Informal caregiver and nurse perceptions of access to culturally appropriate health care for ethnic minority persons with dementia: A qualitative study.

AIMS: This study explored what informal caregivers of ethnic minority (EM) persons with dementia in the Netherlands perceive as culturally accessible health care and nurses' perceptions of how cultural competence can be improved to facilitate access to health care for EM persons with dementia and their informal caregivers. DESIGN: Qualitative description research with semi-structured individual interviews and focus group discussions (FGDs). METHODS: Semi-structured interviews with 15 nurses and 6 informal caregivers provided input for two FGDs with nurses about the need to strengthen their cultural competence to improve access to health care for EM persons with dementia and their informal caregivers. Interview data were collected between September 2020 and April 2021 in the Netherlands. Focus group discussion data were collected between June and September 2021 in the Netherlands. RESULTS: Nurses and informal caregivers experienced difficulty building and maintaining a relationship. Contrary to informal caregivers' experiences, nurses felt a shared cultural background with the persons with dementia and informal caregiver is necessary. Although nurses acknowledged the importance of cultural knowledge, cultural skills, in particular, were mentioned as needing improvement. Examples are mapping involved family members and their roles, asking the right questions and letting go of personal judgements. Nurses frequently mentioned stereotypical thinking and seeing 'the other' as different, and collaboration with(in) family proved difficult for informal caregivers and nurses. CONCLUSION: Strengthening cultural skills will contribute to facilitating better access to cultural appropriate health care for EM persons with dementia and their informal caregivers. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. IMPACT: This study explores what is perceived as culturally accessible health care and what nurses need to improve their cultural competence. We show that strengthening nurses' cultural competence by addressing which skills should be improved can improve access to health care for EM persons with dementia and their informal caregivers.

[Did the COVID-19 pandemic change the care situation of older adults?] / Heeft de COVID-19 pandemie de zorgsituatie van ouderen veranderd?

The study examined changes in giving and receiving care by community-dwelling older adults during the COVID-19 pandemic in 2020 compared to a period about two years before. Using data collected in two waves by the Longitudinal Aging Study Amsterdam (N = 1013), we study how many and which older adults report a change in care use and provision and how these changes impact on psychological well-being. The results show that only for a small part of the sample changes occurred. The large majority provides no care (73%) or uses no care (62%) in both waves. 7% stayed a care provider during the pandemic, where 15% quitted care provision and 5% started care provision. 17% remained a care user, where 15% did not receive care anymore and 6% started to use care. The informal carers mainly consisted of women and younger elderly in good health and the care recipients were mainly women and older elderly in poorer health. Using care had a negative impact on psychological well-being, but providing care was not related to wellbeing during the pandemic. The results imply that the pandemic and the measures taken affected the care situation of only a small part of the older adults.

Trends across 20 years in multiple indicators of functioning among older adults in the Netherlands.

BACKGROUND: Monitoring of trends in functioning of older adults provides indispensable information for health care policy. This study examined trends in multiple indicators of functioning among Dutch older adults across a period of 20 years. METHODS: Data from the Longitudinal Aging Study Amsterdam were used. We included 10 870 observations of 3803 respondents aged 64-84 years across seven waves (1992-12) and 931 observations of 603 respondents aged 85-94 years across four waves (2001-12). At each wave, 8 indicators of functioning were measured: multimorbidity, severe functional limitations, depression, anxiety, cognitive impairment, physical inactivity, loneliness and social isolation. In addition, a sum score (range: 0-8) of these indicators was calculated, with a score of ≥5 indicating 'multiple problems.' Trends in functioning over time were assessed using Generalized Estimating Equation analyses. RESULTS: In the 64-84-years-olds, the prevalence of multimorbidity increased over time [OR(year) = 1.06, 95% CI = 1.05-1.06], whereas the prevalence of the other indicators decreased [i.e. cognitive impairment, physical inactivity (in women) and loneliness (in women)] or remained stable [i.e. severe functional limitations, depression, anxiety, physical inactivity (in men), loneliness (in men) and social isolation]. In the 85-94-year-olds, the prevalence of severe functional limitations increased over time [OR(year) = 1.08, 95% CI = 1.02-1.13], whereas the prevalence of the other indicators remained stable. In both age groups, the prevalence of 'multiple problems' remained stable. CONCLUSION: Unfavorable trends were observed in multimorbidity among 64-84-years-olds and in severe functional limitations among 85-94-year-olds. Favorable trends were found in cognitive impairment, physical inactivity (in women) and loneliness (in women) among 64-84-years-olds.

Who provides care in the last year of life? A description of care networks of community-dwelling older adults in the Netherlands.

BACKGROUND: Home-based care networks differ in size and composition, but little is known about the characteristics of care networks for those nearing the end of their lives. This study aimed to identify different types of home-based care networks of community-dwelling older adults in the Netherlands and to assess the association between care network type and the health status and socio-demographic characteristics of care recipients. METHODS/DESIGN: We used data from participants of the Longitudinal Aging Study Amsterdam (2001-2013) with chronic diseases or functional limitations who died within 12 months of their last interview and received home based personal and/or household care (n = 146). Latent Class Analysis was used to model distinct end-of-life care networks among this pooled cross-section of older people whose characteristics imply care needs. The Akaike information criterion was used to determine the optimal model. Associations between network type and care recipient characteristics were explored using conditional inference trees. RESULTS: We identified four types of care networks; a partner network (19%) in which care was mainly provided by partners, with little care from private caregivers or professionals, a mixed network (25%) in which care was provided by a combination of children, professionals and/or other family members, a private network (15%) in which only privately paid care was provided, and a professional network (40%) in which care was mainly provided by publicly paid professionals, sometimes with additional care from family or privately paid caregivers. Care networks near the end of life showed similar characteristics to those identified for older people more generally, but care seemed to be more intensive in the last year of life compared to the years preceding it. End-of-life care networks were mostly related to age, educational level and partner status. Formal care substitutes informal care whenever there is no partner or child present and able to provide care. CONCLUSION: Our findings indicate that personal and household care can be quite intensive in the last year of life, especially for partner caregivers. To prevent caregiver burden, it is important that professionals make sure partner caregivers receive adequate and timely support to cope with the care situation.

[Symposium The future of informal care]. / Symposium De toekomst van de informele zorg.

Due to the reform of long term care in 2015, there is growing concern about whether groups at risk receive the care they need. People in need of care have to rely more on help from their social network. The increased need for informal care requires resilience and organizational skills of families, but also of volunteers, professionals and employers. What does this mean for the provision of informal care in the next decennia? The symposium 'The future of informal care', organized on January 26 2017 by the National Institute for Social Research and the Institute for Societal Resilience of the Vrije Universiteit, addressed possible answers to this question. In her inaugural speech Alice de Boer discussed social inequality as possible determinant and outcome of informal care. Some conclusions:Until 2050 the absolute number of 75-plus doubled to about 3 million persons, but the number of informal caregivers will decrease. In addition to the importance of social and economic resources (the 'have & have-nots'), the ability to arrange care (the 'can & can-nots') gains importance.Almost half of the older employers provides informal care just before retirement. Flexibility in working hours and work location facilitates combining work and care, but about half of the employers indicates that partial retirement and working at home are no options.Informal caregivers and professionals often provide care from comparable perspectives and identities. Addressing similarities rather than differences improves their chances for collaboration.The number of adult children providing household care to older parents increased between 2002 and 2014. This suggests an increase in family solidarity, but current reform policies may increase the gender inequality in caregiving families.Spouses and children remain primary caregivers in the future, preferably supported by many different types of caregivers. Not everybody has the capabilities to organize and direct such a large care network.Providing informal care increases the risk for overburden and absence at work or education. Informal caregivers at risk remain, also in the future, women, spouses, migrants, and younger carers.

The Longitudinal Aging Study Amsterdam: cohort update 2016 and major findings.

The Longitudinal Aging Study Amsterdam (LASA) is an ongoing longitudinal study of older adults in the Netherlands, which started in 1992. LASA is focused on the determinants, trajectories and consequences of physical, cognitive, emotional and social functioning. The study is based on a nationally representative sample of older adults aged 55 years and over. The findings of the LASA study have been reported in over 450 publications so far (see www.lasa-vu.nl ). In this article we describe the background and the design of the LASA study, and provide an update of the methods. In addition, we provide a summary of the major findings from the period 2011-2015.

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.

Transitions between care networks: a prospective study among older adults in the Netherlands.

As health impairment increases, older adults utilize care from different types of caregivers, but little is known about changes in the composition of care networks. We mapped the transitions between different care networks to gain insight into which people develop care networks that include informal, privately and publicly paid care. We used three waves (2012-2015-2018) of the Longitudinal Aging Study Amsterdam with 1413 Dutch community-dwelling adults, aged 64-100. Network types were identified using six types of caregivers: (1) co-resident, (2) non-co-resident children, (3) other kin, (4) neighbours/friends/acquaintances, (5) publicly paid, (6) privately paid, in a latent transition analysis with mortality and moving to a care facility as missing states. Five types of care networks were identified: (1) no care, (2) privately paid, (3) mixed informal, (4) mixed publicly paid, (5) co-resident. The co-resident network was the most unstable and had a high transition rate to nursing homes. Participants from the privately paid care network often transitioned to a mixed informal network and rarely transitioned to a mixed publicly paid network. Transitions out of the no-care network were mostly to the privately paid network. The two mixed care networks were the most stable. Transitions appeared to be most triggered by deteriorating health. Transitions to institutional care were most likely in the mixed informal, mixed publicly paid and the co-resident network. Thus, these networks appear to require additional support to facilitate ageing in place.

How does long-term care impact the psychological wellbeing of older adults in different care policy contexts in the Netherlands?: A comparison of 1998, 2008 and 2018: A comparison of 1998, 2008 and 2018.

Receipt of long-term care (LTC) is generally associated with worse psychological wellbeing for community-dwelling older adults. In addition to objective features of care use (e.g. formal vs. informal care), the subjective evaluation of care provision in terms of perceived sufficiency might be particularly predictive of one's wellbeing but is seldomly considered in the literature. Substantial changes in the availability of long-term care in past decades raise the question to what extent these effects, if present, are consistent over historic time. The present study, therefore, aims at better understanding the associations between types of LTC use and perceived care sufficiency on psychological wellbeing in a changing LTC context in the Netherlands. Data from the Longitudinal Aging Study Amsterdam (LASA) were used from three points in time: 1998 (N = 582), 2008 (N = 459) and 2018 (N = 415). At each wave, participants were between 75 and 85 years of age and living independently. The results show that after adjusting for age, gender, education and health, using formal LTC had a negative effect on depressive symptoms only in 2018, but that this effect was not significantly worse compared to previous cohorts. Perceived care sufficiency was consistently negatively associated with depressive symptoms in all three points in time. This suggests that despite a less generous Dutch LTC system, psychological wellbeing among LTC users remains stable. Perceiving care provision as sufficient, however, can help older adults maintain psychological wellbeing and should be considered by researchers and policymakers that aim to improve care recipients' wellbeing.

Why do spouses provide personal care? A study among care-receiving Dutch community-dwelling older adults.

This study investigates under what conditions older spouses receive personal care from their spouse. Whether spousal care is provided is determined by individual and societal factors related to informal and formal care provision. Individual factors concern the need for care (the care recipient's health status), the spouse's ability to provide care (the spouse's health status) and the quality of the marital bond. Societal factors reflect changing policies on long-term care (indicated by the year in which care started) and gender role socialisation (gender). From the Longitudinal Aging Study Amsterdam, which completed eight observations between 1996 and 2016, we selected 221 independently living married respondents, aged 59-93, who received personal care for the first time and had at least one previous measurement without care use. The results show that if an older adult received personal care, the likelihood of receiving that care from the spouse decreased over the years: from 80% in 1996 to 50% in 2016. A husband or wife was less likely to receive spousal care when the spouse was unable to provide care or the quality of the relationship was low. No gender differences were found in either the prevalence of spousal care use or in the factors associated with that use. Thus, individual factors and the societal context seem to determine whether one receives personal care from their spouse. The decline in the likelihood of personal care provision from a spouse over the years may indicate a crumbling of family solidarity, an unmeasured and growing inability of the older spouse to provide care or an increasing complexity of care needs that requires the use of formal care. As care-giving can be a chronic stressor and most spouses provide care without assistance from others, attention from policy makers is needed to sustain the well-being of older couples.

Accessibility of health care experienced by persons with dementia from ethnic minority groups and formal and informal caregivers: A scoping review of European literature.

The number of persons with dementia from ethnic minority backgrounds is increasing. However, ethnic minority groups use health care services less frequently compared to the general population. We conducted a scoping review and used the theoretical framework developed by Levesque to provide an overview of the literature concerning access to health care for ethnic minority people with dementia and (in)formal caregivers. Studies mentioned barriers in (1) the ability to perceive a need for care in terms of health literacy, health beliefs and trust, and expectations; (2) the ability to seek care because of personal and social values and the lack of knowledge regarding health care options; and (3) lack of person-centered care as barrier to continue with professional health care. Studies also mentioned barriers experienced by professionals in (1) communication with ethnic minorities and knowledge about available resources for professionals; (2) cultural and social factors influencing the professionals' attitudes towards ethnic minorities; and (3) the appropriateness of care and lacking competencies to work with people with dementia from ethnic minority groups and informal caregivers. By addressing health literacy including knowledge about the causes of dementia, people with dementia from ethnic minorities and their informal caregivers may improve their abilities to access health care. Health care professionals need to strengthen their competencies in order to facilitate access to health care for this group.

Comparative study of two birth cohorts: did the explanatory role of behavioural, social and psychological factors in educational inequalities in mortality change over time?

OBJECTIVES: To investigate the contribution of behavioural, social and psychological factors to inequalities in mortality by educational level between birth cohorts. DESIGN: Cohort-sequential design. SETTING: Two population-based studies in the Netherlands: the Longitudinal Aging Study Amsterdam (LASA) and the Doetinchem Cohort Study (DCS). PARTICIPANTS: Data from the LASA included 1990 individuals with birth years 1928-1937 (cohort 1) and 1938-1947 (cohort 2) and, for replication, data from the DCS included 2732 individuals with birth years 1929-1941 (cohort 1) and 1939-1951 (cohort 2). METHODS: Years of education, 15-year mortality, lifestyle factors, social factors and psychological factors were modelled using multiple-group accelerated failure time models based on structural equation modelling to compare indirect effects between cohorts. RESULTS: Both studies showed similar educational inequalities, with higher mortality among those with lower education. The indirect effects of education via smoking (LASA: difference in survival time ratio (TR)=1.0018, 95% CI 1.0000 to 1.0155, DCS: TR=1.0051, 95% CI 1.0000 to 1.0183), physical activity (LASA: TR=1.0056, 95% CI 1.00009 to 1.0132) and alcohol use (LASA: TR=1.0275, 95% CI 1.0033 to 1.0194) on mortality were stronger in cohort 2 than in cohort 1. In contrast to the other effects, alcohol use was the only factor that was associated positively with education and survival time, which effect increased in the most recent cohort. Emotional support, network size and cognitive functioning showed no difference between cohorts. CONCLUSIONS: Smoking, physical activity and alcohol use contributed more to educational inequalities in mortality in recent cohorts. Hence, in addition to tackling fundamental social causes of inequality, policies focusing on intermediary mechanisms such as lifestyle need to adapt their targets to those that prove to be most important within a given time frame.

Associations of combining paid work and family care with gender-specific differences in depressive symptoms among older workers and the role of work characteristics.

OBJECTIVES: This study aims to provide insight into (i) how the combination of paid work and family care is longitudinally associated with gender-related differences in depressive symptoms and (ii) the role of work characteristics in this association. METHODS: Data were derived from STREAM, a Dutch prospective cohort study of older workers aged 45-64 years. Respondents were included if they were employed in at least one measurement between 2015 and 2017 (N=12 447). Mixed-models were applied to disentangle between-person (BP) and within-person (WP) effects of family caregiving on depressive symptoms. Analyses were stratified by gender. Work characteristics (social support, autonomy, emotional and mental workload) were separately added to the multivariable models. RESULTS: For older employees, family caregiving was positively associated with depressive symptoms between and within persons for both women [BP B=0.80, 95% confidence interval (CI) 0.52-1.08; WP B=0.32, 95% CI 0.08-0.56] and men (BP B=0.75, 95% CI 0.45-1.05; WP B=0.25, 95% CI 0.01-0.48). Social support at work reduced the adverse effect of family care on depressive symptoms for women (BP) and men (BP and WP). Emotional workload partly explained the effect of family care for both women and men (BP). CONCLUSIONS: The longitudinal association between family care and mental health was similar for male and female employees. Resources at work (ie, social support) could protect caregiving employees against depressive symptoms. More research is needed regarding the relative impact of the care context compared to the work context of working family caregivers.

Explaining the Gender Gap in the Caregiving Burden of Partner Caregivers.

Objectives: We examine gender differences in the experienced burden of partner caregivers using the stress-appraisal model. Gender differences can be explained by differences in conditions of burden (primary stressors, help from others, hours of caregiving, and secondary stressors) and how strong their effects are. Method: The data are from the Netherlands' Older Persons and Informal Caregivers Survey-Minimum Data Set (N = 1,611 caregivers). We examine mediation and moderation effects using structural equation modeling. Results: Women experience greater partner caregiver burden than men, which is related to women experiencing more secondary stressors (relational and financial problems, problems combining different tasks). For women and men alike, there is a positive association between burden and more primary stressors (partner's care need indicated by health impairment), help from other caregivers, and secondary stressors. For male caregivers, caregiving intensity also contributes to a greater burden. Discussion: This study corroborates the structural impact of gender on the conditions of as well as their effects on the partner caregiver burden. Reducing the hours of caregiving for male caregivers in severe care situations and helping female and male caregivers deal emotionally with the caregiving situation can reduce the partner caregiver burden.

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 Pearlin's 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.

Effects of own and spousal disability on loneliness among older adults.

OBJECTIVES: This study examines the effects of own and spousal disability on social and emotional loneliness among married adults aged 65 and older. METHOD: Data from 710 men and 379 women of a Dutch community sample were analyzed with linear regression analyses. RESULTS: For men, only their wives' disability was related to higher levels of social loneliness, whereas for women mainly their own disability was related to higher levels of social loneliness. Own disability and spousal disability were related to higher levels of emotional loneliness among both men and women. Effects of disability remained unaffected after controlling for characteristics of the social network and the marital relationship. DISCUSSION: Findings underscore the importance of considering effects of both spouses' health on measures of individual well-being. Also, the traditional division of social roles makes older married men relatively vulnerable to social loneliness when their wives suffer from disability.

A Groupware Tool to Facilitate Caregiving for Home-Dwelling Frail Older Persons in the Netherlands: Mixed-Methods Study.

BACKGROUND: Collaboration among informal and formal caregivers in a mixed care network of home-dwelling elderly may benefit from using a groupware app for digital networked communication (DNC). OBJECTIVE: This study aimed to describe and explain differences in the use and evaluation of a DNC app by members of the care network and to come up with a list of conditions that facilitate (or restrict) the implementation of a DNC app by a home care organization. METHODS: A pilot study collected information on digital communication in 7 care networks of clients of a home care organization in the Netherlands. Semistructured interviews with 4 care recipients, 7 informal carers (of which 3 spoke on behalf of the care receiver as well on account of receivers' suffering from dementia), 3 district nurses, 5 auxiliary nurses, and 3 managers were conducted 3 times in a period of 6 months. In addition, we observed relevant workshops initiated by the home care organization and studied log-in data created by the users of the DNC app. RESULTS: The qualitative data and the monthly retrieved quantitative log-in data revealed 3 types of digital care networks: arranging the care network, discuss the care network, and staying connected network. Differences between network types were attributed to health impairment and digital illiteracy of the care recipients, motivation of informal caregivers, and commitment of formal caregivers. The easy availability of up-to-date information, the ability to promote a sense of safety for the carers, and short communication lines in case of complex care situations were positively evaluated. CONCLUSIONS: It is concluded that digital communication is beneficial for organizing and discussing the care within a care network. More research is needed to study its impact on care burden of informal carers, on quality of care, and on quality of life of home-dwelling frail older adults.

Diversity in Older Adults' Care Networks: The Added Value of Individual Beliefs and Social Network Proximity.

Objectives: Policy reforms in long-term care require an increased share of informal caregivers in elderly care. This may be more feasible for older adults who (believe they) can organize the care themselves and have a local social network. This study describes care network types, how they vary in the share of informal caregivers, and examines associations with characteristics of community-dwelling older adults, including individual beliefs and network proximity. Method: Latent class analyses were applied to a subsample of older care receivers (N = 491) from the Longitudinal Aging Study Amsterdam, in order to identify homogeneous subgroups of people with similar care networks. Multinomial regression analysis explored associations between network type and care receiver characteristics. Results: Privately paid, coresidential, large informal, and publicly paid care network types were distinguished. Variation in informal care appeared mostly related to health, partner status, income, and proximity of children. Proximity of other potential informal caregivers did not affect the network type. Perceived control of care was highest in the privately paid network. Discussion: The results suggest that local (non-)kin could be mobilized more often in coresidential networks. Increasing informal or alternative care in publicly paid networks is less likely, due to limited social and financial resources.

Explanations of socioeconomic differences in changes in physical function in older adults: results from the Longitudinal Aging Study Amsterdam.

BACKGROUND: This study examines the association between socioeconomic status and changes in physical function in younger- (aged 55-70 years) and older-old (aged 70-85 years) adults and seeks to determine the relative contribution of diseases, behavioral, and psychosocial factors in explaining this association. METHODS: Data were from 2,366 men and women, aged 55-85 years, participating in the Longitudinal Aging Study Amsterdam (LASA). Two indicators of socioeconomic status were used: education and income. Physical function was measured by self-reported physical ability over nine years of follow-up. RESULTS: In older adults, low socioeconomic status was related to a poorer level of physical function during nine years of follow-up. In subjects who were between 55 and 70 years old, there was an additional significant socioeconomic-differential decline in physical function, while socioeconomic differentials did not further widen in subjects 70 years and older. Behavioral factors, mainly BMI and physical activity, largely explained the socioeconomic differences in physical function in the youngest age group, while psychosocial factors reduced socioeconomic status differences most in the oldest age group. CONCLUSION: The findings indicate age-specificity of both the pattern of socioeconomic status differences in function in older persons and the mechanisms underlying these associations.

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.