Individual determinants of task division in older adults' mixed care networks

Older adults in need of long‐term care often receive help from both informal and formal caregivers. The division of tasks between these different types of caregivers may vary among such mixed care networks. Traditional models of task division suggest that formal and informal caregivers may either supplement each other or specialise in the care activities performed. Our study explores the determinants of various forms of task division in the Netherlands, using data collected in 2007 on 458 mixed care situations. Four types of task divisions of informal and formal care are distinguished: the complementation model [neither Activities of Daily Living (ADL) nor instrumental ADL (IADL) tasks shared, 14%], the supplementation model (both ADL and IADL tasks shared, 39%) and informal and formal specialisation (one type of task shared, one type of task not shared, 27% and 20% respectively). Marginal effects calculated with multinomial regression analyses show that the intensity of care provision, the informal caregivers' motives and the presence of privately paid help – more than care receiver's health – are related to type of task division with formal care. For example, when the informal caregiver provides more hours of help and out of a strong personal bond, the likelihood of informal specialisation increases, whereas the likelihood of formal specialisation decreases. When privately paid help is present, the complementation model is more likely, whereas the supplementation model is less likely to be found. Results are discussed regarding the differential consequences for co‐ordination and co‐operation in mixed care networks.     

Actions to influence the care network of home‐dwelling elderly people: A qualitative study

Positive impact of care networks of home‐dwelling elderly people may be based on several network mechanisms: navigation to resources, negotiation between participants and contagion of behaviours. Little is known about actions of participants—elderly people, informal caregivers or formal care providers—to activate such mechanisms and generate support. Aim of this study was to identify actions in relation to these network mechanisms. A cross‐sectional qualitative study of 48 interviews with home‐dwelling elderly people, informal caregivers and formal care providers in the eastern parts of the Netherlands was conducted between March and September 2016. A framework analysis on network mechanisms categorised actions. Actions were reviewed by network party and compared between networks to explore relations between actions and networks. Results showed that participants navigated through existing relations to seek support. Actions on negotiation were aimed at ameliorating existing relations. Few examples and no actions on contagion of behaviours were found. Actions seemed driven by incidents and existing relations. Elderly people rarely initiated actions, informal caregivers felt hampered by their position in the network. Consistent patterns of relations between actions and network characteristics did not emerge. We concluded that the full potential of network‐based support of elderly people is probably underused. Particularly promising seem: navigating the neighbourhood for new informal care, using opposite opinions as a catalyst for change and bringing quality of life and dilemma's into dialogue in the network.     

Impact of Home Care Management on the Involvement of Informal Caregivers by Formal Caregivers

This study explores the link between management characteristics of home care agencies and the involvement of informal caregivers in caregiving. Based on a study of policy documents of two agencies and semi-structured interviews with five team managers and 31 formal caregivers, we conclude that, although the importance of involving informal caregivers is emphasized in official documentation, actual contact with informal caregivers is often lacking. Comparison of the work processes of the two agencies shows that contact with informal caregivers and their potential involvement are enhanced by smaller teams, less task division, and clarity about the responsibilities of formal caregivers.     

Formal and informal care for community‐dwelling frail elderly people over time: A comparison of integrated and usual care in the Netherlands

While integration has become a central tenet of community‐based care for frail elderly people, little is known about its impact on formal and informal care and their dynamics over time. The aim of this study was therefore to examine how an integrated care intervention for community‐dwelling frail elderly people affects the amount and type of formal and informal care over 12 months as compared to usual care. A quasi‐experimental design with a control group was used. Data regarding formal and informal care were collected from frail elderly patients (n = 207) and informal caregivers (n = 74) with pre/post‐questionnaires. Within‐ and between‐group comparisons and multiple linear regression analyses were performed. The results showed marginal changes over time in the amount of formal and informal care in both integrated care and usual care. However, different associations between changes in formal and informal care were found in integrated and usual care. Most notably, informal caregivers provided more instrumental assistance over time if formal caregivers provided less personal care (and vice versa) in integrated care but not in usual care. These results suggest that integrated care does not necessarily change the contribution of formal or informal care, but changes the interaction between formal (personal care) and informal (instrumental) activities. Implications and recommendations for research and practice are discussed. Trial registration: Current Controlled Trials ISRNT05748494.     

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

BackgroundDementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs.ObjectiveTo identify important components of in‐home care for persons with dementia and their informal caregivers in the Netherlands.DesignSemi‐structured interviews across the Netherlands, between March and June 2019 using thematic analysis.Setting and participantsPersons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi‐structured interviews findings.ResultsFive themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers.ConclusionThis study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.     

Broadening the scope of live‐in migrant care research: How care networks shape the experience of precarious work

Live‐in migrant care work is increasing across welfare states. In the context of ageing populations and changing healthcare systems, live‐in care enables ageing in place without overburdening family caregivers. However, research has shown that live‐in care often puts migrant care workers and their recipients in precarious positions. While the outcome of precarious work has gained attention, it is not self‐evident. Based on interviews with migrant care workers in the Netherlands, as well as formal and informal caregivers, and the staff of intermediary organisations, this study shows that besides client conditions, the interactions of actors in the care network shape the circumstances and experience of migrant live‐in care work. The findings suggest that managing the care networks to which migrant care workers belong makes it possible to mitigate the associated precariousness.     

Does informal care impact utilisation of home‐based formal care services among end‐of‐life patients? A decade of evidence from Ontario,Canada

Understanding how informal care impacts formal care utilisation for home‐based end‐of‐life patients is an important policy‐ and practice‐relevant question. This paper aims to assess the relationship between informal and formal home care among home‐based end‐of‐life patients and how this relationship has changed over the last decade and over the end‐of‐life trajectory. We focus on informal care provided by family members or friends, and three types of home‐based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home‐based end‐of‐life care programme in Ontario, Canada from 2005 to 2016, we build a two‐part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home‐based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home‐based end‐of‐life patients. Decision‐makers need to take into account the relationship between informal care and different types of formal services when introducing future policies.     

The role of social networks in using home care by older people across Continental Europe

The diversification of caregiving arrangements in European societies has drawn attention to the factors that condition the use of care by older people. Social and family relations appear as a key factor, mainly to be related to the availability and accessibility to potential informal caregivers. Recent studies evidenced that geographical proximity and a larger social network increase the probability of receiving informal support in old age. However, the ways in which interpersonal relationships are associated with the use of formal care, as well as the cross‐country variability of this association, have been barely explored. Using a sample of 37,708 individuals aged 65 and over from Wave 6 of the Survey of Health, Ageing and Retirement in Europe (SHARE), this study examines to what extent the characteristics of older people's social networks predict the use of three types of home care; formal, informal, or combined, exploring the cross‐European convergences and divergences. Binomial logistic regressions are conducted to compare four macro‐regions in continental Europe (northern countries: Denmark and Sweden; western countries: Austria, Belgium, France, Germany, Switzerland, and Luxembourg; southern countries: Italy, Spain, Greece, and Portugal; and eastern countries: Poland, Czech Republic, Slovenia, Estonia, and Croatia). The structure, availability, and accessibility to the members of the social network are the major predictors of the receipt of informal care everywhere. Regional divergences are observed regarding to formal care, alone or combined with informal caregivers.     

Trust in older persons: A quantitative analysis of alignment in triads of older persons,informal carers and home care nurses

Self‐management by older persons could be influenced by the level of trust found in triads of informal carers, formal care providers and care recipient, the older person. Little research has been done on care providers’ trust in older persons. This study aims to explore the level of trust that informal carers and home care nurses have in older persons, the extent of alignment in triads and the relationship between trust in older persons and self‐management. We conducted a cross‐sectional survey study in the Netherlands, sampling 133 older persons, 64 informal carers and 72 nurses, which resulted in 39 triads. Alignment level was analysed through Intraclass Correlation Coefficient 1 scores and absolute and mean difference scores. Correlation analysis and one‐way analysis of variance measured the relationship between trust and self‐management. The results show that triads contain both alignment and misalignment. Misalignment occurs mostly when informal carers and nurses have little trust in the older person while this person views their own behaviour towards their caregivers positively. Care providers’ trust levels relate significantly to their perception of the person's ability to self‐manage, but not to the person's self‐rated ability. This could be explained by care providers not communicating their intrinsic trust in the older person to them. Trust building could be enhanced by organising discussions of mutual expectations of trust and both formal and informal care providers could benefit from compassionate assessment training, to learn how to openly express their trust in the older person.     

Zero-inflated endogenous count in censored model: effects of informal family care on formal health care

If informal family health care is a substitute for formal health care, then there is a scope to reduce formal health care cost by promoting informal family health care. With the use of Korean data for the elderly, this paper estimates the effects of informal family health care on formal health care, where the former is measured by the number of caregivers and the latter is measured by the formal health care expenditure. This task, however, poses a number of difficulties. The first is that the number of the family caregivers is an endogenous count regressor. The second is that there are too many zeros in the count (85%). The third is that the response variable also has a nontrivial proportion of zeros (14%). This paper overcomes these problems by combining 'control function approach', 'zero-inflated' counts, and a semiparametric estimator for censored models. The resulting procedure avoids strong parametric assumptions and behaves well computationally. Our main empirical finding is that informal family health care has a large substitute effect for diabetics and that there are also weak evidences that informal family health care has substitute effects for high blood pressure and mental diseases.     

Going Formal or Informal,Who Cares? The Influence of Public Long‐Term Care Insurance

International differences in long‐term care (LTC) use are well documented, but not well understood. Using comparable data from two countries with universal public LTC insurance, the Netherlands and Germany, we examine how institutional differences relate to differences in the choice for informal and formal LTC. Although the overall LTC utilization rate is similar in both countries, use of formal care is more prevalent in the Netherlands and informal care use in Germany. Decomposition of the between‐country differences in formal and informal LTC use reveals that these differences are not chiefly the result of differences in population characteristics but mainly derive from differences in the effects of these characteristics that are associated with between‐country institutional differences. These findings demonstrate that system features such as eligibility rules and coverage generosity and, indirectly, social preferences can influence the choice between formal and informal care. Less comprehensive coverage also has equity implications: for the poor, access to formal LTC is more difficult in Germany than in the Netherlands. Copyright © 2014 John Wiley & Sons, Ltd.     

Exploring the collaboration between formal and informal care from the professional perspective—A thematic synthesis

In Dutch policy and at the societal level, informal caregivers are ideally seen as essential team members when creating, together with professionals, co‐ordinated support plans for the persons for whom they care. However, collaboration between professionals and informal caregivers is not always effective. This can be explained by the observation that caregivers and professionals have diverse backgrounds and frames of reference regarding providing care. This thematic synthesis sought to examine and understand how professionals experience collaboration with informal caregivers to strengthen the care triad. PubMed, Medline, PsycINFO, Embase, Cochrane/Central and CINAHL were searched systematically until May 2015, using specific key words and inclusion criteria. Twenty‐two articles were used for thematic synthesis. Seven themes revealed different reflections by professionals illustrating the complex, multi‐faceted and dynamic interface of professionals and informal care. Working in collaboration with informal caregivers requires professionals to adopt a different way of functioning. Specific attention should be paid to the informal caregiver, where the focus now is mainly on the client for whom they care. This is difficult to attain due to different restrictions experienced by professionals on policy and individual levels. Specific guidelines and training for the professionals are necessary in the light of the current policy changes in the Netherlands, where an increased emphasis is placed on informal care structures.     

An integrative review on family caregivers’ involvement in care of home‐dwelling elderly

Often family members provide care‐giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care‐giving of elderly people becomes a task of family caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long‐term care facilities that family members prefer to be involved in decision‐making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs’ involvement in home‐care settings from the FCs’ perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs’ caring for home‐dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty‐six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included “relationship building with professionals,” “negotiating with professional care,” “being professionally supported,” and “managing role expectations and knowledge sharing”. The fifth theme, “working together” described the mutual care for the care recipient. Although the first four themes were consistent with a pre‐existing conceptual model by Sims‐Gould and Marin‐Matthews (2010), the fifth required an expansion of the model with an additional contribution “collaborative practice”. The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.     

The association between cognitive impairment and community service use patterns in older people living in Australia

Family plays a vital role in supporting individuals with dementia to reside in the community, thus delaying institutionalisation. Existing research indicates that the burden of care‐giving is particularly high for those caring for a person with dementia. Yet, little is known about the uptake of community services by people with a diagnosis of dementia. Therefore, this study aims to better understand the relationship between cognitive impairment and the receipt of community care services. In order to examine the relationship, secondary data collected across Queensland, Australia, from 59,352 home‐care clients aged 65 and over during 2007–2008 are analysed. This cross‐sectional study uses regression analyses to estimate the relationship between cognitive impairment and service mix, while controlling for socio‐demographic characteristics. The dependent variables include formal services, informal care and total home‐care service hours during a 12‐month period. The findings of this study demonstrate that cognitive impairment is associated with accessing more hours of respite and day centre care but fewer hours of other formal care services. Additionally, the likelihood of support from an informal caregiver increases when a client becomes cognitively impaired. Therefore, this study demonstrates that there is an increased need for respite programmes to support informal caregivers in the future, as the population of people living with dementia increases. These findings support the need for investigations of new and innovative respite models in the future.     

You never walk alone: An exploratory study of the needs and burden of an informal care group

Little is known about the dynamics of a group of people giving informal care together. The aim of this study was to investigate the characteristics of an informal care group, the obstacles the informal care group experiences, the needs and desires they have and how the informal care group can be supported by general practitioners (GPs) and other professionals. Nine informal care groups were interviewed based on a questionnaire that was preapproved by the six Flemish official informal caregiver organisations. The results were analysed using open coding. A survey was conducted among 137 caregivers who were part of a group. Univariate analysis was performed. Informal care group usually consist of close relatives of the patient, with often the partner of the patient as the main caregiver. The size of the informal care group depends on the size of the family. If there are more caregivers in a group, the perceived burden of the individual caregiver decreases. The support of the other caregivers in the group increases capacity. The cooperation and agreements are often spontaneously organised and few problems are reported. There is a large variation in the expectations of support from the general practitioner, ranging from availability in emergencies to information about the possibilities of formal home care. This study depicts a positive image of the informal care group. Being part of a caregiver group both decreases burden and increases capacity. Informal care groups usually function well without a need for formal agreements within the group, and they rarely need a third party to coordinate with them or intervene.     

Social security income and the utilization of home care: Evidence from the social security notch

This paper exploits Social Security law changes to identify the effect of Social Security income on the use of formal and informal home care by the elderly. Results from an instrumental variables estimation strategy show that as retirement income increases, elderly individuals increase their use of formal home care and become less likely to rely on informal home care provided to them by their children. This negative effect on informal home care is most likely driven by male children withdrawing from their caregiving roles. The empirical results also suggest that higher Social Security benefits would encourage the use of formal home care by those who would not have otherwise used any type of home care and would also encourage the use of both types of home care services among elderly individuals.     

Investigating the relationship between formal and informal care: An application using panel data for people living together

There is limited evidence on the relationship between formal and informal care using panel data in a U.K. setting and focused specifically on people living together (co‐residents). Using all 18 waves of the British Household Panel Survey (1991–2009), we analyse the effect of informal care given by co‐residents on the use of formal home care and health care services more generally. To account for endogeneity, we estimate models using random effects instrumental variable regression using the number of daughters as a source of exogenous variation. We find that a 10% increase in the monthly provision of informal care hours decreases the probability of using home help (formal home care) by 1.02 percentage points (p < .05), equivalent to a 15.62% relative reduction. This effect was larger for home help provided by the state (β = ?.117) compared with non‐state home help (β = ?.044). These results provide evidence that significant increases in the supply of informal care would reduce the demand for home‐help provision.     

Labor supply effects of long‐term care reform in Germany

Many informal caregivers are of working age, facing the double burden of providing care and working. Negative labor supply effects can severely reduce the comparative cost advantage of informal over formal care arrangements. When designing long‐term care (LTC) policies, it is crucial to understand the effects not only on health outcomes but also on labor supply behavior of informal caregivers. We evaluate labor supply reactions to the introduction of the German long‐term care insurance in 1995 using a difference‐in‐differences approach. The long‐term care insurance changes the caregivers' trade‐off between labor supply and care provision. The aim of the reform was to strengthen informal care arrangements. We find a strong negative labor supply effect for men but not for women. We argue that the LTC benefits increased incentives for older men to leave the labor market. The results reveal a trade‐off for policy makers that is important for future reforms—in particular for countries that mainly base their LTC system on informal care.     

Changing geographies of care: employing the concept of therapeutic landscapes as a framework in examining home space

Changes in health care service delivery have resulted in the transfer of care from formal spaces such as hospitals and institutions towards informal settings such as home. Due to the degree of this transfer, it is increasingly important for geographers to explore the experience and meaning of these changing geographies of care in order to reveal and understand the impact and effect on particular individuals and places. Recognizing that the home environment not only designates a dwelling but also represents a multitude of meanings (such as personal identity, security and privacy) that likely vary according to class, ethnicity and family size (among other socio-demographic variables), it presents a complex site for study. This paper suggests research directions to further understand the role of caregiving in contributing to the experience and meaning of the home environment by informal caregivers, the majority of which are women. Using a political economy approach, this paper first reviews the reorganization of health care services and discusses how this is reshaping the experience of informal caregivers at home. A review of the place identity literature contextualizes the specific discussion of the literature on the meaning of home, both of which are then critically examined. Next, the concept of therapeutic landscapes is discussed as an idealized framework to explore the health-promoting properties of home on informal caregivers. Questions for research are outlined before conclusions highlight how research on home space can allow a better understanding of the impact and effect of caregiving on family caregivers and the places where they live. Such research can inform the changes and trends in health care service policy.     

A qualitative exploration of how Canadian informal caregivers in medical tourism use experiential resources to cope with providing transnational care

Canadians travelling abroad for privately arranged surgeries paid for out‐of‐pocket are engaging in what has come to be known as medical tourism. They are often accompanied by friends or family members, who we call caregiver‐companions. Caregiver‐companions provide care in and across a variety of formal and informal settings, such as in hotels, airplanes and at home. This qualitative study examines the experiences of informal caregivers in medical tourism to learn more about the lived experiences or ‘experiential resources’ they draw upon to cope with providing care and avoiding caregiver burden. The care‐giving literature has demonstrated that such burden can negatively impact caregivers’ well‐being. The unique, transnational context of care‐giving in medical tourism and recent growth in popularity of this practice means that there are few supports or resources currently in place to assist informal caregivers. In this article, we report on an analysis that sought to detail how caregiver‐companions draw upon their previous lived experiences to cope with providing transnational care and to minimise or avoid the onset of caregiver burden. We conducted semi‐structured telephone interviews with 20 Canadians who had accompanied their friends or family members abroad for surgery between September 2013 and January 2014. Thematic analysis revealed the ways that participants had developed practical strategies to deal with the challenges they faced in medical tourism. The interviews revealed three important experiential resources drawn upon by participants: (i) previous experiences of international travel; (ii) previous experiences of informal care‐giving; and (iii) dimensions of the existing relationship with the care recipient. Differences in access to and use of these experiential resources related to participants’ perspectives on medical tourism and the outcomes of the trip. By identifying the experiential resources drawn upon by informal caregivers in medical tourism, we can more effectively identify supportive interventions.