Receipt Of Informal Care Research Articles

Life satisfaction of informal care recipients: Findings from the German Ageing Survey.

Global judgements of life satisfaction are a core aspect of subjective well-being, and of central relevance to understanding how those in need of care view their lives. Therefore, this study aimed to investigate the association between the receipt of informal care and life satisfaction in a longitudinal setting. Longitudinal analysis of a population-based data set of community-dwelling individuals aged 40years and older. Data from the German Ageing Survey were used (Waves 2002, 2008, 2011, 2014). Fixed effects regression analysis was implemented to investigate the longitudinal association between receipt of informal care (no/yes) and life satisfaction (Satisfaction with Life Scale), while controlling for sociodemographic data (e.g., age) and health-related factors (e.g., physical and mental health). Results from fixed effects longitudinal models revealed that transitioning from not receiving informal care to receiving informal care predicted a decrease in life satisfaction. This result remained stable when specific types of receipt of informal care were used as predictors. Receiving informal care is associated with a decrease in life satisfaction, irrespective of the type of informal care received. These results highlight the necessity of taking the care recipient's perception into consideration, and indicate the imminent need for the care situation to be improved, if the life satisfaction of care recipients is to be maintained. Statement of contribution What is already known on the topic? In general, few studies investigate the care recipients' perspective regarding outcomes associated with the receipt of informal care. Particularly, studies on the association between receipt of informal care and life satisfaction, and especially longitudinal population-based studies, are rare. What does this study add? Evidence of a population-based longitudinal study in a sparsely investigated field of research Our longitudinal study found recipients of informal care to report reduced life satisfaction This negative association remained stable when investigating different tasks of informal care.

The impact of receiving informal care on self-esteem and its moderation by social class

Objectives: This longitudinal study aims to investigate the association between informal care receipt and self-esteem, and explore the influence of social class on this association.Method: Data from the German Ageing Survey (waves 2002, 2008, 2011, 2014; 7870 observations) drawn from community-dwelling individuals (aged 40 years and older) was used.Results: Results revealed that receiving care was not significantly associated with self-esteem. However, when the sample was stratified by social class, receipt of care was significantly associated with increased self-esteem in individuals from lower social classes (lower class, lower middle class). Moderator analysis demonstrated a significant interaction effect between belonging to the lower middle class and receipt of care.Conclusion: Our results demonstrate that care recipients can benefit from informal care regarding their self-esteem, at least if they are from lower social classes. This implies that informal care should be supported.

The Impact of Cognitive Impairment on Poststroke Outcomes: A 5-Year Follow-Up.

To explore the impact of cognitive impairment poststroke on outcomes at 5 years. Five-year follow-up of the Action on Secondary Prevention Interventions and Rehabilitation in Stroke (ASPIRE-S) prospective cohort. Two hundred twenty-six ischemic stroke survivors completed Montreal Cognitive Assessments at 6 months poststroke. Outcomes at 5 years included independence in activities of daily living, receipt of informal care, quality of life, and depressive symptoms. Data were analyzed using logistic and linear regression models. Adjusted odds ratios (ORs; 95% confidence interval [CI]) and β coefficients (95% CI) are reported. One hundred one stroke survivors were followed up at 5 years. Cognitive impairment at 6 months was independently associated with worse quality of life (B [95% CI]: -0.595 [-0.943 to -0.248]), lower levels of independence (B [95% CI]: -3.605 [-5.705 to -1.505]), increased likelihood of receiving informal care (OR [95% CI]: 6.41 [1.50-27.32]), and increased likelihood of depressive symptoms (OR [95% CI]: 4.60 [1.22-17.40]). Conclusion: Cognitive impairment poststroke is associated with a range of worse outcomes. More effective interventions are needed to improve outcomes for this vulnerable group of patients.

The role of social networks in using home care by older people across Continental Europe.

The diversification of caregiving arrangements in European societies has drawn attention to the factors that condition the use of care by older people. Social and family relations appear as a key factor, mainly to be related to the availability and accessibility to potential informal caregivers. Recent studies evidenced that geographical proximity and a larger social network increase the probability of receiving informal support in old age. However, the ways in which interpersonal relationships are associated with the use of formal care, as well as the cross-country variability of this association, have been barely explored. Using a sample of 37,708 individuals aged 65 and over from Wave 6 of the Survey of Health, Ageing and Retirement in Europe (SHARE), this study examines to what extent the characteristics of older people's social networks predict the use of three types of home care; formal, informal, or combined, exploring the cross-European convergences and divergences. Binomial logistic regressions are conducted to compare four macro-regions in continental Europe (northern countries: Denmark and Sweden; western countries: Austria, Belgium, France, Germany, Switzerland, and Luxembourg; southern countries: Italy, Spain, Greece, and Portugal; and eastern countries: Poland, Czech Republic, Slovenia, Estonia, and Croatia). The structure, availability, and accessibility to the members of the social network are the major predictors of the receipt of informal care everywhere. Regional divergences are observed regarding to formal care, alone or combined with informal caregivers.

The Protective Effects of Informal Care Receipt Against the Progression of Functional Limitations Among Chinese Older People.

This study investigates the impacts of receiving informal care on the progression of functional limitations among older people aged 60 and older in China. The data come from three waves of the China Health and Retirement Longitudinal Survey, which collected health- and aging-related information on a nationally representative sample of Chinese older people from 2011 to 2015. Multilevel regression models were used to analyze the data. The protective effect of receiving informal care is stronger for the first 2 years after the baseline survey and tends to fade away or be reversed 4 years later. The protective effect is stronger among older people receiving low-intensity informal care and is gradually weakened with an increase in care intensity. Trajectories of function capabilities are deeply embedded in social relationships. In the context of rapid population aging and increasing demand for informal care, government support for caregivers is needed to sustain the protective effects of informal care.

Social care and health outcomes in ageing: exploring measures of multimorbidity

BackgroundThe older population within developed countries is increasing, leading to increased pressure on health services. Most of this demographic have multiple conditions (multimorbidity), which is difficult to measure in a methodological context. In Scotland, efforts are being made to integrate health and social care under one body in order to provide a person-centred environment where older people with complex needs receive tailored care. In this context it is important to consider the effect of social care in conjunction with multimorbidity on health outcomes to target care provision.
 ObjectivesThis study intends to determine which is the best tool for predicting both mortality and care uptake amongst older people. The effect of care on mortality in conjunction with multimorbidity is also considered. This study also attempts to derive the best predictive model for both mortality and care uptake, using additional explanatory variables such as deprivation.
 MethodsThis quantitative longitudinal study uses a linked SMR admissions and social care census dataset from 2010-2015. It considers the impact of multiple measures of multimorbidity (such as ICD-10 flagged condition indices or prescription scores) on outcomes such as mortality, receipt of informal care or admissions using nested logistic regression models with summary statistics such as the AIC, BIC, R-squared and ROC curve.
 Projected resultsBased on literature, it is hypothesised that diagnosis-based indices (such as the Charlson Index) will perform best at predicting mortality, whilst prescription-based scores (such as the Chronic Disease Score) will perform best at predicting admissions.

Caregivers' Support Network Characteristics Associated with Viral Suppression among HIV Care Recipients.

Informal care receipt is associated with health outcomes among people living with HIV. Less is known about how caregivers' own social support may affect their care recipient's health. We examined associations between network characteristics of informal caregivers and HIV viral suppression among former or current drug using care recipients. We analyzed data from 258 caregiver-recipient dyads from the Beacon study, of whom 89% of caregivers were African American and 59% were female. In adjusted logistic regression analysis, care recipients had lower odds of being virally suppressed if their caregiver was female, was caring for youth involved in the criminal justice system, and had network members who used illicit drugs. Caregivers' greater numbers of non-kin in their support network was positively associated with viral suppression among care recipients. The findings reveal contextual factors affecting ART outcomes and the need for interventions to support caregivers, especially HIV caregiving women with high-risk youth.

Estimating Dementia and Receipt of Informal Care Using Behavioral Risk Factor Surveillance System Data.

Estimates of US adults with dementia differ widely and don't distinguish adults living in the community. Behavioral Risk Factor Surveillance System data from 120 485 households in 21 states that used a cognitive decline module in 2011 were used. Data for both respondents and other adults with subjective cognitive decline (SCD) were included through proxy responses. Using responses to questions about the receipt of informal care for their SCD and diagnosed dementia, estimates were made for each state. Overall, 2.9% (range: 1.5% in Tennessee to 5.3% in Arkansas) of all noninstitutionalized adults in these states received informal care for their SCD and 0.9% (range: 0.5% in Tennessee to 2.0% in Arkansas) were estimated to have dementia. Limiting results to respondents reduced estimates significantly. Combined results for respondents and nonrespondents from a representative telephone survey provide varying estimates of SCD-related measures across states, highlighting the need for state-specific estimates.

Receipt of Caregiving and Fall Risk in US Community-dwelling Older Adults.

Falls and fall-related injuries (FRI) are common and costly occurrences among older adults living in the community, with increased risk for those with physical and cognitive limitations. Caregivers provide support for older adults with physical functioning limitations, which are associated with fall risk. Using the 2004-2012 waves of the Health and Retirement Study, we examined whether receipt of low (0-13 weekly hours) and high levels (≥14 weekly hours) of informal care or any formal care is associated with lower risk of falls and FRIs among community-dwelling older adults. We additionally tested whether serious physical functioning (≥3 activities of daily living) or cognitive limitations moderated this relationship. Caregiving receipt categories were jointly significant in predicting noninjurious falls (P=0.03) but not FRIs (P=0.30). High levels of informal care category (P=0.001) and formal care (P<0.001) had stronger associations with reduced fall risk relative to low levels of informal care. Among individuals with ≥3 activities of daily living, fall risks were reduced by 21% for those receiving high levels of informal care; additionally, FRIs were reduced by 42% and 58% for those receiving high levels of informal care and any formal care. High levels of informal care receipt were also associated with a 54% FRI risk reduction among the cognitively impaired. Fall risk reductions among older adults occurred predominantly among those with significant physical and cognitive limitations. Accordingly, policy efforts involving fall prevention should target populations with increased physical functioning and cognitive limitations. They should also reduce financial barriers to informal and formal caregiving.

Receipt of informal care in the Chinese older population

ABSTRACTThis paper examines the factors affecting the receipt of informal care among older people in China. It uses the second wave data of the China Health and Retirement Longitudinal Survey, which collected ageing and health-related information on a nationally representative sample of 8,906 older people aged 60 and over in 2013. Apart from the factors that have been examined in the contexts of developed countries, the paper further investigates two factors specific to Chinese society: rural–urban residence and regular financial assistance from children. Based on binary and multinomial logit regression analyses, the research findings are threefold: the determinants of receiving informal care differ remarkably according to the sources of care; disability and living arrangements are the most important determinants; rural–urban residence plays a vital role in the Chinese context, but regular financial assistance from children makes little difference. It is estimated that 53 million older people are receiving informal care each year, a figure equivalent to the entire population of England. With continuous population ageing, Chinese society will face huge pressure to meet the demand for social care among older people in the future. The Chinese government needs to build a well-rounded welfare system that tackles this challenge from multiple dimensions. The formal care services should aim to complement informal care in the short run and reduce inequality in social care in the long run.

Associations between Physical Activity and Cognitive Functioning among Middle-Aged and Older Adults.

To describe aerobic physical activity among middle-aged and older adults by their self-reported cognitive decline and their receipt of informal care for declines in cognitive functioning and most common type of physical activity. Cross-sectional study using data from the 2011 Behavioral Risk Factor Surveillance System. Landline and cellular telephone survey. 93,082 respondents aged 45 years and older from 21 US states in 2011. Subjective cognitive decline (SCD) was defined as experiencing confusion or memory loss that was happening more often or getting worse during the past 12 months. Regular care was defined as always, usually, or sometimes receiving care from family or friends because of SCD. Using the 2008 Physical Activity Guidelines for Americans, respondents were classified as being inactive, insufficiently active, or sufficiently active based on their reported aerobic exercise. We calculated weighted proportions and used chi-square tests for differences across categories by SCD status and receipt of care. We estimated the prevalence ratio (PR) for being inactive, insufficiently active, and sufficiently active using separate log-binomial regression models, adjusting for covariates. 12.3% of respondents reported SCD and 23.1% of those with SCD received regular care. 29.6% (95%CI: 28.9-30.4) of respondents without SCD were inactive compared to 37.1% (95%CI: 34.7-39.5) of those with SCD who did not receive regular care and 50.2% (95%CI: 45.2-55.1) of those with SCD who received regular care. 52.4% (95%CI: 51.6-53.2) of respondents without SCD were sufficiently active compared to 46.4% (95%CI: 43.8-49.0) of respondents with SCD and received no regular care and 30.6% (95%CI: 26.1-35.6) of respondents with SCD who received regular care. After adjusting for demographic and health status differences, people receiving regular care for SCD had a significantly lower prevalence of meeting aerobic guidelines compared to people without SCD (PR=0.80, 95%CI: 0.69-0.93, p=0.005). The most prevalent physical activity was walking for adults aged ≥ 45 years old (41-52%) regardless of SCD status or receipt of care. Overall, the prevalence of inactivity was high, especially among people with SCD. These findings suggest a need to increase activity among middle-aged and older adults, particularly those with SCD who receive care. Examining ways to increase walking, potentially by involving informal caregivers, could be a promising way for people with SCD to reduce inactivity and gain the health benefits associated with meeting physical activity guidelines.

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.

Living on the Edge: Social Exclusion and the Receipt of Informal Care in Older People.

Older people have been identified as being at risk of social exclusion. However, despite the fact that care is commonly required in later life and the majority of that care is provided by informal carers, a connection between social exclusion and informal care-receipt has rarely been considered. The aim of this study was to examine how informal care-receipt is related to social exclusion. A face-to-face questionnaire survey on social exclusion and informal care-receipt was carried out among older people (n = 1255) living in Barnsley, United Kingdom. Multivariable analyses examined the association between social exclusion and categories of informal care-receipt: care-receiver; assurance-receiver; nonreceiver with no need; and nonreceiver with need. Compared to being a nonreceiver with no need, participants were more likely to be care-receivers or assurance-receivers if they had higher levels of social exclusion. The highest level of social exclusion, however, was found in nonreceivers with need. Despite a lack of informal care and support, formal practical support and personal care were also low in this latter group. Findings are discussed in relation to the conceptualisation of care-receipt and how contact with medical services could be an opportunity for identification and appropriate referral of nonreceivers with need.

Long-term care insurance: Does experience matter?

We examine whether long-term care (LTC) experience helps explain the low demand for long-term care insurance (LTCI). We test if expectations about future informal care receipt, expectations about inheritance receipt, and LTCI purchase decisions vary between individuals whose parents or in-laws have used LTC versus those who have not. We find parental use of a nursing home decreases expectations that one's children will provide informal care, consistent with the demonstration effect. Nursing home use by in-laws does not have the same impact, suggesting that individuals are responding to information gained about their own aging trajectory. Nursing home use by either a parent or in-law increases LTCI purchase probability by 0.8 percentage points, with no significant difference in response between parents’ and in-laws’ use. The estimated increase in purchase probability from experience with LTC is about half the previously estimated increase from tax policy-induced price decreases.

Preferences for professional versus informal care at end of life amongst African-American drug users with HIV/AIDS

With the advent of antiretroviral therapies, persons living with HIV/AIDS (PLHIVs) are living longer but with increased impairment and care needs. The purpose of this study was to assess whether a vulnerable population of PLHIVs preferred informal versus professional care when unable to care for themselves, and individual and support network factors associated with preference for informal care. The findings have potential implications for facilitating the population's informal care at end of life. Data were from the BEACON study, which examined social factors associated with health outcomes among former or current drug-using PLHIVs in Baltimore, MD. Structural equation modeling was used to identify individual and support network characteristics associated with PLHIVs' preference for informal (family or friends) compared to professional care. The structural equation model indicated preference for informal care was associated with female sex, greater informal care receipt, reporting one's main partner (i.e., boy/girlfriend or spouse) as the primary source of informal care, and a support network comprised greater numbers of female kin and persons supportive of the participant's HIV treatment adherence. Not asking for needed help to avoid owing favors was associated with preferring professional care. Findings suggest that interventions to promote informal end of life care should bolster supportive others' resources and skills for care provision and treatment adherence support, and should address perceived norms of reciprocity. Such intervention will help ensure community caregiving in a population with high needs for long-term care.

Mapping the Future of Family Care: Receipt of Informal Care by Older People with Disabilities in England to 2032

Many long-term care systems in economically developed countries are reliant on informal care. However, in the context of population ageing, there are concerns about the future supply of informal care. This article reports on projections of informal care receipt by older people with disabilities from spouses and (adult) children to 2032 in England. The projections show that the proportions of older people with disabilities who have a child will fall by 2032 and that the extent of informal care in future may be lower than previously estimated. The policy implications, in the context of the Dilnot Commission's report, are explored.

Caring for people at the end of life: How do cancer caregivers differ from other caregivers?

9128 Background: The size of the population in receipt of cancer care is growing as the population ages and grows, with many receiving outpatient care, living for longer and wishing to be cared for at home. Hence, cancer is now one of the most common health conditions in receipt of informal care giving. Methods: The South Australian Health Omnibus is an annual, face-to-face, cross-sectional, whole-of-population, multi-stage, systematic area sampling survey which seeks a minimum of 3,000 respondents each year state-wide. From 2000-2007, questions about end of life were asked. This study compares people who cared for someone with cancer until death (cancer caregivers) with caregivers of people with other life limiting illnesses (non-cancer caregivers). Results: 4,665/14,624 (31.9%; participation rate 71.6%) had someone close to them die from an “expected” death in the 5 years prior to being surveyed. One in 10 (10%; 1,504/14,624) provided hands-on (day-to-day or intermittent) care; the majority (79.5%) having cared for someone with cancer. Compared to non-cancer caregivers, cancer caregivers cared for someone who was significantly younger (mean age 66 vs 74 years; p&lt;0.0001), and to have had a palliative care service involved in the care of that person (64.9% vs 39%; p=0.000). Whilst not statistically significant, cancer caregivers were somewhat less likely to be the spouse of the person they cared for (11.8% vs 16.8%); more likely to be of non-English speaking background (11% vs 7.5%); more likely to report that the deceased was comfortable in the last 2 weeks of life (44.1% vs 31.7%); and prepared to care again for someone with a life-limiting illness (81.3% vs 71.4%). Conclusions: Caring for someone with cancer at the end of life appears to be fundamentally different to other caregiver populations, particularly in relation to age of, and relationship to, the patient, which may contribute to their substantially greater utilisation of palliative care services. Being a younger caregiver increases the likelihood of them caring again in the future.

Utilization and Costs of Health Care after Geriatric Traumatic Brain Injury

Despite the growing number of older adults experiencing traumatic brain injury (TBI), little information exists regarding their utilization and cost of health care services. Identifying patterns in the type of care received and determining their costs is an important first step toward understanding the return on investment and potential areas for improvement. We performed a health care utilization and cost analysis using the National Study on the Costs and Outcomes of Trauma (NSCOT) dataset. Subjects were persons 55-84 years of age with TBI treated in 69 U.S. hospitals located in 14 states (n=414, weighted n=1038). Health outcomes, health care utilization, and 1-year costs of care following TBI in 2005 U.S. dollars were estimated from hospital bills, patient surveys, medical records, and Medicare claims data. The subjects were further analyzed in three subgroups (55-64, 65-74, and 75-84 years of age). Unadjusted cost models were built, followed by a second set of models adjusting for demographic and pre-injury health status. Those in the oldest category (75-84 years) had significantly higher numbers of re-hospitalizations, home health care visits, and hours per week of unpaid care, and significantly lower numbers of physician and mental health professional visits than younger age groups (age 55-64 and 65-74 years). Significant age-related differences were seen in all health outcomes tested at 12 months post-injury except for incidence of depressive symptoms. One-year total treatment costs did not differ significantly across age categories for brain-injured older adults in either the unadjusted or adjusted models. The unadjusted total mean 1-year cost of care was $77,872 in persons aged 55-64 years, $76,903 in persons aged 65-74 years, and $72,733 in persons aged 75-84 years. There were significant differences in cost drivers among the age groups. In the unadjusted model index hospitalization costs and inpatient rehabilitation costs were significantly lower in the oldest age category, while outpatient care costs and nursing home stays were lower in the younger age categories. In the adjusted model, in addition to these cost drivers, re-hospitalization costs were significantly higher among those 75-84 years of age, and receipt of informal care from friends and family was significantly different, being lowest among those aged 65-74 years, and highest among those aged 75-84 years. Identifying variations in care that these patients are receiving and determining the costs versus benefits is an important next step in understanding potential areas for improvement.

Help from spouse and from children among older people with functional limitations: comparison of England and Finland

ABSTRACTFuture increases in need of old-age care warrant research on receipt of informal care among older people in different policy and cultural contexts. Separating informal care into help provided by spouse and by children may shed more light on dynamics of informal help, important in alleviating the demands on the formal sector. Using nationally representative data from England and Finland, we performed logistic regression analyses to study receipt of help from spouse and children among community-dwelling persons aged 70+ years with functional limitations. In both countries, women and those with more functional limitations had higher odds of receiving spousal and filial help. In England – but not in Finland – those receiving formal public help had lower odds of receiving spousal help than those with no formal help. Those with low education received more filial help in England, but no association was found between formal and filial help. In Finland, the effect of education was not significant but those receiving formal help had higher odds of also receiving filial help. The results suggest that in a liberal market-led state, the role of children may be to help their parents living alone and with low financial resources. In the context of a generous welfare state, children may function more as active agents bridging the gap between their parents and formal services.

Stigma, disclosure, and depressive symptoms among informal caregivers of people living with HIV/AIDS.

Informal care receipt is associated with better HIV treatment outcomes among patients vulnerable to treatment failure. Yet, informal caregiving can be highly stressful, leading to distress and cessation of caregiving. Research on factors contributing to informal caregivers' psychological distress may advance our understanding of how to improve caregivers' well-being and sustained HIV caregiving for a vulnerable population. We examined relationships among caregiver stigma, disclosure, and depressive symptoms in a cross-sectional sample of 207 informal caregivers of people living with HIV/AIDS (PLWHAs) in Baltimore, Maryland. Caregivers were primarily African American, low-income, urban adults participating in the Action, Resources, and Knowledge (ARK) study (2003-2005), which recruited urban PLWHAs and their main supporters. Results indicated that among caregivers, HIV caregiving-related stigma was associated with more depressive symptoms, while disclosure of caregiving status was associated with fewer symptoms. We also explored the buffering effect of disclosure in the relationship between stigma and depressive symptoms. Results indicated that among those who reported greater stigma, there was a significant decrease in depressive symptoms as the number of disclosures increased. In contrast, participants who indicated lower stigma had consistently fewer depressive symptoms regardless of number of disclosures. These results suggest the need for interventions to address high levels of depressive symptoms among informal HIV caregivers, particularly those who report greater caregiving stigma and less disclosure of their caregiver status. In addition, future research should examine these relationships further using longitudinal data from informal caregivers and their care recipients.