Formal Long-term Care Research Articles

Caregiving preferences and advance care planning among older adults living with HIV

ABSTRACTWith the increase in the US of the number of older adults living with HIV, more research is needed to understand the caregiving and advance care planning needs of this population. This descriptive study examined the relationship between social support and caregiving preferences and advance care planning. Older adults living with HIV were recruited from clinics in Los Angeles, CA and New Orleans, LA to complete cross-sectional surveys (n = 154). Logistic regression analyses were modeled to determine the characteristics associated with 1) preference for formal short-term term care, 2) preference for formal long-term care, 3) having at least one contact for emergency care, 4) having an advance directive or living will, and 5) having a healthcare proxy or agent. The mean age was 56.8 years. The majority of participants indicated a preference for informal support for both short-term (73.4%) and long-term care (66.2%), 13.2% had no one they could call for emergency care, 26.0% had an advance directive/living will, and 30.5% had a healthcare proxy/agent. In adjusted models, greater social support was associated with preference for informal short-term care and with having at least one emergency contact. Findings suggest that older adults living with HIV prefer informal sources of support for their caregiving needs despite having small social networks and individuals with limited social networks are particularly vulnerable due to lack of access to caregivers in sudden or unexpected health situations.

Excess costs of alcohol-dependent patients in German psychiatric care compared with matched non-alcohol-dependent individuals from the general population: a secondary analysis of two datasets

ObjectivesHeavy alcohol use can cause somatic and mental diseases, affects patients’ social life and is associated with social isolation, unemployment and reduced quality of life. Therefore, societal costs of alcohol...

Qualitative exploration of the experiences of informal care-givers for dependent older adults in Mexico City

AbstractPopulation ageing and increasing prevalence of chronic diseases and their consequences, changes in family structure and a decrease in the potential pool of family care, increase the need for formal long-term care for older adults in Mexico, and the need to understand the experiences of informal care-givers and how this impacts their social, family and personal conditions. This study investigates the experience of informal care-givers of dependent older adults using a cross-sectional qualitative study with an ethnographic focus. Thematic analysis was performed. The study comprised 48 semi-structured interviews with care-givers of dependent older adults who are beneficiaries of an in-home medical programme in Mexico City. The average age of care-givers was 54.7 years (standard deviation = 13.1, range = 24–86) and 75 per cent (36) were women. Results show care-giving experiences are diverse and complex, and profoundly affect the care-giver's life in terms of emotional burden, health deterioration and adverse life conditions due to economic deprivation. They also revealed key aspects such as the need to improve communication between care-givers and health-care personnel, the need for training about specific care needs and opportunity costs incurred. This information can serve as a basis for generating support strategies that may be integrated into the in-home programme. It is essential to promote actions that consider the ‘dependent older adult–informal care-giver’ dyad, and that aim to reduce the care-giving burden.

Caregiver needs and formal long-term care service utilization in the Andersen Model: An individual-participant systematic review and meta-analysis

The aims of this study were to (i) provide precision on the existence, magnitude and direction of the relationship between informal caregiver needs – burden, health status and depression, and formal long-term care service (LTCS) utilization, (ii) provide evidence to support caregiver training programmes, and (iii) propose a new model of factors for formal LTCS utilization. Electronic searches of major scientific databases such as MEDLINE and PsycINFO, and hand-searches of ProQuest were conducted. Studies were included if they used the Andersen Model to guide variables selection, collected data directly from caregivers, and had the use of at least one LTCS as a criterion variable. Studies that did not report data required for meta-analyses were excluded. Separate meta-analyses were conducted for each of the three predictors. The effect size was the magnitude difference in any one predictor between LTCS users and non-users. Pearson correlation coefficients were extracted or calculated for each study and combined using appropriate effects models. Of the 40 studies identified, 18 were excluded upon abstract screening and a further 14 were excluded upon full-text screening. Of the remaining seven studies, six were reported in journal articles, and one in a dissertation. Of these seven studies, four had American, one had Mexican American, one had Canadian, and one had Australian participants. The final sample included a total of 1,073 caregivers with a range of mean ages from 47.9 to 80.3 years. Using random effects models, the combined unadjusted Pearson rs between LTCS use and caregiver burden (n = 4), health (n = 3) and depression (n = 4) were modest – .08 (p = .003), .08 (p = .031), and .09 (p = .193) respectively. The confidence intervals were .03 to .13, .01 to .15, and -.08 to .25 respectively. The effect of caregiver burden on LTCS use was homogeneous, Q = 2.66, p = .448, I2 = 0.00%. The effect of caregiver health on LTCS use was also homogeneous, Q = 2.80, p = .247, I2 = 28.5%. The effect of depression on LTCS use, however, was heterogeneous, Q = 24.23, p Within the Andersen Model, higher caregiver burden and poorer caregiver health are related to a modest, albeit real, increase in LTCS use. Integrated LTCS design should consider the caregiver. Caregiver training programmes aimed at addressing caregiver burden and health status should be a part of LTCS. The Andersen Model, when expanded to include caregiver needs, is potentially a useful framework that may guide LTCS and integrated care utilization. Although the sample was small, this was the first systematic review and meta-analyses of the effect of self-reported caregiver needs - burden, health and depression - on LTCS use within the Andersen Model. The PRISMA-P adapted protocol of this unfunded study is available from the first author.

Care choices in Europe: To Each According to His or Her Needs?

Growing long-term care (LTC) needs represent a major challenge for our aging societies. Understanding how utilization patterns of different types of care are influenced by LTC policies or changes in the population composition such as age patterns or health can provide helpful insight on how to adequately prepare for this situation. To this aim, this paper explores how individuals choose between different forms of LTC. We exploit variation between countries as well as between individuals within countries using data from the Survey of Health, Ageing, and Retirement in Europe (SHARE). Using nonlinear decomposition techniques, we break down the difference in utilization rates between countries into differences based on observed sociodemographic and need-related characteristics and differences in the impacts of these characteristics, which allows us to identify the drivers behind differences in the formal-informal care mix. Our results show that a substantial fraction of the observed country differences can be explained by differences in impacts. We argue that this is a result of the different incentives provided by the different LTC systems.

The Kids are Alright - Labour Market Effects of Unexpected Parental Hospitalisations in the Netherlands

Unexpected negative health shocks may have serious consequences for labour force participation, not only for those who incur the shock but also for their family members. In particular, adult children may spend substantial time providing informal care and may incur stress-induced mental health problems following a parental health shock, which may in turn lead to reductions in labour supply. We link administrative data on labour market outcomes, hospitalisations and family relations for the full Dutch population for the years 1999-2008 to evaluate the effect of an unexpected parental hospitalisation on the probability of employment and on conditional earnings for the working age population. Using a difference-in-differences model combined with coarsened exact matching and individual fixed effects, we find no effect of an unexpected parental hospitalisation on either the probability of employment or conditional earnings for Dutch men and women, and neither for the full population nor for subpopulations most likely to become a caregiver. These findings suggest that the extensive public coverage of formal long-term care in the Netherlands provides sufficient opportunities to deal with adverse health events of family members without having to compromise one’s labour supply.

An Introductory Message from the Editor

Welcome to the first edition of a new 21st-century Initiative: Journal of Aging and Long-Term Care. We are most pleased and extremely grateful to announce that through the vision and generosity of Professor. Dr. Ismail Tufan who is currently the Chairperson of the Department of Gerontology at Akdeniz University in Antalya, Turkey that this new journal has been launched through the National Association of Social and Applied Gerontology (NASAG). The Ismail Foundation has assumed responsibility for the initial planning and allied costs associated with the introduction and sustainability of the new journal to be known as the Journal of Aging and Long-term Care (JALTC). With world societies facing rapid increases in their respective older populations, there is a need for new 21st century visions, practices, cultural sensitivities and evidenced-based policies that assist in examining topics about aging as well as balancing the tensions between informal and formal long-term care support and services. The JALTC is being launched as the official journal of the NASAG. The preceding journal aims to foster new scholarship contributions that address theoretical, clinical and practical issues related to aging and long-term care. It is intended that the JALTC will be first and foremost a multidisciplinary, interdisciplinary cross-cultural journal seeking to use research to build quality based public policies for long-term health care for older adults.

An Introductory Message from the Editor

Welcome to the first edition of a new 21st-century Initiative: Journal of Aging and Long-Term Care. We are most pleased and extremely grateful to announce that through the vision and generosity of Professor. Dr. Ismail Tufan who is currently the Chairperson of the Department of Gerontology at Akdeniz University in Antalya, Turkey that this new journal has been launched through the National Association of Social and Applied Gerontology (NASAG). The Ismail Foundation has assumed responsibility for the initial planning and allied costs associated with the introduction and sustainability of the new journal to be known as the Journal of Aging and Long-term Care (JALTC). With world societies facing rapid increases in their respective older populations, there is a need for new 21st century visions, practices, cultural sensitivities and evidenced-based policies that assist in examining topics about aging as well as balancing the tensions between informal and formal long-term care support and services. The JALTC is being launched as the official journal of the NASAG. The preceding journal aims to foster new scholarship contributions that address theoretical, clinical and practical issues related to aging and long-term care. It is intended that the JALTC will be first and foremost a multidisciplinary, interdisciplinary cross-cultural journal seeking to use research to build quality based public policies for long-term health care for older adults.

Long-term Care Provision and the Well-Being of Spousal Caregivers: An Analysis of 138 European Regions.

ObjectivesThe individual burden of caring for one’s relatives not only depends on care characteristics but is also related to contextual factors. The objective of this study is to determine whether regional formal long-term care provision is linked to the well-being of spousal caregivers introducing the concept of “control” as central pathway to explain this link.MethodWe applied multilevel analysis using data from the Survey of Health, Ageing and Retirement in Europe (SHARE) from over 29,000 Europeans and 1,800 spousal caregivers located in 138 regions in 11 countries to analyze the effects of regional contexts on caregiver well-being. The provision of formal care in a region was measured by the number of long-term care beds in nursing and residential homes among the older population.ResultsWe found that spousal caregivers’ well-being, measured in terms of life satisfaction, loneliness, and depression, was positively linked to the regional availability of formal care, which is partly due to higher perceived control in regions with more formal care provision.DiscussionOur results suggest that formal care supply is essential not only for care recipients but also for caregivers: perceived alternatives to the private care arrangement go along with greater well-being of informal caregivers.

Special issue on health economics and policy: Guest editors' introduction.

Special issue on health economics and policy: Guest editors' introduction.

Will you still need me, will you still feed me when I'm 64? The health impact of caregiving to one's spouse.

Informal care may substitute for formal long‐term care that is often publicly funded or subsidized. The costs of informal caregiving are borne by the caregiver and may consist of worse health outcomes and, if the caregiver has not retired, worse labor market outcomes. We estimate the impact of providing informal care to one's partner on the caregiver's health using data from the Survey of Health, Ageing, and Retirement in Europe. We use statistical matching to deal with selection bias and endogeneity. We find that in the short run caregiving has a substantial effect on the health of caregivers and, for female caregivers, on their health care use. These effects should be taken into account when comparing the costs and benefits of formal and informal care provision. The health effects may, however, be short‐lived, as we do not find any evidence that they persist after 4 or 7 years.

How to understand informal caregiving patterns in Europe? The role of formal long-term care provisions and family care norms.

Aims: Motivated by ageing populations, healthcare policies increasingly emphasize the role of informal care. This study examines how prevalence rates of informal caregivers and intensive caregivers (i.e. those who provide informal care for at least 11 hours a week) vary between European countries, and to what extent informal caregiving and intensive caregiving relate to countries’ formal long-term care provisions and family care norms. Methods: Multilevel logistic regression analyses on data from the European Social Survey Round 7 (n = 32,894 respondents in n = 19 countries) were used to test (a) contradicting hypotheses regarding the role of formal long-term care provisions based on crowding-out, crowding-in and specialization arguments and (b) the hypothesis that strong family care norms are positively related to (intensive) informal caregiving. Results: Prevalence rates of informal caregiving varied between European countries, from 20% to 44%. Intensive caregiving ranged from 4% to 11%. Opposite patterns regarding the role of formal long-term care provisions were revealed: generous long-term care provisions in a country were related to a higher likelihood of providing informal care, but a lower likelihood of providing intensive care. Moreover, intensive caregiving was more likely when family care norms in a country were strong. Conclusions: This study provided support for the specialization argument by showing that generous formal long-term care provisions crowded-out intensive caregiving, but also encouraged more people to provide (some) informal care. Because especially intensive caregiving is burdensome, low levels of formal long-term care provisions might bring risks to caregivers’ well-being and healthcare systems’ sustainability.

"We don't do it for the money" … The scale and reasons of poverty-pay among frontline long-term care workers in England.

Demographic trends escalate the demands for formal long-term care (LTC) in the majority of the developed world. The LTC workforce is characterised by its very low wages, the actual scale of which is less well known. This article investigates the scale of poverty-pay in the feminised LTC sector and attempts to understand the perceived reasons behind persisting low wages in the sector. The analysis makes use of large national workforce pay data and a longitudinal survey of care workers, as well as interviews with key stakeholders in the sector. The analysis suggests that there are at least between 10 and 13% of care workers who are effectively being paid under the National Minimum Wage in England. Thematic qualitative analysis of 300 interviews with employers, care workers and service users highlight three key explanatory factors of low pay: the intrinsic nature of LTC work, the value of caring for older people, and marketisation and outsourcing of services.

Effect of caregiving relationship and formal long-term care service use on caregiver well-being.

Despite efforts to revise the traditional long-term care (LTC) model, informal caregivers continue to provide a substantial amount of support to older adults as front-line care providers. The present study aimed to understand the effect of informal caregiving on caregivers' well-being in Singapore with respect to different types of patient-caregiver relationships. Second, this study examined the association between formal LTC service use and caregivers' well-being. Two waves of data for 781 dyads of patients with LTC needs and their caregivers from a longitudinal study were analyzed. Multilevel regression models were used to examine the association between caregivers' well-being (self-rated general health, stress level and quality of life) and LTC service use among different patient-caregiver relationships. Spousal caregivers reported significantly lower quality of life compared with adult children caregivers. Non-immediate family caregivers showed better overall well-being compared with spouse and adult children caregivers. Caregivers of patients referred to nursing homes reported higher levels of stress and poorer self-rated general health compared with caregivers of patients referred to community-based services. Spouse and non-immediate family caregivers of patients who utilized nursing home or home-based services presented poorer self-rated general health than caregivers of the patients who did not use any formal services. Developing a better understanding of the associations between well-being and formal LTC service use for different types of patient-caregiver relationships is critical for policy makers and healthcare providers who aim to create holistic systems of care. Geriatr Gerontol Int 2017; 17: 1714-1721.

"When I Said I Wanted to Die at Home I Didn't Mean a Nursing Home": Care Trajectories at the End of Life.

Background and ObjectivesLittle is known regarding the care trajectories older adults experience at the end of life (EOL). We drew on a structural/institutional life course perspective to examine the trajectories evident among older adults transitioning through the Canadian formal long-term care system. The sequence of care transitions as well as the impact of social location, social and economic resources, and health-related factors on these trajectories were examined.Research Design and MethodsTo identify EOL care trajectories, we used administrative data collected on older adults (aged 65+) who received publicly subsidized long-term care services (e.g., nursing home and home and community-based care) in one health region in British Columbia, Canada from January 1, 2008 through December 31, 2011 and who died by March 31, 2012 (n = 11,816). Multinomial logistic regression analyses assessed the impact of selected covariates on these trajectories.ResultsThe majority of those studied (65.4%) died outside of acute hospital settings. The most common trajectories involved transitions from home care to nursing home/residential care to non-hospital death (39.5%) and transitions from in-home care to hospital death (22.4%). These and other trajectories were shaped by social structural factors, access to social and economic resources, as well as health status and prior hospitalizations.Discussion and ImplicationsDespite calls for minimizing hospital-based deaths and maximizing home-based deaths, older LTC recipients often experience EOL care trajectories that end in death in a nursing home care setting. Our findings point to the value of a structural/institutional life course perspective in informing an understanding of who experiences this and other major EOL care trajectories. In doing so, they also provide direction for policy and practice designed to address inequalities and enhance the quality of EOL care.

Navigating Long-Term Care.

Americans over age 65 constitute a larger percentage of the population each year: from 14% in 2010 (40 million elderly) to possibly 20% in 2030 (70 million elderly). In 2015, an estimated 66 million people provided care to the ill, disabled, and elderly in the United States. In 2000, according to the Centers for Disease Control and Prevention (CDC), 15 million Americans used some form of long-term care: adult day care, home health, nursing home, or hospice. In all, 13% of people over 85 years old, compared with 1% of those ages 65 to 74, live in nursing homes in the United States. Transitions of care, among these various levels of care, are common: Nursing home to hospital transfer, one of the best-studied transitions, occurs in more than 25% of nursing home residents per year. This article follows one patient through several levels of care.

Psychological Health of Informal Caregivers of Patients with Long-Term Care Needs: Effect of Caregiving Relationship Types and Formal Long-Term Care Services Use

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 2.913 (2021 JCR, received in June 2022)The IJIC 20th Anniversary Issue was published in 2021.

Migrants\u2019 decision-process shaping work destination choice: the case of long-term care work in the United Kingdom and Norway

Escalating demands for formal long-term care (LTC) result in the reliance on migrant workers in many developed countries. Within Europe, this is currently framed by progressive European immigration policies favouring inter-European mobility. Using the UK and Norway as case studies, this article has two main aims: (1) to document changes in the contribution of European Union (EU) migrants to the LTC sectors in Western Europe, and (2) to gain further understanding of migrants’ decision-processes relating to destination and work choices. The UK and Norway provide examples of two European countries with different immigration histories, welfare regimes, labour market characteristics and cultural values, offering a rich comparison platform. The analysis utilizes national workforce datasets and data obtained from migrants working in the LTC sector in the UK and Norway (n = 248) and other stakeholders (n = 136). The analysis establishes a significant increase in the contribution of EU migrants (particularly from Eastern Europe) to the LTC sector in both the UK and Norway despite their different welfare regimes. The findings also highlight how migrant care workers develop rational decision-processes influenced by subjective perspectives of investments and returns within a context of wider structural migration barriers. The latter includes welfare and social care policies framing the conditions for migrants’ individual actions.

The socioeconomic within-gender gap in informal caregiving among middle-aged women: Evidence from a Japanese nationwide survey

Caregiving to older people with needs has been mainly dependent on informal care provision by female caregivers. Compared with the care burden gender gap, the within-gender gap in women's socioeconomic status (SES) has attracted less policy attention. We investigated the association between middle-aged women's SES and the likelihood of being a primary caregiver for elderly informal care, focusing on household income, women's marital status, work status, and educational background under the universal and public system of formal long-term care provision in Japan. We used repeated cross-sectional data from nationally representative household surveys conducted between 2010 and 2013 to obtain a sample of 2399 women aged between 40 and 60 years living in the same household as a care recipient. We conducted multiple logistic regression analysis to obtain odds ratios of being a primary caregiver in the household regressed on women's SES variables, adjusting for the characteristics of care recipients and household composition. The results showed that single women with lower education were likely to be primary caregivers when the care recipients had severe levels of care needs, whereas the association was null in the case of care recipients with milder conditions. The results indicated that women's low education and non-married status were related to a higher likelihood of becoming a primary caregiver of severely disabled elderly for reasons other than lower economic power.To emancipate socioeconomically vulnerable women from the care burden, a broader set of social, economic, and welfare policies are needed.

Careful in the Crisis? Determinants of Older People's Informal Care Receipt in Crisis-Struck European Countries.

Macroeconomic downturns can have an important impact on the receipt of informal and formal long-term care, because recessions increase the number of unemployed and affect net wealth. This paper investigates how the market for informal care changed during and after the Great Recession in Europe, with particular focus on the determinants of care receipt. We use data from the Survey of Health, Ageing and Retirement in Europe, which includes a rich set of variables covering waves before and after the Great Recession. We find evidence of an increase in the availability of informal care after the economic downturn when controlling for year and country fixed effects. This trend is mainly driven by changes in care provision of individuals not cohabiting with the care recipient. We also find evidence of several determinants of informal care receipt changing during the crisis - such as physical needs, personal wealth, and household structures. Copyright © 2016 John Wiley & Sons, Ltd.