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.

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.

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.

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.

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.

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.

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.

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.

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.

Explaining the association between educational level and frailty in older adults: results from a 13-year longitudinal study in the Netherlands.

PURPOSE: The aim of this study was to examine the longitudinal association between educational level and frailty prevalence in older adults and to investigate the role of material, biomedical, behavioral, social, and mental factors in explaining this association. METHODS: Data over a period of 13 years were used from the Longitudinal Aging Study Amsterdam. The study sample consisted of older adults aged 65 years and above at baseline (n = 1205). Frailty was assessed using Fried's frailty criteria. A relative index of inequality was calculated for the level of education. Longitudinal logistic regression analyses based on multilevel modeling were performed. RESULTS: Older adults with a low educational level had higher odds of being frail compared with those with a high educational level (relative index of inequality odds ratio, 2.94; 95% confidence interval, 1.84-4.71). These differences persisted during 13 years of follow-up. Adjustment for all explanatory factors reduced the effect of educational level on frailty by 76%. Income, self-efficacy, cognitive impairment, obesity, and number of chronic diseases had the largest individual contribution in reducing the effect. Social factors had no substantial contribution. CONCLUSIONS: Our findings highlight the need for a multidimensional approach in developing interventions aimed at reducing frailty, especially in lower educated groups.

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.

Health problems and marital satisfaction among older couples.

OBJECTIVE: Older couples are likely to be confronted with health problems of both spouses and these health problems may negatively influence their marital satisfaction. The present study examined these possible negative effects using a dyadic perspective. METHOD: Data from 78 independently living older couples were analyzed using the Actor-Partner Interdependence Model (APIM). Health problems were modeled as a latent factor of functional disability, the number of chronic diseases, and self-rated health. The couple's health context, that is, similarity or dissimilarity, was examined with an actor-partner interaction variable. RESULTS: For wives, spousal health problems were negatively associated with their marital satisfaction, but only under the condition that their own health was relatively good. For husbands, neither own nor spousal health problems were associated with their marital satisfaction. DISCUSSION: Future research focusing on older couples needs to consider the couple's health context next to health at the individual level.

Nonkin in older adults' personal networks: more important among later cohorts?

OBJECTIVES: Research on age-related changes in personal networks has found compelling evidence for socioemotional selectivity theory and exchange theory holding that older adults experience a decline in less emotionally close nonkin relations as they age. However, recent societal developments are likely to have increased the salience of nonkin relations. We hypothesize that age-related decline in the proportion of nonkin in personal networks has been delayed or is slower in late birth cohorts of older adults compared with earlier cohorts. METHOD: Seven observations by the Longitudinal Aging Study Amsterdam covering a time span of 17 years since 1992 were analyzed using multilevel regression analysis. The sample had 12,949 person-year observations from 3,516 respondents born between 1908 and 1937. RESULTS: Age-related decline in the proportion of nonkin is absent for cohorts born after 1922 and large for cohorts born in 1922 and before. Mediating variables for health and other resources did not explain cohort differences in age-related change. DISCUSSION: The salience of nonkin relationships is likely to have increased due to societal changes, resulting in absence or delay of decline in later cohorts. The findings raise the need for a reevaluation of old age and the creation of new theoretical perspectives.

Positive and negative evaluation of caregiving among three different types of informal care relationships.

Based on the caregiver stress model, we examined how care demands, caregiver motivation, coping style and external support are associated with positive evaluation and caregiver burden among spousal, adult child and other types of care relations. Data from a sample of Dutch informal caregivers of 1,685 older persons (55 and older) were analyzed employing multivariate linear regression analyses for each of the care relationship types. Spouses (N = 206) report high positive evaluation and high burden, adult children (N = 1,093) report low positive evaluation, and other caregivers (N = 386) report high positive evaluation and a low burden. Multivariate linear regression analyses showed that motives and external support were important for positive evaluation but the impact varied among types of caregivers, whereas care demands and not asking for help were associated with burden for all types. Only among 'other' caregiver relationships, positive evaluation was negatively associated with burden. It is concluded that results confirm the dual nature of caregiving among spouses and children. The care context and motivation of the different types of caregivers explain their differences in care evaluation. Various interventions for types of caregivers are discussed.

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.

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.

Living arrangements among older people: an overview of trends in Europe and the USA.

This article compares the trends in living arrangements of older people in several European countries and in the United States. Trends and cross-country variability in several factors that could account for these cross-national differences, including marital status, fertility, labour force participation and attitudes, are also examined. In most countries the proportion of older people living alone increased substantially between 1970 and 1990. However the increase in living alone stabilised or even declined between 1990 and 2000 in most of the countries analysed indicating a possible reversal in the trend. Increases in proportions of older women who are married and reductions in the proportions childless may partially explain this. Considerable variability in both trends and levels of older people's living arrangements was seen especially between north-western and southern European countries. These variations mirrored contrasts in attitudes towards residential care and parent-child coresidence between the countries.

[Unequal chances for reaching 'a good old age'. Socio-economic health differences among older adults from a life course perspective]. / Ongelijke kansen op een goede oude dag. Sociaal-economische gezondheidsverschillen bij ouderen vanuit een levensloopperspectief.

This article provides an overview of the socioeconomic inequality in physical and psychological health of older adults between 55 and 85 years of age, with a focus on the older adults whose socioeconomic status (SES) remains at a low level all their life. Data are derived from 1471 men and 1568 women, participating in the Longitudinal Aging Study Amsterdam (LASA) in 1992/1993. Based on the parental and own level of education, respondents are divided in four categories: those with a life time low level of SES, those with downward or upward mobility in SES, and those with a life time high level of SES. Logistic regression analyses showed that older adults with upward SES mobility and life time high SES, had a lower risk for functional limitations, chronic diseases (men only), 6-year mortality, depression and loneliness, compared with the older adults with life time low SES. The disadvantaged position of the low SES persons with regard to age, health and psychosocial conditions explained the SES differences in depression, but SES differences in mortality (for men) and in functional disability (for men and women) are not explained by the risk factors under study. SES differences in loneliness were attributed to differences in psychosocial conditions. Lifestyle did not add to the explanation of any of the SES differences. There were only small differences between those with a life time low SES and those with downward mobility in SES. It is concluded that a low level of education (regardless of the parental level) contributes to restricted psychosocial conditions, health problems and low well-being in old age, thereby decreasing the chances for a 'good old age' considerably.