Relational aspects of mastery for frail,older adults: The role of informal caregivers in the care process

Frail, older care recipients are often thought of as individuals with a decreased mastery of everyday life skills. Various authors have proposed to acknowledge a relational dimension of mastery, defined as the ability to maintain control over one's life with the help of others. This study explores how frail, older adults experience relational aspects of mastery and the role of their informal caregivers in maintaining these aspects of mastery over the care process. Qualitative interviews (N = 121) were conducted in 2016 with potentially frail, community‐dwelling older adults participating in the Detection, Support and Care for Older people: Prevention and Empowerment (D‐SCOPE) project. A secondary analysis of 65 interviews reveals that, according to frail, older adults, informal caregivers contribute in various ways to the preservation of their mastery. This differs across the four elements of care: caring about (attentiveness), taking care of (responsibility), care‐giving (competence), and care‐receiving (responsiveness). However, in some cases, older adults experienced a loss of mastery; for example, when informal caregivers did not understand their care needs and did not involve them in the decision, organisation, and provision of care. A relational dimension of mastery needs to be acknowledged in frail, older care recipients since stimulating mastery is a crucial element for realising community care objectives and person‐centred and integrated care.     

Differential impacts of care‐giving across three caregiver groups in Canada: end‐of‐life care,long‐term care and short‐term care

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care‐giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end‐of‐life (EOL) care (n = 471); (ii) those providing long‐term care (more than 2 years) for someone with a chronic condition or long‐term illness (n = 2722); and (iii) those providing short‐term care (less than 2 years) for someone with a chronic condition or long‐term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care‐giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of ‘fair or poor’ self‐assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care‐giving, more so than both short‐term and long‐term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care‐giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long‐term or short‐term caregivers. This provides the evidence for the assertion that EOL care‐giving is the most intense type of care‐giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short‐term and long‐term caregivers.     

Care and support for older adults in The Netherlands living independently

The growth in the numbers of older adults needing long‐term care has resulted in rising costs which have forced the Dutch government to change its long‐term care system. Now, the local authorities have greater responsibility for supporting older adults and in prolonging independent living with increased support provided by the social network. However, it is unclear whether these older adults have such a network to rely upon. The objective of this study was to gain insight into the providers of formal and informal care to older adults, and to assess possible differences between older adults who are frail and those who are not. In addition, we investigated their care and support needs. We used data from a quantitative survey using a cross‐sectional design in different regions of the Netherlands from July until September 2014 (n = 181). Frailty was measured using the Tilburg Frailty indicator. To analyse the data chi‐square tests, crosstabs and odds ratios were used for dichotomous data and the Mann–Whitney U‐Test for nominal data. The number of formal care providers involved was significantly higher (median = 2) for those deemed frail than for those not deemed frail (median = 1), U = 2,130, p < .005. However, more than one‐third of the respondents deemed frail did not get the care or support they needed (33.7%). There was a significant positive association between being frail and having an informal care provider (χ² = 18.78, df = 1, p < .005). However, more than one‐third of those deemed frail did not have an informal care provider (36.8%). One‐third of older adults deemed to be frail did not have their needs sufficiently addressed by their care network. For a substantial part of this group of older adults, the informal network seems to be unable to support them sufficiently. Additional attention for their needs and wishes is required to implement the policy reforms successfully.     

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.     

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.     

Self‐management abilities and quality of life among frail community‐dwelling individuals: the role of community nurses in the Netherlands

The objective of the study was to determine whether community nurses in the Netherlands improve self‐management abilities and quality of life of frail community‐dwelling people. This longitudinal study was performed in the context of a larger evaluation study of the ‘Zichtbare Schakels’(Visible Link) programme, conducted to determine the quality of care provided by community nurses to community‐dwelling frail people in Rotterdam, the Netherlands. For the current study, clients seen by community workers in Rotterdam between July 2013 and November 2014 participated. Data were gathered via personal interviews by the community nurses as part of care delivery at the start (T0; n = 220) and end of care delivery (T1; n = 111 – the remaining 109 clients were still receiving care) to evaluate and improve quality of care. We measured client's quality of life (using the EQ5D), self‐management abilities (using the Self‐Management Ability Scale) and background characteristics. Results showed that clients seen by the community nurses especially experience problems when it comes to usual activities and pain/discomfort. Furthermore, quality of life was much worse among clients of the community nurses (0.51) than among frail older (aged ≥70 years) people in Rotterdam (0.61), Dutch patients with chronic illnesses [CVD (0.83), COPD (0.79) or diabetes (0.83)] and older (aged ≥65 years) people who had recently been hospitalised (0.80). Significant improvements were seen in client's self‐management and quality of life over time. Self‐management abilities at T0 and changes in self‐management abilities (T1 – T0) clearly predicted quality of life at T1. Investing in community health nurses may be beneficial for the improvement of self‐management abilities and quality of life among very frail people in the community.     

Mixed care networks of community‐dwelling older adults with physical health impairments in the Netherlands

As part of long‐term care reforms, home‐care organisations in the Netherlands are required to strengthen the linkage between formal and informal caregivers of home‐dwelling older adults. Information on the variety in mixed care networks may help home‐care organisations to develop network type‐dependent strategies to connect with informal caregivers. This study first explores how structural (size, composition) and functional features (contact and task overlap between formal and informal caregivers) contribute to different types of mixed care networks. Second, it examines to what degree these network types are associated with the care recipients' characteristics. Through home‐care organisations in Amsterdam, the Netherlands, we selected 74 frail home‐dwelling clients who were receiving care in 2011–2012 from both informal and formal caregivers. The care networks of these older adults were identified by listing all persons providing help with five different types of tasks. This resulted in care networks comprising an average of 9.7 caregivers, of whom 67% were formal caregivers. On average, there was contact between caregivers within 34% of the formal–informal dyads, and both caregivers carried out at least one similar type of task in 29% of these dyads. A principal component analysis of size, composition, contact and task overlap showed two distinct network dimensions from which four network types were constructed: a small mixed care network, a small formal network, a large mixed network and a large formal network. Bivariate analyses showed that the care recipients’ activities of daily living level, memory problems, social network, perceived control of care and level of mastery differed significantly between these four types. The results imply that different network types require different actions from formal home‐care organisations, such as mobilising the social network in small formal networks, decreasing task differentiation in large formal networks and assigning co‐ordination tasks to specific dyads in large mixed care networks.     

Caregivers of Frail Elderly and Medically Fragile Children:

The purposes of this study were to compare the characteristics and support systems of caregivers of frail elderly and medically fragile children and to determine what factors discriminated between caregivers who could (and could not) continue to provide home health care. Caregivers of children were significantly more likely (X²= 52.30)2), p= < .0000) to report that they were managing OK than caregivers of frail elderly. They also reported receiving more support and assistance from formal and informal sources, although in general, less than 30% of the caregivers received any help. Five variables (Mental impairment of the elder, poor physical and mental health of the caregiver, high monthly caregiving-related expenses, and use of paid in-home assistance) explained 35% of the variance between caregivers of frail elderly who were managing OK and those who were unable to continue to manage. Six variables (physical and mental impairment of the child, physical health of the caregiver, feeling like there were no alternative providers, time demand and lack of assistance from others) explained 26.57% of the variance between caregivers of children who were managing OK and those who were unable to continue to manage. The findings suggest that a strong objective stressor, combined with a lack of personal and social resources are associated with caregivers' perceptions that they cannot continue to manage home health care.     

Informal Care and Caregiver's Health

This study aims to measure the causal effect of informal caregiving on the health and health care use of women who are caregivers, using instrumental variables. We use data from South Korea, where daughters and daughters‐in‐law are the prevalent source of caregivers for frail elderly parents and parents‐in‐law. A key insight of our instrumental variable approach is that having a parent‐in‐law with functional limitations increases the probability of providing informal care to that parent‐in‐law, but a parent‐in‐law's functional limitation does not directly affect the daughter‐in‐law's health. We compare results for the daughter‐in‐law and daughter samples to check the assumption of the excludability of the instruments for the daughter sample. Our results show that providing informal care has significant adverse effects along multiple dimensions of health for daughter‐in‐law and daughter caregivers in South Korea. Copyright © 2013 John Wiley & Sons, Ltd.     

Intergenerational transfers and informal care for disabled elderly persons in China: evidence from CHARLS

Aiming at ‘ageing healthier and ageing better’, a certain amount of high‐quality informal care should be available for elderly persons with physical disability as formal care is barely accessible in China. The demographic transition and family structural changes have dramatically weakened traditional norms of filial piety and the structure of intergenerational transfers. This article employed nationwide representative data from the first wave (2011) of Chinese Health and Retirement Longitudinal Study (CHARLS) in order to identify the duration of informal care provision at home for frail elders (1122 in rural areas and 577 in urban areas, total 1699), measured in monthly hours, before estimating the associations between intergenerational transfers and the received time of informal care with Tobit Model analysis. Results showed that financial support from the younger generation was unexpectedly negatively associated with the monthly hours of care, implying a reduction of caring support along with increasing financial transfers towards older parents. The lack of informal care could not be compensated by having more children, co‐residing with children, or increasing the parent‐to‐child/grandchild transfers. Spouses were shown to replace children as the major caregivers. In addition, the community‐based long‐term care system needs to be promoted to sustain and develop informal care, as the latter will become increasingly important with changing family dynamics. Finally, the received time of informal care, rather than the severity of physical disability measured by difficulty with ADLs or IADLs, was introduced to identify the actual demand for care by elders. The paper argues that it is important to reconceptualise and re‐investigate the duration of care provision in the Chinese context in order to develop standards of payment as part of long‐term care policies.     

Determinants of primary and non-primary informal care-giving to home-based palliative care cancer care-recipients in Ontario,Canada

Informal care plays an important role in the care of care-recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non-primary caregivers. Moreover, little is known about the provision of informal care in the context of home-based palliative care. The purpose of this study was to examine the provision of primary and non-primary informal care-giving and their respective determinants. Primary caregivers assume the main responsibility for care, while non-primary caregivers are those other than the primary caregiver who provide care-giving. A longitudinal, prospective cohort design was conducted and data were drawn from two palliative care programs in Canada between November 2013 and August 2017. A total of 273 caregivers of home-based palliative care cancer care-recipients were interviewed biweekly until the care recipient died. The outcomes were the propensity and intensity of informal care-giving. Regression analysis with instrumental variables was used. About 90% of primary caregivers were spouses and children, while 53% of non-primary caregivers were others rather than spouses and children. The average number of hours of primary and non-primary informal care-giving reported for each 2-week interview period was 83 hr and 23 hr, respectively. Hours of home-based personal support workers decreased the intensity of primary care-giving and the likelihood of non-primary care-giving. Home-based nursing visits increased the propensity of non-primary care-giving. The primary care-giving and non-primary care-giving complement each other. Care recipients living alone received less primary informal care-giving. Employed primary caregivers decreased their provision of primary care-giving, but promoted the involvement of non-primary care-giving. Our study has clinical practices and policy implications. Suitable and targeted interventions are encouraged to make sure the provision of primary and non-primary care-giving, to balance the work of the primary caregivers and their care-giving responsibility, and to effectively arrange the formal home-based palliative care services.     

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.     

Formal home‐care utilisation by older adults in Ireland: evidence from the Irish Longitudinal Study on Ageing (TILDA)

The aim of this study was to provide a population‐based estimate of the utilisation of publicly financed formal home care by older adults in Ireland and to identify the principal characteristics of those utilising formal home care. Data were collected through computer‐aided personal interviews from a representative sample of community living older adults in Ireland. The interviews were conducted between 2009 and 2011 as part of the first wave of the Irish Longitudinal Study on Ageing (TILDA). The study is cross‐sectional in design and limited to participants aged 65 years and older (n = 3507). Results reveal that 8.2% (95% CI 7.1%–9.3%) of participants utilised publicly financed formal home care in the form of home help and/or personal care. Key determinants of formal home‐care utilisation were Instrumental Activity of Daily Living (IADL) difficulty (Adj OR 3.8, 95% CI 2.7–5.3), older age (Adj OR 3.4, 95% CI 2.4–4.8) and living alone (Adj OR 2.6, 95% CI 1.9–3.8). Almost half of those utilising formal care did not self‐report an Activity of Daily Living (ADL) difficulty or an IADL difficulty. Government policy aims to reduce the need for long‐term residential care by providing formal home care for older adults with low to moderate levels of dependency. This requires an increasing emphasis on personal care provision in the home. No evidence was found in this study to suggest that a shift in emphasis from formal domestic to personal care is taking place in Ireland. The absence of standardised assessment and eligibility criteria are deemed to be barriers to reorientation of the system. From a health services perspective, the current situation is not sustainable into the future and requires a focused policy response.     

Caregivers of frail elderly and medically fragile children: perceptions of ability to continue to provide home health care

The purposes of this study were to compare the characteristics and support systems of caregivers of frail elderly and medically fragile children and to determine what factors discriminated between caregivers who could (and could not) continue to provide home health care. Caregivers of children were significantly more likely (chi 2 = 52.30)2), p = < .0000) to report that they were managing OK than caregivers of frail elderly. They also reported receiving more support and assistance from formal and informal sources, although in general, less than 30% of the caregivers received any help. Five variables (Mental impairment of the elder, poor physical and mental health of the caregiver, high monthly caregiving-related expenses, and use of paid in-home assistance) explained 35% of the variance between caregivers of frail elderly who were managing OK and those who were unable to continue to manage. Six variables (physical and mental impairment of the child, physical health of the caregiver, feeling like there were no alternative providers, time demand and lack of assistance from others) explained 26.57% of the variance between caregivers of children who were managing OK and those who were unable to continue to manage. The findings suggest that a strong objective stressor, combined with a lack of personal and social resources are associated with caregivers' perceptions that they cannot continue to manage home health care.     

Predictors of caregiver burden across the home‐based palliative care trajectory in Ontario,Canada

Family caregivers of patients enrolled in home‐based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non‐modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home‐based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi‐weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home‐care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non‐linear fashion from study admission to patient death. Increased monthly unpaid care‐giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non‐modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care‐giving demands, thereby potentially allowing for longer patient care in the home setting.     

Societal costs of home and hospital end‐of‐life care for palliative care patients in Ontario,Canada

In Canada, health system restructuring has led to a greater focus on home‐based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end‐of‐life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end‐of‐life care associated with two places of death (hospital and home) using a prospective cohort design in a home‐based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out‐of‐pocket, informal care‐giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care‐giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end‐of‐life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00CDN = $1.00USD). The estimated total societal cost of end‐of‐life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end‐of‐life care, resulted in changes in the distribution of costs borne by different stakeholders.     

The (cost‐)effectiveness of preventive,integrated care for community‐dwelling frail older people: A systematic review

Integrated care is increasingly promoted as an effective and cost‐effective way to organise care for community‐dwelling frail older people with complex problems but the question remains whether high expectations are justified. Our study aims to systematically review the empirical evidence for the effectiveness and cost‐effectiveness of preventive, integrated care for community‐dwelling frail older people and close attention is paid to the elements and levels of integration of the interventions. We searched nine databases for eligible studies until May 2016 with a comparison group and reporting at least one outcome regarding effectiveness or cost‐effectiveness. We identified 2,998 unique records and, after exclusions, selected 46 studies on 29 interventions. We assessed the quality of the included studies with the Effective Practice and Organization of Care risk‐of‐bias tool. The interventions were described following Rainbow Model of Integrated Care framework by Valentijn. Our systematic review reveals that the majority of the reported outcomes in the studies on preventive, integrated care show no effects. In terms of health outcomes, effectiveness is demonstrated most often for seldom‐reported outcomes such as well‐being. Outcomes regarding informal caregivers and professionals are rarely considered and negligible. Most promising are the care process outcomes that did improve for preventive, integrated care interventions as compared to usual care. Healthcare utilisation was the most reported outcome but we found mixed results. Evidence for cost‐effectiveness is limited. High expectations should be tempered given this limited and fragmented evidence for the effectiveness and cost‐effectiveness of preventive, integrated care for frail older people. Future research should focus on unravelling the heterogeneity of frailty and on exploring what outcomes among frail older people may realistically be expected.     

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.     

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.     

Factors associated with caregiver burden among adult (19–64 years) informal caregivers – An analysis from Dutch Municipal Health Service data

Due to the ageing population and the rising prevalence of chronic diseases, it is expected that the demand on informal caregivers will increase. Many informal caregivers experience burden, which can have negative consequences for their own health and that of the care recipient. To prevent caregiver burden, it is important to investigate factors associated with this burden. We aimed to identify factors associated with caregiver burden in adult informal caregivers. Among a sample of adult informal caregivers (n = 1,100) of the Dutch region of Zaanstreek‐Waterland, perceived caregiver burden, demographic factors, caregiving situation, health‐related factors and socio‐financial factors were measured as part of the national Health Survey in 2016. Using univariate and multivariate logistic regression analysis, for which a backward selection method was applied, associations with caregiver burden were studied. In the multivariate model, time spent providing informal care was significantly associated with perceived caregiver burden, with an odds ratio (OR) [95% confidence interval] of 7.52 [3.93–14.39] for those spending >16 hr compared to 1–2 hr on informal care. Also providing care to their child(ren) (OR: 2.55 [1.51–4.31]), poor perceived health (OR: 1.80 [1.20–2.68]) and loneliness of the caregiver (OR: 2.05 [1.41–2.99]) were significantly associated with caregiver burden. To possibly prevent and reduce informal caregiver burden, factors associated with such burden should be intervened on. As such, special attention should be paid to caregivers who provide many hours of care or provide care to their child(ren), as well as those who have a poor perceived health themselves and/or experience feelings of loneliness.