Trade-off between formal and informal care in Spain

The remarkable growth of older population has moved long term care to the front ranks of the social policy agenda. Understanding the factors that determine the type and amount of formal care is important for predicting use in the future and developing long-term policy. In this context we jointly analyze the choice of care (formal, informal, both together or none) as well as the number of hours of care received. Given that the number of hours of care is not independent of the type of care received, we estimate, for the first time in this area of research, a sample selection model with the particularity that the first step is a multinomial logit model. With regard to the debate about complementarity or substitutability between formal and informal care, our results indicate that formal care acts as a reinforcement of the family care in certain cases: for very old care receivers, in those cases in which the individual has multiple disabilities, when many care hours are provided, and in case of mental illness and/or dementia. There exist substantial differences in long term care addressed to younger and older dependent people and dependent women are in risk of becoming more vulnerable to the shortage of informal caregivers in the future. Finally, we have documented that there are great disparities in the availability of public social care across regions.

Informal care and labour force participation among middle-aged women in Spain

Informal care is today the form of support most commonly used by those who need other peoplein order to carry out certain activities that are considered basic (eating, dressing, taking a shower,etc.), in Spain and in most other countries in the region. The possible labour opportunity costsincurred by these informal carers, the vast majority of whom are middle-aged women, have not asyet been properly quantified in Spain. It is, however, crucially important to know these quantities ata time when public authorities appear to be determined to extend the coverage offered up to nowas regards long-term care.In this context, we use the Spanish subsample of the European Community Household Panel (1994-2001) to estimate a dynamic ordered probit and so attempt to examine the effects of various typesof informal care on labour behaviour. The results obtained indicate the existence of labouropportunity costs for those women who live with the dependent person they care for, but not forthose who care for someone outside the household. Furthermore, whereas caregiving for morethan a year has negative effects on labour force participation, the same cannot be said of those who start caregiving and stop caregiving .

Predictors of Independent Living Outcomes Among Older Women Receiving Informal Care

This study examined the predictors of independent living outcomes among community–living older women who received informal care. The central hypothesis was that older women’s level of functioning is influenced by their relationship with their informal caregiver. The study attempted to understand the independence of older women through the perspective of both informal caregivers and the older women themselves. The following eight variables were measured: 1) the older women’s independence (dependent variable); 2) the relationship between older women and their informal caregivers (independent variable); 3) roles of both the informal caregiver and older women (independent variable); 4) the older women’s attitudes toward aging (independent variable); 5) the older women’s age identity (independent variable); 6) the older women’s health (control variable); 7) the older women’s level of social support (control variable); and 8) the older women’s level of depression (control variable). The variables were measured from the perspective of the older woman herself and her informal caregiver. This study used an ecological and developmental framework along with role theory to understand the interaction among the aforementioned variables through a cross-sectional design. The recruited older women participants of this study were receiving ongoing care and personal assistance from two large home care agencies located in Miami, FL. An analysis was conducted through a mixed-methods incorporated into the study design. The present study aimed to contribute to the understanding of how the relationship between older women and their informal caregivers influences older women’s ability to maintain independent outcomes. The primary finding of this study was that there were both positive and negative experiences within the relationship dynamic of older women and their informal caregivers and that this relationship was either unidirectional or bi-directional.

The domiciliary support in the vision of the informal care provider

The home support services are a social response in order to improve the quality of life directed predominantly for the elderly and for people with varying degrees of disability and dependence. Examples of those services are hygiene and personal comfort, medication, housekeeping and cleaning, preparation and monitoring of the meals; the dressing, etc. It is necessary to make society aware of the importance of these services to all those who need them. The general objective was to understand the most important relationships among informal caregivers, those who are care and home support services providers. Material and Methods. Data were collected through a questionnaire, using the various dimensions of the construct Quality SERVPERF model of service that matches the 22 items of SERVQUAL model. The various items used to assess the perception of care individuals and informal caregivers about the quality of home care services. 82 individuals participated providers of informal care, to receive home support services, and exclusion criteria, the fact of having a diagnosed psychiatric illness or psychological factors that prevent them from responding. The analysis was performed with SPSS and SEM-PLS for the estimation of the proposed structural model. Written consent was obtained, free and clear of each subject. Results and Conclusions. The results showed that the relationships with healthcare professionals are the most important positive effects on satisfaction. This research emphasizes the need to work closely with health professionals to improve the relationship between technicians and patients. Although current constructs appear to explain much of the satisfaction, it is recommended that the future researches exploit new variables, to get a better understanding of the effects of public health policies on the quality of life of these patients.

Living on the edge : Social exclusion and the receipt of informal care in older people

Older people have been identified as being at risk of social exclusion. However, despite the fact that care is commonly required in later life and the majority of that care provided by informal carers, a connection between social exclusion and informal care-receipt has rarely been considered. The aim of this study was to examine how informal care-receipt is related to social exclusion. A face-to-face questionnaire survey on social exclusion and informal care-receipt was carried out among older people (n=1255) living in Barnsley, United Kingdom. Multivariable analyses examined the association between social exclusion and categories of informal care-receipt: care receiver; assurance receiver; non-receiver with no need; non-receiver with need. Compared to being a non-receiver with no need participants were more likely to be a care receiver or assurance receiver if they had higher levels of social exclusion. The highest level of social exclusion, however, was found in non-receivers with need. Despite a lack of informal care and support, formal practical support and personal care was also low in this latter group. Findings are discussed in relation to the conceptualisation of care-receipt and how contact with medical services could be an opportunity for identification and appropriate referral of non-receivers with need.

Carers in the welfare state : on informal care and support for carers in Sweden

  The general aim of this dissertation is to describe and analyse patterns of informal care and support for carers in Sweden. One specific aim is to study patterns of informal care from a broad population perspective in terms of types of care and types of carer. A typology of four different care categories based on what carers do revealed that women were much more likely than men to be involved at the ‘heavy end’ of caring, i.e. providing personal care in combination with a variety of other caring tasks. Men were more likely than women to provide some kind of practical help (Study I). Another aim is to investigate which support services are received by which types of informal caregiver. Relatively few informal caregivers in any care category were found to be receiving any kind of support from municipalities or voluntary organizations, for example training or financial assistance (Study II). The same study also examines which kinds of help care recipients receive in addition to that provided by informal carers. It appears that people in receipt of personal care from an informal caregiver quite often also receive help from the public care system, in this case mostly municipal services. However, the majority of those receiving personal, informal care did not receive any help from the public care system or from voluntary organizations or for-profit agencies (Study II). The empirical material in studies I and II comprises survey data from telephone interviews with a random sample of residents in the County of Stockholm aged between 18 and 84. In a number of countries there is a growing interest among social scientists and social policymakers in examining the types of support services that might be needed by people who provide informal care for older people and others. A further aim of the present dissertation is therefore to describe and analyse the carer support that is provided by municipalities and voluntary organizations in Sweden. The dissertation examines whether this support is aimed directly or indirectly at caregivers and discusses whether the Swedish government’s special financial investment in help for carers actually led to any changes in the support provided by municipalities and voluntary organisations. The main types of carer support offered by the municipalities were payment for care-giving, relief services and day care. The chief forms of carer support provided by the voluntary organizations were support groups, training groups, and a number of services aimed primarily at the elderly care recipients (Study III). Patterns of change in municipal carer support could be discerned fairly soon. The Swedish government’s special allocation to municipalities and voluntary organisations appears to have led to an increase in the number of municipalities providing direct support for carers, such as training, information material and professional caregiver consultants. On the other hand, only minor changes could be discerned in the pattern of carer support services provided by the voluntary organizations. This demonstrates stability and the relatively low impact that policy initiatives seem to have on voluntary organizations as providers (Study IV). In studies III and IV the empirical material consists of survey data from mail questionnaires sent to municipalities and voluntary organizations in the County of Stockholm. In the fields of social planning and social work there appears to be a need to clarify the aims of support services for informal carers. Should the support be direct or indirect? Should it be used to supplement or substitute caregivers? In this process of reappraisal it will be important to take the needs of both caregivers and care recipients into account when developing existing and new forms of support. How informal caregivers and care recipients interact with the care system as a whole is undeniably a fertile field for further research.

Do Spanish informal caregivers come to the rescue of dependent people with formal care unmet needs?

This paper analyses the effect of unmet formal care needs on informal caregiving hours in Spain using the two wavesof the Informal Support Survey (1994, 2004). Testing for double sample selection from formal care receipt and theemergence of unmet needs provides evidence that the omission of either variable would causes underestimation of thenumber of informal caregiving hours. After controlling for these two factors the number of hours of care increaseswith both the degree of dependency and unmet needs. More importantly, in the presence of unmet needs, the numberof informal caregiving hours increases when some formal care is received. This result refutes the substitution modeland supports complementarity or task specificity between both types of care. For a given combination of formal careand unmet needs, informal caregiving hours increased between 1994 and 2004. Finally, in the model for 2004, theselection term associated with the unmet needs equation is larger than that of the formal care equation, suggestingthat using the number of formal care recipients as a quality indicator may be confounding, if we do not complete thisinformation with other quality indicators.

Who Cares? A comparison of informal and formal care provision in Spain, England and the USA

This paper investigates the prevalence of incapacity in performing daily activities and the associations between household composition and availability of family members and receipt of care among older adults with functioning problems in Spain, England and the United States of America (USA). We examine how living arrangements, marital status, child availability, limitations in functioning ability, age and gender affect the probability of receiving formal care and informal care from household members and from others in three countries with different family structures, living arrangements and policies supporting care of the incapacitated. Data sources include the 2006 Survey of Health, Ageing and Retirement in Europe for Spain, the third wave of the English Longitudinal Study of Ageing (2006), and the eighth wave of the USA Health and Retirement Study (2006). Logistic and multinomial logistic regressions are used to estimate the probability of receiving care and the sources of care among persons age 50 and older. The percentage of people with functional limitations receiving care is higher in Spain. More care comes from outside the household in the USA and England than in Spain. The use of formal care among the incapacitated is lowest in the USA and highest in Spain.

Comparative Study of Informal Health Care Networks and Elderly Health Status in Argentina and Cuba

The objective of this study is to evaluate the impact of informal care support networks on the health status, life satisfaction, happiness and anxiety of elderly individuals in Argentina and Cuba. Recent economic changes, demographic changes, the structure of families and changes in women?s labor participation have affected the availability of informal care. Additionally, the growing number of elderly as a percentage of total population has significant implications for both formal and informal care in Argentina and Cuba. Methods: The SABE - Survey on Health, Well-Being, and Aging in Latin America and the Caribbean, 2000 was used as the data source. The survey has a sample of 10,656 individuals aged 60 years and older residing in private households occupied by permanent dwellers in 7 cities in the Latin American and Caribbean region. My study will focus on the Buenos Aires and Havana samples in which there were 1043 individuals and 1905 individuals respectively. General sampling design was used to establish comparability between countries. Individuals requiring assistance are surveyed on their source of help and the relative impact of informal versus paid help is measured for this group. Other measures of social support (number of living children, companionship and number of individuals living in the same dwelling) are used to measure networks for the full sample. Multivariate probit regression analyses were run separately for Cuba and for Argentina to evaluate the marginal impacts of the types of social support on health status, life satisfaction, happiness and anxiety. Results: For Argentina, almost all of the family help variables positively impact good health. Getting help from most other members of the family negatively impacts satisfaction with life. Happiness is affected differently by each of the family help variables but community support increases the likelihood of being happy. Although none of the family or community help variables show statistical significance, most negatively affect anxiety levels. In Cuba, all of the social support variables have a positive marginal impact on the health status of the elderly. In this case, some of the family and community help variables have a negative marginal impact on life satisfaction; however, it appears that having those closest to the elderly, children, spouse, or other family, positively impacts life satisfaction. Most of the support variables negatively impact happiness. Receiving help from a child, spouse or parent is associated with a marginal increase in anxiety, whereas receiving help from a grandchild, another family member or a friend actually reduces anxiety. Discussion: The study highlights the necessity for enhancing the coordination of various care networks in order to provide adequate care and reduce the burdens of old age on the individual, family and society and the need for consistent support for the caregivers. More qualitative work should be done to identify how support is given and what comprises the support. The constant change and advancement of the world, and the growth of the Latin American and Caribbean region, suggests that more updates studies need to be done.

COMPARATIVE STUDY OF INFORMAL HEALTH CARE NETWORKS AND ELDERLY HEALTH STATUS IN ARGENTINA AND CUBA

This study will explore familial and friend support networks and living arrangements among elderly individuals in Latin America and the impact that this type of support has on the health of the elderly individuals in the countries of interest. Using data from the Survey on Health and Well-Being of Elders (SABE) from 1999-2000, I will explore which type of support has a larger impact on overall health. I will also measure differences in unmet needs for certain health services. This topic is particularly interesting because it will help to uncover what policies are best for aiding in the healthcare of the elderly in aging population. Lastly, the investigation of this topic will allow me to draw conclusions about the most effective means of social and public policy for the elderly community and provide me with information about the role of both informal provisions of support from family and friends, and formal provisions of support from the government. My primary focus will be on Argentina, using Buenos Aires as the sample city, and Cuba, using Havana as the sample city. These two countries have increasingly aging populations, poorer resources and vast inequalities, but, extremely different political, economic and cultural situations. Comparing the two countries will further allow me to determine correlations between health and the existence of support networks, as well as provide me with information to make more general claims that may be of use in the United States. Argentina is particularly interesting to me because of my abroad experience and homestay experience with an older Argentine woman who lived alone but depended upon her family for many healthcare needs, doctors’ visits and general well-being. In Argentina, I experienced a different form of living than I am used to in the United States, where many older individuals or couples live in nursing homes or assisted living facilities rather than alone or with family. The changing economic climate of the two countries coupled with labor patterns of women returning to work at rapid rates indicates that policies cannot just rely on either the formal or informal sector but require a combination of the two sectors working together.This paper will first give background on the difference in the economies and the health care systems in Argentina and Cuba and will show why it interesting to study and compare these two countries. I will then discuss the health status of the elderly in each population as well as discuss the informal care networks and the role of family in each country. This section will then be followed by a description of the data and methods used. I will end by drawing conclusions about the study and the outcomes, and then I will attempt to make suggestions about effective health care policies for the elderly.

O impacto do cuidado informal na qualidade de vida do cuidador

Numa sociedade cada vez mais envelhecida e dependente, as políticas de desinstitunalização e o cuidado informal surgem como resposta a uma procura crescente de cuidados de saúde. O cuidado informal assume assim a responsabilidade pela prestação dos cuidados à pessoa dependente. O presente estudo pretende analisar qual o impacto dessa situação na qualidade de vida do cuidador informal. O principal objetivo deste estudo foi avaliar o impacto na qualidade de vida do cuidador informal no início do processo de cuidados à pessoa dependente. Para tal procedeu-se à realização de um estudo de natureza quantitativa de caracter analítico com aplicação da escala WHOQOL-Bref a uma amostra de 82 cuidadores informais em dois momentos distintos, o primeiro antes e o segundo 2 meses após o início do processo do cuidado informal. Avaliamos a consistência interna dos quatro domínios da escala tendo-se obtido um alfa de Cronbach no domínio: físico (α=0,844), psicológico (α=0,800), ambiente (α=0,807), relações sociais (α=0,706) e a pontuação total (α=0,933). Para proceder à análise inferencial recorreu-se ao Coeficiente de correlação de Spearman, e ao teste- t. Os resultados mostram que o cuidado informal implica uma diminuição significativa na qualidade de vida do cuidador (p <0,001). Constatou-se igualmente que o cuidado informal tem maior impacto na qualidade de vida do homem cuidador do que da mulher cuidadora (p=0,036). Os resultados mostram ainda que o cuidado informal aumenta o consumo de cuidados de saúde em situações de urgência por parte dos cuidadores informais (p <0,001).

Development and psychometric properties of ECPICID-AVC to measure informal caregivers’ skills when caring for older stroke survivors at home

Introduction: Informal caregivers provide a significant part of the total care needed by dependent older people poststroke. Although informal care is often the preferred option of those who provide and those who receive informal care, informal caregivers often report lack of preparation to take care of older dependent people. This article outlines the development and psychometric testing of informal caregivers’ skills when providing care to older people after a stroke – ECPICID-AVC. Design: Prospective psychometric instrument validation study. Methods: Eleven experts participated in a focus group in order to delineate, develop and validate the instrument. Data were gathered among adult informal caregivers (n = 186) living in the community in Northern Portugal from August 2013 to January 2014. Results: The 32-item scale describes several aspects of informal caregiver’s skills. The scale has eight factors: skill to feed/hydrate by nasogastric feeding, skill to assist the person in personal hygiene, skill to assist the person for transferring, skill to assist the person for positioning, skill to provide technical aids, skill to assist the person to use the toilet, skill to feed/hydrate and skill to provide technical aids for dressing/undressing. Analysis demonstrated adequate internal consistency (Cronbach’s alpha = 0.83) and good temporal stability 0.988 (0.984–0.991). Conclusion: The psychometric properties of the measurement tool showed acceptable results allowing its implementation in clinical practice by the nursing community staff for evaluating practical skills in informal caregivers when providing care to older stroke survivors living at home.

La reconnaissance des aidants informels : care, justice et vulnérabilité dans la famille

Doctorat réalisé en cotutelle avec l’Université Paris I- Panthéon Sorbonne.

Performance of long-term care systems in Europe. ENEPRI Policy Brief No. 13, December 2012

The evaluation of long-term care (LTC) systems carried out in Work Package 7 of the ANCIEN project shows which performance criteria are important and – based on the available information – how European countries score on those criteria. This paper summarises the results and discusses the policy implications. An overall evaluation was carried out for four representative countries: Germany, the Netherlands, Spain and Poland. Of the four countries, the Dutch system has the highest scores on quality of life of LTC users, quality of care and equity of the LTC system, and it performs the secondbest after Poland in terms of the total burden of care (consisting of the financial burden and the burden of informal caregiving). The German system has somewhat lower scores than the Dutch on all four dimensions. The Polish system excels in having a low total burden of care, but it scores the lowest on quality of care and equity. The Spanish system has few extreme scores. Some important lessons are the following. The performance of a LTC system is a complex concept where many dimensions have to be included. Specifically, the impact of informal caregiving on the caregivers and on society should not be forgotten. The role of the state in funding and organising LTC versus individual responsibilities is one of the most important differences among countries. Choices concerning private funding and the role of informal care have a large effect not only on the public expenditures but also on the fairness of the system. International research into the relative preferences for the different performance criteria could produce a sound basis for the weights used in the overall evaluation.