Alice de Boer

The impact of informal care-giving networks on adult children's care-giver burden

ABSTRACT Previous research on the care-giver burden experienced by adult children has typically focused on the adult child and parent dyad. This study uses information on multiple informal care-givers and examines how characteristics of the informal care-giving network affect the adult childs care-giver burden. In 2007, 602 Dutch care-givers who were assisting their older parents reported on parental and personal characteristics, care activities, experienced burden and characteristics of other informal care-givers. A path model was applied to assess the relative impact of the informal care-giving network characteristics on the care-giver burden. An adult child experienced lower care-giver burden when the informal care-giving network size was larger, when more types of tasks were shared across the network, when care was shared for a longer period, and when the adult child had no disagreements with the other members of the network. Considering that the need for care of older parents is growing, being in an informal care-giving network will be of increasing benefit for adult children involved in long-term care. More care-givers will turn into managers of care, as they increasingly have to organise the sharing of care among informal helpers and cope with disagreements among the members of the network.

Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work.

Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being. Happiness ratings (as an indicator of subjective well-being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio-economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well-being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for <6 hours a week; and in line with the burden assumption, the results show that providing care for more than 11 hours a week is associated with lower levels of happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well-being assumption. It is concluded that these cross-sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers.

More family responsibility, more informal care? The effect of motivation on the giving of informal care by people aged over 50 in the Netherlands compared to other European countries

Against the backdrop of ongoing population ageing, informal care occupies an important place on European political agendas. This article discusses informal caregiving by middle aged and older persons in the Netherlands and other European countries, with particular emphasis on the role played by motives. The data are drawn from SHARE. Our results show that in the Netherlands, it is mainly feelings of being needed and obligation that increase the chance of informal care being given. Deriving pleasure from an activity, by contrast, reduces the likelihood. In Southern Europe, where the responsibility for providing care lies with the family, we found that, contrary to expectations, older carers do not more often feel obliged. They less often report that they feel needed or see being socially active as a way of contributing to society. Our simulations suggest that if the socially active Dutch had the same motives as their Southern European counterparts and behaved similarly in terms of informal caregiving, the number of informal carers would fall. This implies that a greater policy emphasis on family responsibility could actually bring about a decline in the amount of care given, as opposed to the envisaged increase.

Providing informal care in a changing society

The ageing of society is leading to significant reforms in long-term care policy and systems in many European countries. The cutbacks in professional care are increasing demand for informal care considerably, from both kin and non-kin. At the same time, demographic and societal developments such as changing family structures and later retirement may limit the supply of informal care. This raises the question as to whether the volume of informal care (in people) will increase in the years ahead. This paper aims to provide a theoretical answer to this question in two steps. First, based on different care models and empirical literature, we develop a behavioural model on individual caregiving, the Informal Care Model. The model states that, in response to the care recipient’s need for care, the intention to provide care is based on general attitudes, quality of the relationship, normative beliefs, and perceived barriers. Whether one actually provides care also depends on the care potential of the social context, being the family, the social network, and the community. Second, we discuss how current policy and societal developments may negatively or positively impact on these mechanisms underlying the provision of informal care. Given the increased need for care among home-dwelling individuals, the model suggests that more people will take up the caregiver role in the years ahead contributing to larger and more diverse care networks. It is concluded that long-term informal care provision is a complex phenomenon including multiple actors in various contexts. More research is needed to test the Informal Care Model empirically, preferably using information on care recipients, informal caregivers and community care in a dynamic design and in different countries. Such information will increase insight in the developments in informal care provision in retrenching welfare states.

Belasting van werkende mantelzorgers

SamenvattingHet verrichten van mantelzorg kan leiden tot een (te) hoge belasting. In dit artikel gaan we na in hoeverre de mate van belasting van werkende mantelzorgers samenhangt met kenmerken van hun werk (zoals de omvang van de arbeidsduur en de sector) en in hoeverre strategieën voor het combineren van betaald werk met mantelzorg die belasting (lijken te) verminderen. Daarbij wordt rekening gehouden met de objectieve belasting, persoonskenmerken van mantelzorgers en de ondersteuning door anderen. De gegevens zijn afkomstig van het onderzoek Informele hulp 2007 van het Centraal Bureau voor de Statistiek en het Sociaal en Cultureel Planbureau. De analyses richten zich op mantelzorgers tussen de 18 en 65 jaar met betaald werk (van minstens een uur per week) (n=1343). Van deze groep geeft 19% aan dat zij ernstig belast zijn door het helpen. Deze groep ervaart dat de zorg te veel op hun schouders neerkomt, dat hun zelfstandigheid in de knel raakt en dat de zorgverlening ten koste gaat van hun gezondheid. De vier strategieën, individueel afspraken maken met de werkgever, het opnemen van vakantiedagen, het gebruik van verlofregelingen en de aanpassing van de arbeidsduur, worden vaker toegepast door matig tot zwaar belaste werkende mantelzorgers. Als echter ook rekening wordt gehouden met objectieve belasting, kenmerken van mantelzorgers, het verkrijgen van mantelzorgondersteuning en werkkenmerken, dan is het effect van verlofregelingen en individuele afspraken met de werkgever niet langer significant. In het algemeen blijken werkkenmerken en werkstrategieën slechts een klein deel van de variantie in de belasting te verklaren. Net als bij niet-werkende mantelzorgers, komt een hogere belasting vooral voor bij werkende mantelzorgers die intensieve en complexe zorg bieden dan wel hun partner of kind verzorgen.

Mantelzorg op waarde geschat

Nederlanders vinden het de gewoonste zaak van de wereld om hun zieke en gehandicapte naasten te helpen. Deze steun is zo vanzelfsprekend dat de economische waarde ervan vaak over het hoofd wordt gezien. De mantelzorg vertegenwoordigt een groot kapitaal.AbstractValuation of informal careIn the Netherlands many people provide informal care because they regard it as a natural thing to do. This mutual support is so common that its economic value is often overlooked. Informal care represents however a large capital. The monetary value of informal care of adults who provide long term and intensive help is estimated at € 6.6 billion (2007). The informal care is not only valued according to the time spent on care, but also to how much informal carers would be willing to spend on an additional hour of care (€ 9,52 per hour). Our findings suggests that the valuation of informal care is a useful technique in estimating the possible costs and effects of new policy measures in long term care.

Kinderen en jongeren met een langdurig ziek gezinslid in Nederland

Ongeveer 450.000 kinderen en jongeren (5-23 jaar) wonen samen met een langdurig lichamelijk of psychisch ziek gezinslid (12%). De meerderheid woont samen met een langdurig zieke ouder. Enkele tienduizenden hebben een langdurig zieke broer of zus. Onder de 13 tot 23 jarigen met zieke gezinsleden zijn lage sociaal economische groepen, allochtonen en eenoudergezinnen oververtegenwoordigd. Hun culturele participatie blijft achter bij de gemiddelde jongere, maar ze doen vaker aan sport in verenigingsverband, ook als gecorrigeerd wordt voor leeftijd, inkomen en etniciteit. Ze hebben net zo vaak als andere jongeren een (bij)baantje. In deze bijdrage gaan we in op de aantallen en enkele verschillen tussen jeugdigen met en zonder langdurig zieke gezinsleden.AbstractChildren and young adults with a chronically ill family member in The Netherlands; numbers and several characteristicsAbout 450.000 young children and adults (5-23 years) live with a family member who has a long-term physical or psychological illness (12%). The majority lives with a sick parent, several thousand with a sick sibling. Groups with lower socioeconomic status, immigrants and single-parent families are overrepresented among young adults (13-23 years). Their cultural participation lags behind that of the average young adult but they participate more often in sporting clubs, even after correction for age, income and ethnicity. They have a (sideline) job as often as other youngsters. This article focuses on the most recent numbers and several differences between young adults with and without sick family members.

Zorgen we genoeg voor de mantelzorger

SamenvattingMet de invoering van de Wet maatschappelijke ondersteuning behoort de ondersteuning van mantelzorgers tot de verantwoordelijkheid van het lokale bestuur.

Mantelzorgers met een vergoeding uit een persoonsgebonden budget (pgb)

SamenvattingIn dit artikel gaan we na in hoeverre mantelzorgers met en zonder een vergoeding uit een persoonsbonden budget (pgb) van elkaar verschillen in kenmerken van de zorgsituatie, kenmerken van de mantelzorger zelf en de mate van belasting en ondersteuning. De gegevens zijn afkomstig uit het onderzoek Informele Hulp 2007 van het Centraal Bureau voor de Statistiek en het Sociaal en Cultureel Planbureau. De analyses hebben betrekking op 112 betaalde en 2336 onbetaalde mantelzorgers van 18 jaar en ouder. Mantelzorgers met een intensieve hulptaak krijgen relatief vaak een vergoeding via het pgb, net als verzorgers van personen met een verstandelijke beperking of personen die iemand verzorgen die veel emotionele steun nodig heeft; mantelzorgers van dementerenden zijn juist ondervertegenwoordigd in de analyses. Ook maken mantelzorgers die een vergoeding ontvangen uit een pgb regelmatig gebruik van respijtvoorzieningen, zoals oppas, logeervoorziening of dagopvang. Indien gecontroleerd wordt voor verschillen in ondersteuning is de kans dat verzorgers van kinderen en vrienden een pgb-vergoeding krijgen, groter dan de kans dat andere mantelzorgers een pgb-vergoeding krijgen. Dit verschil kan niet worden verklaard uit de ernst van de zorgsituatie.AbstractCompensation for informal care via a care budgetThis paper presents a comparison of informal caregivers receiving a monetary compensation via a care budget with those who do not receive compensation for their care tasks, concerning the characteristics of the care situation, caregiver, care burden and practical support. The data used come from the study Informal Help 2007 of Statistics Netherlands and the Netherlands Institute for Social Research. The analyses include 112 compensated and 2336 uncompensated informal caregivers of 18 years and older. Caregivers with an intensive care task are more frequently compensated via a care budget (pgb), similar to caregivers of persons with a development disability or those in need of emotional support, while caregivers of people with dementia are underrepresented. Paid caregivers also make more use of practical support to substitute their caring tasks temporarily. After controlling for variance in practical support, compensation is more frequent in care giving for children and friends. This difference cannot be explained by the severity of the care situation.Keywords: budgets for care, compensation, informal care, care situation, social relation and practical support

Male and Female Partner-Caregivers’ Burden: Does It Get Worse Over Time?

Background and Objectives The general view is that partner-caregiver burden increases over time but findings are inconsistent. Moreover, the pathways underlying caregiver burden may differ between men and women. This study examines to what degree and why partner-caregiver burden changes over time. It adopts Pearlins Caregiver Stress Process Model, as it is expected that higher primary and secondary stressors will increase burden and larger amounts of resources will lower burden. Yet, the impact of stressors and resources may change over time. The wear-and-tear model predicts an increase of burden due to a stronger impact of stressors and lower impact of resources over time. Alternatively, the adaptation model predicts a decrease of burden due to a lower impact of stressors and higher impact of resources over time. Research Design and Methods We used 2 observations with a 1-year interval of 279 male and 443 female partner-caregivers, derived from the Netherlands Older Persons and Informal Caregivers Survey Minimum Data Set. We applied multilevel regression analysis, stratified by gender. Results Adjusted for all predictors, caregiver burden increased over time for both men and women. For female caregivers, the impact of poor spousal health on burden increased and the impact of fulfillment decreased over time. Among male caregivers, the impact of predictors did not change over time. Discussion and Implications The increase of burden over time supports the wear-and-tear model, in particular for women. This study highlights the need for gender-specific interventions that are focused on enabling older partners to be better prepared for long-term partner-care.