 73% were undergoing treatment with 86% reporting no physical impairments. The proportion of single caregivers was 34%. 92% of the children were living with their HIV infected caregivers. 80% of the children attended an institution such as a school or kindergarten during the day. 89% of the caregivers had access to social networks providing support. Nevertheless, caregivers required additional support in performing their parenting duties and indicated a need for assistance on the material level, in connection with legal problems and with participation in the labour market. 46% of the caregivers had observed one or more conspicuous behaviours displayed by their children, which indicates a challenging situation. However, most of these caregivers assessed their parenting activity very favourably. Backward elimination multiple regression analysis indicated that a smaller number of support needs, younger age of the eldest child and fewer physical impairments on the part of the caregiver enhance the caregivers' assessment of their parenting activity. Physicians should speak to caregivers living with HIV about their parenting responsibilities and provide the necessary scope for this subject in their consultation sessions. Physicians are in a position to draw their patients' attention to the services available to them.

Revisió sobre l’eficà cia de les intervencions dirigides a cuidadors informals de malalts amb demència per a reduir els nivells de morbiditat psicològica

Revisió sobre l’eficàcia de les intervencions dirigides a cuidadorsinformals de malalts amb demència per a reduir els nivells de morbiditatpsicològicaAntecedentsL’envelliment de la població està relacionat amb l’augment de la prevalença dedemències tals com la malaltia d’Alzheimer. El caràcter progressiu, incapacitanti irreversible de la malaltia d’Alzheimer comporta dependència i demanda,obligant l’aparició d’un cuidador informal per cobrir les necessitats del malalt.Amb l’evolució de la malaltia, augmenta l’exigència de les cures i el cuidador esveu en risc de patir alteracions a qualsevol nivell, principalment a nivellpsicològic.Objectius1. Avaluar l’efectivitat de les intervencions dirigides a cuidadors informals depersones amb demència per a reduir la morbiditat psicològica, segons latipologia de les intervencions i els seus components.2. Avaluar l’efectivitat de les intervencions dirigides a cuidadors informals depersones amb demència per a reduir la morbiditat psicològica, segons lescaracterístiques sociodemogràfiques del cuidador i la persona que rep lescures, el tipus de càrrega i els instruments de mesura.Material i mètodesEs va realitzar una revisió bibliogràfica en les bases de dades: MEDLINEPubMed, CSIC-IME, CUIDEN i Biblioteca Cochrane Plus sobre lesintervencions dirigides a cuidadors informals de demència o Alzheimerd’estudis publicats entre el gener de 2002 i febrer de 2013. Els criteris d’inclusióvan ser: cuidadors informals que convisquessin amb la persona a qui donen lescures i sense remuneració econòmica, persones amb demència o Alzheimer noinstitucionalitzades, intervencions comparades entre un grup experimental i ungrup control, prioritat per revisions sistemàtiques i metanàlisis. La mostra finalla van composar 7 estudis.ResultatsLes diferents intervencions analitzades van mostrar dades estadísticamentsignificatives tot i produir efectes discrets en les diferents variables demorbiditat psicològica. Les intervencions psicoeducatives i les intervencionsdirigides als pacients van resultar efectives en la millora de la sensació debenestar i la simptomatologia del malalt. Les intervencions psicològiques vanincidir en la sobrecàrrega i la depressió. Les intervencions de suport vanproduir un augment dels coneixements, habilitats i de la xarxa social delcuidador. El dia de descans va disminuir l’estrès, l’ansietat i la càrrega objectivaperò els efectes van ser a curt termini. Les intervencions múltiplesestructurades van mostrar una disminució del risc d’institucionalització. Lesintervencions centrades en la resolució de problemes, superiors a 6 sessions oaquelles que havien realitzat seguiment, van mostrar efectes a llarg termini finsals 12 mesos. Altres intervencions pràctiques com les realitzades al domicili oamb tecnologia, no van mostrar suficient evidència científica. El sexe i l’edat delcuidador així com la relació de parentesc amb el malalt van mostrar diferènciesen els efectes de les intervencions.ConclusionsLes intervencions s’han de planificar en funció de les necessitats del cuidadorja que no hi ha cap intervenció que incideixi en totes les variables de morbiditatpsicològica. La variabilitat de tipologia i composició de les intervencions, lesdiferències sociodemogràfiques del cuidador i la persona que rep les cures i lescaracterístiques dels estudis influeixen en l’heterogeneïtat de resultats de larevisió. Aquests fets limiten la contundència de resultats pel que cal seguirinvestigant

Abatacept improves health-related quality of life, pain, sleep quality, and daily participation in subjects with juvenile idiopathic arthritis.

OBJECTIVE: To assess health-related quality of life (HRQOL) in abatacept-treated children/adolescents with juvenile idiopathic arthritis (JIA). METHODS: In this phase III, double-blind, placebo-controlled trial, subjects with active polyarticular course JIA and an inadequate response/intolerance to &#8805;1 disease-modifying antirheumatic drug (including biologics) received abatacept 10 mg/kg plus methotrexate (MTX) during the 4-month open-label period (period A). Subjects achieving the American College of Rheumatology Pediatric 30 criteria for improvement (defined "responders") were randomized to abatacept or placebo (plus MTX) in the 6-month double-blind withdrawal period (period B). HRQOL assessments included 15 Child Health Questionnaire (CHQ) health concepts plus the physical (PhS) and psychosocial summary scores (PsS), pain (100-mm visual analog scale), the Children's Sleep Habits Questionnaire, and a daily activity participation questionnaire. RESULTS: A total of 190 subjects from period A and 122 from period B were eligible for analysis. In period A, there were substantial improvements across all of the CHQ domains (greatest improvement was in pain/discomfort) and the PhS (8.3 units) and PsS (4.3 units) with abatacept. At the end of period B, abatacept-treated subjects had greater improvements versus placebo in all domains (except behavior) and both summary scores. Similar improvement patterns were seen with pain and sleep. For participation in daily activities, an additional 2.6 school days/month and 2.3 parents' usual activity days/month were gained in period A responders with abatacept, and further gains were made in period B (1.9 versus 0.9 [P = 0.033] and 0.2 versus -1.3 [P = 0.109] school days/month and parents' usual activity days/month, respectively, in abatacept- versus placebo-treated subjects). CONCLUSION: Improvements in HRQOL were observed with abatacept, providing real-life tangible benefits to children with JIA and their parents/caregivers.

Anà lisi del coneixement, de l'actitud i de l'ús que fan els cuidadors informals dels malalts d' Alzheimer en el domicili, de les contencions mecà niques i farmacològiques

L’objectiu d’aquest estudi consisteix en saber quins coneixements posseeixen, quines actituds i quin ús fan els cuidadors informals de persones diagnosticades d’Alzheimer en el domicili, de les contencions mecàniques i farmacològiques. Aquest projecte es tracta d’un disseny exploratori, descriptiu i transversal. Per a realitzar-lo es prendrà com a mostra a cuidadors principals informals, que tinguin al seu càrrec persones diagnosticades d’Alzheimer que siguin usuàries de l’atenció primària dels serveis sanitaris públics, de la província de Barcelona. L’estudi integrarà dues fases: la primera consistirà en realitzar una prova pilot a un nombre reduït de persones que servirà per avaluar i perfeccionar l’eina de la recollida de dades (els instruments a emprar seran una enquesta d’elaboració pròpia i entrevistes) i la segona consistirà en efectuar la recollida de dades a partir de l’enquesta modificada i validada en la fase anterior. En la fase pilot es realitzarà l’anàlisi de les dades a través de la tècnica coneguda com <<Anàlisi del contingut>> i en la fase següent, s’utilitzarà el paquet estadístic SPSS versió 21.0.0.