Informal caregiver burden in dialysis care and how it relates to patients' health-related quality of life and symptoms.

Background: Informal caregivers play a crucial role in dialysis care but may experience significant burden, potentially affecting both caregiver and patient outcomes. Research on caregiver burden and health-related quality of life (HRQoL) and the relation to patient-reported outcomes (PROs) is lacking. Therefore, we aimed to (i) describe informal caregivers' experienced burden and HRQoL and (ii) investigate how these are related to dialysis patients' HRQoL and symptoms.

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.

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.

[Did the COVID-19 pandemic change the care situation of older adults?].

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.

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).

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).

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.

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.

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.

Socioeconomic pathways to inequalities in mental and functional health: a comparative study of three birth cohorts.

Background: Although the educational expansion is often seen as a mechanism that might reduce health inequalities, socioeconomic inequalities in health (SEIH) have persisted or increased over the past decades. Theories suggest that this persistence could be due to a changing role of education as a 'gatekeeper' to access other socioeconomic resources such as occupation and income that are also associated with health outcomes. To test this, we examine whether the mediating role of occupation and income in the education-health relationship differs between three cohorts of 55-64 year old adults.

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.

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).

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.

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.

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).

[Symposium The future of informal care].

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.

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.

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.

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.

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.

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.

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).

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).

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.

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.