Interdependency and care over the lifecourse

Interdependency and Care over the Lifecourse draws upon theories of time and space to consider how informal care is woven into the fabric of everyday lives and is shaped by social and economic inequalities and opportunities. The book comprises three parts. The first explores contrasting social and economic contexts of informal care in different parts of the world. The second looks at different themes and dynamics of caring, using fictional vignettes of illness and health, child care, elderly care and communities of care. The book examines the significance to practices of care throughout the lifecourse of: understandings and expectations of care emotional exchanges involved in care memories and anticipations of giving and receiving care the social nature of the spaces and places in which care is carried out the practical time-space scheduling necessary to caring activities. Finally the authors critically examine how the frameworks of caringscapes and carescapes might be used in research, policy and practice. A working example is provided. This book will be of interest to students and researchers of care work, health and social care, geography, sociology of the family and social policy as well as those in business and policy communities trying to gain an understanding of how work and informal care interweave

Enabling older people to stay at home: The costs of substituting and supplementing care with assistive technology

A wide-ranging multiprofessional research project explored issues relating to the introduction of assistive technology into the existing homes of older people in order to provide them with the opportunity to remain at home. The financial relationship between assistive technology and packages of formal care was also explored. The costs of residential care and those of a number of packages containing differing quantities of assistive technology, formal care and informal care were compared. The analyses provide a strong financial case for substituting and/or supplementing formal care with assistive technology, even for individuals with quite disabling conditions. Although needs and hence the cost of provision rise with an increasing level of disability, the savings in care costs accrue quickly. The consideration of a variety of users with different needs and informal care provision, and occupying a very wide range of housing, leads to the conclusion that in comparison with traditional care packages, at worst, incorporating significant amounts of assistive technology into care packages is cost neutral, but that with careful specification of assistive technology major savings are feasible.

General care of the older cancer patient.

With increasing age, there are greater numbers of older people who will be diagnosed with cancer. It must be remembered that such individuals have increased frailty and have a number of geriatric syndromes and conditions particularly pertinent to older age, including incontinence, poor cognition and impaired nutrition. It is often difficult to define the effects of cancer and its treatment or complications, and separate these from the effects of normal ageing and geriatric syndromes. The documentation of poor nutrition and its management must combine knowledge from both geriatric medicine and oncology. Nutrition serves to identify key healthcare professionals who are all essential in any patient at risk or suffering from malnutrition. Incontinence must be actively sought, its cause identified and efforts made to either 'cure' it or, in certain circumstances, 'manage' it. Older patients with cancer are cared for predominantly by older relations and informal care mechanisms and special consideration of their physical and practical needs are paramount. In this area, nurses, doctors, therapists and social workers should work to identify formal and informal mechanisms to support particularly the older carer.

Family-friendly employment laws (re)assessed: the potential of care ethics

In light of various reforms in recent years, this article provides a (re)assessment of the broad package of family-friendly employment rights and relevant dispute resolution procedure now available to pregnant workers and working carers. It exposes how the realities of working life for many pregnant workers and carers and the long standing desire to promote gender equality in informal care-work remain at odds with the legal framework. An argument is presented in favour of an approach that, based upon the concept of care ethics, better engages with the impact of the provisions upon crucial interdependent care relationships.

Relación entre el número de horas de cuidado informal y el estado de salud mental de las personas cuidadoras

Fundamento: La salud mental de las personas cuidadoras se ve perjudicada por las tareas de cuidado. Son necesarios estudios que especifiquen la influencia de diversas variables en la asociación entre cuidado informal y salud mental. El objetivo del trabajo es analizar los efectos del tiempo dedicado al cuidado informal en la salud mental por sexo según el tipo de personas dependientes. Métodos: Los datos que se utilizaron fueron los de la Encuesta Nacional de Salud 2006, cuya muestra estaba compuesta por 29.478 participantes. Variables: salud mental (GHQ-12), tiempo de cuidado, edad, clase social y apoyo funcional (Duke-UNC). Se realizó análisis de regresión logística para determinar la probabilidad de contar con mala salud mental según horas de cuidado, ajustado por edad, clase social y apoyo funcional. Resultados: Las mujeres presentan peor salud mental a partir de 97 horas semanales en el cuidado a menores (OR=1,372), de 25 horas en el cuidado a personas mayores de 74 años (OR=1,602 entre 25 y 48 horas; OR=1,467 49-96h; OR=1,874 97-168h) y cuando dedican alguna hora al cuidado de personas adultas con discapacidad (OR=1,996 0-24h; OR=2,507 25-48h; OR=3,016 49-96h; OR=1,651 97-168h). Los varones muestran deterioro de la salud psicológica cuando dedican un elevado número de horas al cuidado de personas mayores de 74 años (OR=2,810 97168h.) y personas con discapacidad (OR=3,411 97-168h.) y cuando dedican de 0 a 24h al cuidado de menores (OR=1,595). Conclusiones: El efecto del número de horas de cuidado en la salud mental de las personas cuidadoras está influido por el tipo de persona dependiente y por el sexo de la persona cuidadora.

Performance of Long-Term Care Systems in Europe. ENEPRI Research Report No. 117, 21 December 2012

This report evaluates the performance of long-term care (LTC) systems in Europe, with a special emphasis on four countries that were selected in Work Package 1 of the ANCIEN project as representative of different LTC systems: Germany, the Netherlands, Spain and Poland. Based on a performance framework, we use the following four core criteria for the evaluation: the quality of life of LTC users, the quality of care, equity of LTC systems and the total burden of LTC (consisting of the financial burden and the burden of informal caregiving). The quality of life is analysed by studying the experience of LTC users in 13 European countries, using data from the Survey of Health, Ageing and Retirement in Europe (SHARE). Older persons with limitations living at home have the highest probability of receiving help (formal or informal) in Germany and the lowest in Poland. Given that help is available, the sufficiency of the help is best ensured in Switzerland, Italy and the Netherlands. The indirectly observed properties of the LTC system are most favourable in France. An older person who considers all three aspects important might be best off living in Belgium or Switzerland. The horizontal and vertical equity of LTC systems are analysed for the four representative countries. The Dutch system scores highest on overall equity, followed by the German system. The Spanish and Polish systems are both less equitable than the Dutch and German systems. To show how ageing may affect the financial burden of LTC, projections until 2060 are given for LTC expenditures for the four representative countries. Under the base scenario, for all four countries the proportions of GDP spent on public and private LTC are projected to more than double between 2010 and 2060, and even treble in some cases. The projections also highlight the large differences in LTC expenditures between the four countries. The Netherlands spends by far the most on LTC. Furthermore, the report presents information for a number of European countries on quality of care, the burden of informal caregiving and other aspects of performance. The LTC systems for the four representative countries are evaluated using the four core criteria. The Dutch system has the highest scores on all four dimensions except the total burden of care, where it has the second-best score after Poland. The German system has somewhat lower scores than the Dutch on all four dimensions. The relatively large role for informal care lowers the equity of the German system. The Polish system excels in having a low total burden of care, but it scores lowest on quality of care and equity. The Spanish system has few extreme scores. Policy implications are discussed in the last chapter of this report and in the Policy Brief based on this report.

Minding the money: A growing responsibility for informal carers

Managing the assets of older people is a common and potentially complex task of informal care with legal, financial, cultural, political and family dimensions. Older people are increasingly recognised -as having significant assets, but the family, the state, service providers and the market have competing interests in their use. Increased policy interest in self-provision and user-charges for services underline the importance of asset management in protecting the current and future health, care and accommodation choices of older people. Although 'minding the money' has generally been included as an informal care-giving task, there is limited recognition of either its growing importance and complexity or of care-givers' involvement. The focus of both policy and practice have been primarily on substitute decision-making and abuse. This paper reports an Australian national survey and semi-structured interviews that have explored the prevalence of non-professional involvement in asset management. The findings reveal the nature and extent of involvement, the tasks that informal carers take on, the management processes that they use, and that 'minding the money' is a common informal care task and mostly undertaken in the private sphere using some risky practices. Assisting informal care-givers with asset management and protecting older people from financial risks and abuse require various strategic policy and practice responses that extend beyond substitute decision-making legislation. Policies and programmes are required: to increase the awareness of the tasks, tensions and practices surrounding asset management; to improve the financial literacy of older people, their informal care-givers and service providers; to ensure access to information, advice and support services; and to develop better accountability practices.

Exploring care relations in later life: disentangling notions of care and choice

The experience of later life varies widely and is often framed in terms of the active lifestyles of the Third Age and the frailty and abjection of the Fourth Age. This thesis sought to understand how the concepts of care and choice are enacted, experienced and interrelated in the context of both informal and formal care in later life and how older people themselves, their families and significant others understand and experience these concepts. The discourse of personalisation that dominates care services has led to an emphasis on individual choice, control and independence so that those in need of care are faced with what has been described as the ‘logic of choice’, a focus on individual responsibility rather than care. Adopting a Feminist Foucauldian theoretical approach and drawing on Tronto’s (1993) ethic of care, this thesis explores the experiences of older people and their informal carers through dialogical narrative analysis. The stories begin with the recognition by individuals that there is a need for care and how this need is met through negotiations with families and significant others. As needs increase the physical and logistical limits of informal care by individuals are reached, often leading to a need to ‘choose’ formal care. Rather than impacting solely on the care recipient, formal care is shown as being an experience that is shared with informal carers. Indeed, the participants depict how informal care continues alongside formal care and how the boundaries between them become blurred. I argue that a binary division between actively making choices and being a passive recipient are not appropriate to understandings of care. By disentangling the notions of care and choice this thesis explores the extent to which these concepts are relevant to the experience of older people in specific care situations.

Representações sobre a creche dos pais de crianças que frequentam a creche e dos pais que optaram por outro cuidado

Dissertação apresentada na Escola Superior de Educação de Lisboa, para obtenção do grau de Mestre em Ciências da Educação - Especialidade Intervenção Precoce

Frailty as a predictor of short-term adverse outcomes

The objectives of this study were to compare how different frailty measures (Frailty Phenotype/FP, Groningen Frailty Indicator/GFI and Tilburg Frailty Indicator/TFI) predict short-term adverse outcomes. Secondarily, adopting a multidimensional approach to frailty (integral conceptual model–TFI), this study aims to compare how physical, psychological and social frailty predict the outcomes. A longitudinal study was carried out with 95 community-dwelling elderly. Participants were assessed at baseline for frailty, determinants of frailty, and adverse outcomes (healthcare utilization, quality of life, disability in basic and instrumental activities of daily living/ADL and IADL). Ten months later the outcomes were assessed again. Frailty was associated with specific healthcare utilization indicators: the FP with a greater utilization of informal care; GFI with an increased contact with healthcare professionals; and TFI with a higher amount of contacts with a general practitioner. After controlling for the effect of life-course determinants, comorbidity and adverse outcome at baseline, GFI predicted IADL disability and TFI predicted quality of life. The effect of the FP on the outcomes was not significant, when compared with the other measures. However, when comparing TFI’s domains, the physical domain was the most significant predictor of the outcomes, even explaining part of the variance of ADL disability. Frailty at baseline was associated with adverse outcomes at follow-up. However, the relationship of each frailty measure (FP, GFI and TFI) with the outcomes was different. In spite of the role of psychological frailty, TFI’s physical domain was the determinant factor for predicting disability and most of the quality of life.

Cuidados informais : os idosos em situação de dependência em Portugal

RESUMO - Enquadramento: As mudanças demográficas e na estrutura social das famílias precipitaram reformas das políticas dos cuidados de longa duração da população idosa no continente Europeu. Após um período em que as mulheres assumiam o papel de principais cuidadoras dos membros mais idosos, o aumento da sua inclusão no mercado de trabalho, assim como o envelhecimento geral da população introduziu mudanças no enquadramento dos cuidados a idosos. Estas mudanças têm particular impacte nos países da Europa do Sul, visto que tradicionalmente o cuidado a idosos é prestado maioritariamente pelo sector informal. Finalidade/objectivos: O presente estudo tem como finalidade conhecer as características dos cuidadores informais e dos idosos dependentes em Portugal. Definiram-se três objectivos principais. O primeiro é compreender a realidade demográfica, de saúde e dependência funcional dos idosos alvo de cuidados informais em Portugal. Em segundo pretende-se conhecer a situação actual dos prestadores informais de cuidados de longa duração em Portugal. Em terceiro, discutem-se os aspectos que mais influenciam a acessibilidade a cuidados informais entre os idosos dependentes em Portugal. Metodologia: Para concretizar estes objectivos, para além de se proceder a uma sistematização bibliográfica da literatura mais relevante nesta área, recorre-se à análise descritiva e regressão logística binária. Utilizando os dados do inquérito Survey of Health, Ageing and Retirement in Europe descreve-se a realidade nacional dos idosos dependentes e seus cuidadores informais e estimam-se modelos de acessibilidade aos cuidados informais em Portugal. Resultados/conclusões: Este estudo contribui para o conhecimento de três aspectos fundamentais sobre os cuidados informais em Portugal: o primeiro prende-se com a quantificação da realidade nacional dos idosos dependentes em Portugal; o segundo relaciona-se com a quantificação da situação portuguesa dos cuidadores informais; e, por último, estima-se modelos explicativos sobre a acessibilidade a cuidados informais. Para além da quantificação da realidade nacional, o principal contributo deste trabalho reside na demonstração de que o actual modelo de prestação de cuidados (baseado nos cuidados informais prestados por membros da família) deixa de fora uma parte significativa dos idosos dependentes. Na verdade, este estudo demonstra que uma parte significativa dos idosos não tem acesso a cuidados e que, embora sejam os elementos da família que maioritariamente prestam os cuidados informais, esse facto, por si só, não explica o acesso aos cuidados.

Necessidades de cuidados no idoso: comparação entre um Centro de Dia e um serviço de apoio domiciliário

RESUMO: Promover a qualidade de vida no envelhecimento implica responder às necessidades de cuidados dos mais velhos. Actualmente, muitos idosos permanecem no seu domicílio, o que exige a prestação adequada de cuidados informais e/ou formais nesse contexto. O presente estudo teve como objectivo identificar e comparar as necessidades de cuidados de utentes de um centro de dia e de um serviço de apoio domiciliário numa Instituição Particular de Solidariedade Social. A amostra foi constituída por 54 utentes idosos e pelos seus cuidadores informais. Os utentes foram avaliados com recurso a: Camberwell Assessment of Need for the Elderly, Geriatric Depression Scale, Mini Mental State Examination, Índice de Barthel e Escala de Lawton e Brody para as actividades de vida diária. Os respectivos cuidadores informais foram avaliados quanto a necessidades de cuidados e a sobrecarga familiar. As necessidades de cuidados mais frequentes na amostra estavam relacionadas com alimentação, companhia, saúde física e actividades diárias. Parte das necessidades estavam cobertas. Porém, muitas necessidades psicológicas e sociais, nomeadamente actividades diárias, companhia e memória, não estavam cobertas, em particular nos utentes de apoio domiciliário. Tal como esperado, foi encontrado um maior número de necessidades de cuidados em situações de dependência e de doenças neuropsiquiátricas. Comparativamente com os utentes de centro de dia, os utentes de apoio domiciliário apresentaram números superiores de necessidades de cuidados, necessidades não cobertas. Uma melhor identificação das necessidades de cuidados e dos factores associados a estas poderá ajudar a delinear intervenções adequadas em centros de dia e em serviços de apoio domiciliário.------------ABSTRACT: To promote quality of life in aging means responding to the health and social needs of older people. Today, elderly people tend to stay at home until later stages of disease, which requires the provision of adequate informal care, formal care or both. This study aimed to identify and compare the needs for care of users of a day centre and a domiciliary care service, in a nonprofit organization in Portugal. The sample consisted of 54 elderly users and of their informal caregivers. The users were assessed using the Camberwell Assessment of Need for the Elderly (CANE), the Geriatric Depression Scale, the Mini Mental State Examination, the Barthel Index and the Lawton and Brody Scale for activities of daily living. Informal caregivers were assessed using the CANE and the Zarit Burden Interview. The more frequent care needs were related to food, company, physical health and daytime activities. A proportion of needs were met. However, many psychological and social needs were unmet, namely daytime activities, company and memory, and this was so in particular concerning domiciliary care users.As expected, a higher number of needs was related to dependency and the presence of neuropsychiatric conditions. The domiciliary care users had more total needs and more unmet needs when compared with day centre users. The identification of needs for care and their associated factors can help in the planning of appropriate interventions in day centres and domiciliary care services.

Symposium on Dementia and Caregiving 23 May - Presentations

This Symposium, hosted by Dementia Services Information and Development Centre, opened up debate on formal and informal care for people with dementia living in the community and in residential care. ��It also discussed recent research findings on dementia care in Ireland and the United States.Click the link to view the following presentation slides:Professor Steve Zarit - Caregiving at a Cross-Roads; Bridging the Gap between Science and PracticeProfessor Eamon O'Shea - Costing Care for People with Dementia in IrelandDr Caroline O'Nolan - Longterm Residential Care for People with Dementia in Ireland: New Findings from a National SurveyDr Ana Diaz - "I Have a Good Life, I just want to Keep it"; Subjective Understandings and Objective Evaluations of Quality of Life after Diagnosis of DementiaProfessor Charles Normand - Burdens and Paradoxes in Caregiving

Les influències dels factors socials en l'ús de serveis formals

Objectiu: Aquest estudi pretén aportar coneixement sobre el model d’atenció que reben les persones de més de 79 anys dependents del municipi de Vic. Analitzar en quina mesura es fa ús dels serveis formals i quines variables influeixen en la utilització d’aquest. Mètode: Estudi retrospectiu, descriptiu i transversal. De metodologia quantitativa. La població d’estudi són aquelles persones de 80 i més anys de Vic que van sol·licitar la valoració de dependència entre els anys 2007-2010, amb un grau II o III de dependència reconegut i un Pla Individual d’Atenció validat i concedit per la Generalitat de Catalunya (n=453). Les dades provenen de registres de la Generalitat de Catalunya i de l’Àrea d’Afers Socials i Ciutadania de l’Ajuntament de Vic. Les variables dependents són la utilització de recursos formals (teleassitència, servei d’atenció domiciliària –públic i privat- , centre de dia, residència i prestacions econòmiques derivades de la llei de la dependència). El grau de dependència, el gènere, l’edat, l’estat civil, la convivència, el cuidador principal i el nivell de renda es van considerar variables independents. Resultats: El model d’atenció majoritari és el que complementa el suport informal amb el formal (62.3%). L’ús de recursos formals té un paper subsidiari (37.7%). La variable convivència influeix de forma significativa amb l’ús de serveis formals (p&0.001 en l’ús de TAS, el SAD públic i el SAD privat) . Conclusió: Els disseny de programes i criteris de provisió de serveis haurien de contemplar no només el grau de dependència sinó també variables més d’entorn com la convivència. No obstant, existeix encara poca evidència científica en aquesta línia, per això s’hauria de potenciar l’ investigació que permetés analitzar les variables de la funció social de forma més acurada. Paraules clau: Dependència, suport formal, suport informal.

Experiència dels excuidadors i excuidadores principals informals que han tingut cura d'un familiar vell amb demència després de la seva mort

El treball aquí exposat té com a objectiu conèixer i comprendre l’experiència dels excuidadors i excuidadores principals informals que han tingut cura d’un familiar vell amb demència després de la seva mort. Es plantegen les hipòtesis i els objectius generals i específics. S’hi exposa també, la justificació del tema, l’interès, la rellevància a nivell social i professional, i la seva aportació en el món de la salut. En l’apartat de l’estat de la qüestió i la fonamentació conceptual, després d’una revisió bibliogràfica sobre el tema, es descriuen els diferents apartats que formen part del marc teòric: perfil de la persona gran dement que rep cures informals , el perfil dels cuidadors/es, les conseqüències de tenir cura d’una persona dement, l’estat dels excuidadors/es després de la mort del familiar vell amb demència i el procés de dol. El segon apartat inclou la metodologia, i el mètode d’investigació. A més, inclou les matrius d’anàlisi del contingut i del discurs, i es plantegen els resultats en funció dels objectius marcats. En la discussió, a partir de les dades obtingudes, es realitza la seva anàlisi, s’interpreta el resultat i es contraposa amb altres estudis consultats. Finalment s’exposen les conclusions per resumir la informació obtinguda i la metodologia utilitzada. Es realitza una reflexió sobre els aprenentatges adquirits i les aportacions del treball i s’apunten noves vies de recerca. En les referències bibliogràfiques s’especifiquen les fonts consultades i en els annexos hi consten els models d’entrevista i de matriu per a l’anàlisi de dades, el full de consentiment informat i també el buidatge i l’anàlisi de les entrevistes.