Longitudinal changes in the amount of informal care among publicly paid home care recipients

PURPOSE: This study examined how the amount of informal care received by disabled elders changes when they are receiving publicly paid home care, and whether formal service use, disability, caregiving arrangements, and demographic characteristics of older adults predict changes in the amount of informal care. DESIGN AND METHODS: Hierarchical linear models were estimated, using 3-year data (12 repeated observations) collected from elderly participants (N = 888) in Michigan's Home- and Community-Based Medicaid Waiver Program. RESULTS: The amount of informal care declined in the beginning period when publicly paid home care was received, and then it stabilized. Changes in activities and instrumental activities of daily living and caregiver residence predicted changes in the amount. The living arrangement and age of elders predicted different patterns of change over time. Neither formal service amount nor its change significantly predicted the amount of informal care. IMPLICATIONS: Informal caregivers do not relinquish caregiving when publicly paid home care is available. Expanding community-based long-term care is a means of fostering partnerships between formal and informal caregivers.     

End-of-life care: findings from a national survey of informal caregivers

BACKGROUND: Family and friends are thought to be the predominant providers of end-of-life care, although nationally representative data on this topic have been lacking. METHODS: This study draws from the 1999 National Long-Term Care Survey and its Informal Caregivers Survey to characterize primary informal caregivers' experiences providing end-of-life care to chronically disabled community-dwelling older adults. Study participants were 1149 primary informal caregivers, stratified by care recipients' survival or death during the following 12 months. RESULTS: An estimated 11.2% of the chronically disabled community-dwelling older adults died within 1 year of being interviewed. Among persons who died, 72.3% were receiving help from an informal caregiver at the time of the interview. End-of-life primary informal caregivers helped an average of 43 hours per week, 84.4% provided daily assistance, and caregiver support services were infrequently used (ie, respite care and support groups were used by less than 5% of caregivers). While end-of-life caregivers reported significant emotional (28.9%), physical (18.4%), and financial (14.0%) strains, more than two thirds endorsed personal rewards related to their helping role. Compared with primary informal caregivers of persons who survived the following 12 months, end-of-life caregivers provided significantly higher levels of assistance and reported more challenges and strains, but they were no less likely to endorse rewards related to their helping role. CONCLUSIONS: End-of-life caregivers provide frequent and intense assistance with few supportive services. These data underscore the relevance of families to end-of-life care, and the potential benefit of better integrating families in patient care.     

Gender differences in access to community-based care: a longitudinal analysis of widowhood and living arrangements

Persistent inequalities in access to community-based support limit opportunities for independent living for older people with care needs in Europe. Our study focuses on investigating how gender, widowhood and living arrangement associate with the probability of receiving home and community-based care, while accounting for the shorter-term associations of transitions into widowhood (bereavement) and living alone, as well as the longer–term associations of being widowed and living alone. We use comparative, longitudinal data from the Survey of Health, Ageing and Retirement in Europe (collected between 2004 and 2015 in 15 countries) specifying sex-disaggregated random-effects within-between models, which allow us to examine both cross-sectional and longitudinal associations among widowhood, living arrangements and community-based care use. We find widowhood and living alone are independently associated with care use for both older women and men, while bereavement is associated with higher probability of care use only for women. Socio-economic status was associated with care use for older women, but not for men in our sample. The gender-specific associations we identify have important implications for fairness in European long-term care systems. They can inform improved care targeting towards individuals with limited informal care resources (e.g. bereaved older men) and lower socio-economic status, who are particularly vulnerable to experiencing unmet care needs. Gender differences are attenuated in countries that support formal care provision, suggesting gender equity can be promoted by decoupling access to care from household and family circumstances.Supplementary InformationThe online version contains supplementary material available at 10.1007/s10433-022-00717-y.     

Three year functional changes and long-term mortality hazard in community-dwelling older men

BackgroundLow levels of physical function have been associated with higher mortality hazard in older persons. However, few studies have investigated the association between functional changes and subsequent mortality. This study aimed to examine whether 3-year functional changes independently predict subsequent all-cause mortality.MethodsThis population-based cohort study included 171 community-dwelling men aged ≥ 71 years at wave 2 (baseline of the present analysis), living in the semi-rural community of Merelbeke (Belgium). Physical function assessments included the Short Form-36 (SF-36) Physical Function Index, Grip strength, Chair rising, and Timed Up and Go. Changes over a 3-year time were calculated using data obtained at four annual visits.ResultsAfter a 15-year follow-up, 149 men (87%) died. Median survival time was 8.2 (4.2–12.4) years. Physical function assessed at a single time point (at wave 2 or wave 5) was significantly associated with subsequent mortality hazard, independently from future or preceding 3-year changes. Greater functional declines during the 3-year follow-up were associated with higher mortality hazards. These associations were 1) more pronounced within the first seven years, 2) independent from baseline age, polypharmacy, depression, disability, and physical function, and 3) no longer significant when closure physical function was taken into account.ConclusionPhysical function assessed at a single time point is a robust predictor of all-cause long-term mortality in community-dwelling older men. Yet, repeated assessments of physical function can provide prognostic information beyond that available from single initial assessment. However, with repeated assessments, most prognostic information can be found in the final assessment of physical function.     

Estimating the Quantity and Economic Value of Family Caregiving for Community-Dwelling Older Persons in the Last Year of Life

OBJECTIVES: To estimate the quantity and economic value of informal care provided to older persons during their final year of life in the community.
DESIGN: Retrospective analysis of publicly available nationally representative survey data.
SETTING: This retrospective study used data from the Health and Retirement Study, a nationally representative, longitudinal study of community-dwelling older people.
PARTICIPANTS: Older people who died between 2000 and 2002.
MEASUREMENTS: Data were extracted from the 2002 "exit survey" and linked with characteristics of caregivers from the helper file. Ordinary least squares regression was used to estimate hours of informal caregiving for community-dwelling older people (N=990). Adjusted hours were multiplied by the 2002 national average home aide wage ($9.16 per hour). Sensitivity tests were performed using the 10th percentile wage rate ($6.56) and 90th percentile wage rate ($12.34).
RESULTS: Older people who died in the community received on average 65.8 hours per week of informal care in the last year of life. The estimated economic value ranges from $22,514 to $42,351, which is equivalent to the annual direct replacement cost with a home aide in 2002.
CONCLUSION: Family members provide substantial assistance during the last year of life for older people who die in the community. If the informal care provided in the last year of life is replaced with a home aide, the total economic value for the United States would be approximately $1.4 billion (in 2002).     

Place of death and associated gender difference in Korea 2006–2014: Evidence from exit interviews of the Korean Longitudinal Study of Ageing

Previous research has revealed that many people wish to die at home; however, most die in healthcare institutions. This study explored factors related to the place of death and gender differences in this regard among older adults in South Korea. Participants included older adults from the Korean Longitudinal Study of Ageing. Multinomial logistic regression was used to examine relationships between place of death and relevant factors. Most older adults died in hospitals, followed by at home and in assisted living residences. Hospital and assisted living residence deaths increased while home deaths decreased. In both men and women, higher daily living dependency increased the probability of dying in an assisted living residence. Women were more likely to die in assisted living residences than men, and for persons living in urban areas, there was a decreased likelihood of home death only in women. Findings support that end-of-life care is performed mostly by institutions in Korea and there are gendered patterns. To achieve aging in place, the place of death and community-based terminal care should be more considered when implementing long-term care policies.     

Incidence of and predictors for chronic disability in activities of daily living among older people in Taiwan.

OBJECTIVES: To estimate the incidence of chronic activities of daily living (ADL) disability and to analyze the sociodemographic, health status, adverse lifestyle, and leisure-time physical activity predictors for chronic ADL disability. DESIGN: We recruited a cohort of community-dwelling older people in Taipei, Taiwan, who were not ADL disabled in August 1993, and we followed them until August 1996. SETTINGS AND PARTICIPANTS: The study subjects were 1321 community-dwelling people aged 65 years or older who were ADL intact at the initial interview in August 1993. The study sample was a subset of a probability sample (n = 1583) randomly selected from household registrations in the four districts of the Taipei metropolitan area. MEASUREMENTS: Baseline information regarding various factors potentially associated with the development of chronic ADL disability was assessed and collected at the beginning of the study. Study participants were assessed annually for ADL function by a structured home interview using a six-item scale. Participants who were unable to perform independently at least one of the six items--eating, bathing, dressing, toileting, transfers, and walking inside the house--for more than 3 months were considered chronically ADL disabled. Cox proportional hazard regression models were utilized to examine the independent effect of the potential predictors on risk of chronic ADL disability. RESULTS: During the 3-year study period, 145 (11.0%) participants developed chronic ADL disability, 58 (4.4%) participants were lost to follow-up, and 83 (6.3%) participants died. Multiple hazard regression analysis showed that individuals aged 70 to 79 years or older than age 80 had increased risk of ADL disability (relative risk: 2.05 (95% confidence interval (CI), 1.35-3.11) and 3.89 (95%CI, 2.33-6.50), respectively) compared with those participants younger than age 70. Risk of chronic ADL disability was inversely associated with routine exercise (RR = 0.52; 95% CI, 0.39-0.68). CONCLUSIONS: Age is the most significant predictor of chronic ADL disability. Lack of routine exercise is also a significant predictor of ADL disability in older adults.     

Low serum micronutrient concentrations predict frailty among older women living in the community

BACKGROUND: Micronutrient deficiencies are common among older adults. We hypothesized that low serum micronutrient concentrations were predictive of frailty among older disabled women living in the community. METHODS: We studied 766 women, aged 65 and older, from the Women's Health and Aging Study I, a population-based study of moderately to severely disabled community-dwelling women in Baltimore, Maryland. Serum vitamins A, D, E, B(6), and B(12), carotenoids, folate, zinc, and selenium were measured at baseline. Frailty status was determined at baseline and during annual visits for 3 years of follow-up. RESULTS: At baseline, 250 women were frail and 516 women were not frail. Of 463 nonfrail women who had at least one follow-up visit, 205 (31.9%) became frail, with an overall incidence rate of 19.1 per 100 person-years. Compared with women in the upper three quartiles, women in the lowest quartile of serum carotenoids (hazard ratio [HR] 1.39; 95% confidence interval [CI], 1.01-1.92), alpha-tocopherol (HR 1.39; 95% CI, 1.02-1.92), and 25-hydroxyvitamin D (HR 1.34; 95% CI, 0.94-1.90) had an increased risk of becoming frail. The number of nutritional deficiencies (HR 1.10; 95% CI, 1.01-1.20) was associated with an increased risk of becoming frail, after adjusting for age, smoking status, and chronic pulmonary disease. Adjusting for potential confounders, we found that women in the lowest quartile of serum carotenoids had a higher risk of becoming frail (HR 1.54; 95% CI, 1.11-2.13). CONCLUSIONS: Low serum micronutrient concentrations are an independent risk factor for frailty among disabled older women, and the risk of frailty increases with the number of micronutrient deficiencies.     

Prognostic value of disability on mortality: 15-year follow-up of the Bambuí cohort study of aging

BackgroundDisability is a concern in the context of population ageing. The extent of an individual’s disability is a major determinant of whether or not they require long-term care or survival time. We investigated the effect of three disability domains as predictors of all-cause mortality over 15-year follow-up in a Brazilian socioeconomically disadvantaged and multiracial older adult population.MethodsWe estimated Cox proportional hazards models using data from 1333 community-dwelling individuals aged 60 and older from the Bambuí Cohort Study of Ageing. Disability was defined as a great difficulty or not being able to perform one and two or more activities in each domain: mobility, instrumental activities of daily living (IADL) and basic activities of daily living (BADL).ResultsThe overall mortality rate was 46.1 per 1000 person-years at risk (pyrs) and it was higher in men. Among men, the fully adjusted Hazard Ratios (HRs) were 1.92 (95%CI: 1.43-2.58), 2.07 (95%CI: 1.53-2.79) and 1.65 (95%CI: 1.11-2.45), and among women 1.75 (95%CI: 1.38-2.21), 1.43 (95%CI: 1.11-1.84) and 1.43 (95%CI: 1.05-1.95), for two or more disability in mobility tasks, IADLs and BADLs, respectively, compared to those with no difficulty or some difficulty to perform all the tasks.ConclusionA similar risk of death for mobility, IADL and BADL in both genders was found, suggesting that any of these domains can be used to identify risk of all-cause mortality among older adults. The number of activities with limitations in each domain was an important factor.     

Differences in amount of informal care received by non-Hispanic whites and latinos in a nationally representative sample of older Americans

The objective of this study was to evaluate informal (unpaid) care and its broad determinants for Latinos in a nationally representative sample. A cross-sectional analysis of the 1993 Asset and Health Dynamics Study, a national probability sample of 7,443 older adults aged 70 and older, was performed to determine the independent effect of Latino ethnicity on the receipt of informal care by disabled older individuals. Self-reported race/ethnicity was used to predict the mean daily hours of informal care received for activity of daily living (ADL) or instrumental activity of daily living (IADL) assistance after adjustment for predisposing, need, and enabling variables. There was a significant association between informal home care and ethnic group, with 44.3% of Latinos receiving informal care, compared with 33.9% of African Americans and 24.6% of non-Hispanic whites (P<.001). After adjustment, Latinos received 11.0 weekly hours of informal care, compared with 7.5 hours for non-Hispanic whites and 6.3 hours for African Americans (P<.001). The results from this nationally representative sample indicate that Latinos receive significantly more hours of informal care on average than African Americans or non-Hispanic whites for ADL and IADL disability. Clinicians should be alert to the significant amount of informal care and possible associated strain in caregivers of older Latinos.     

Unmet care needs and key outcomes in dementia

OBJECTIVES: To determine how unmet needs for activity of daily living tasks influenced nursing home placement, death, or loss to follow-up in dementia. DESIGN: An 18-month longitudinal design, with interviews administered every 6 months. SETTING: Eight catchment areas in the United States. PARTICIPANTS: Five thousand eight hundred thirty-one dementia patients and their caregivers were included at baseline. MEASUREMENTS: Measures of sociodemographic context of care; functional, cognitive, and behavioral status of care recipients; caregiver stress and well-being; and formal and informal resources served as covariates. The independent variables of interest were unweighted unmet care need scores and unmet need scores weighted by importance and severity in a prior sample of older consumers of long-term care. Outcomes included nursing home placement, death, and loss to follow-up. RESULTS: Cox regression models suggested that greater unmet need was predictive of nursing home placement, death, and loss to follow-up. These results were apparent when the unweighted and the weighted scores for unmet need with activity of daily living dependencies were used. CONCLUSION: Unmet need may be useful in identifying dementia care recipients at risk for nursing home placement and death. Further study of unmet need is needed to effectively assess and target intervention protocols during the course of dementia.     

Day care service use is associated with lower mortality in community-dwelling frail older people

OBJECTIVES: To clarify the association between day care service use and 21-month mortality in community-dwelling frail older people. DESIGN: Prospective cohort study (the Nagoya Longitudinal Study for Frail Elderly). SETTING: Community-based. PARTICIPANTS: One thousand six hundred seventy-three community-dwelling older people (540 men, 1,133 women). MEASUREMENTS: Data included the clients' demographic characteristics; depression as assessed using the short version of the Geriatric Depression Scale; a rating for basic activities of daily living (ADLs); comorbidity; number of prescribed medications and physician-diagnosed chronic diseases; use of home-care services, including day care, visiting nurse, and home-help services; and number of regular medical checkups. Survival analysis of 21-month mortality was conducted using Kaplan-Meier curves and multivariate Cox proportional hazards models. RESULTS: Of the 1,673 participants, 726 were day care service users at baseline, and 268 (94 day care service users, 174 nonusers) died during the 21-month follow-up. Multivariate Cox regression models adjusting for potential confounders showed that day care service use was associated with reduction in mortality. Subgroup analysis demonstrated that day care service use was associated with less risk of mortality in subjects who were female; were in the youngest age group (65-74); had higher ADL scores, lower comorbidity, depression, no dementia; and used a visiting nurse service. Participants using day care service two and three times or more a week had 63% or 44% lower relative hazard ratios, respectively, than participants not using the service. CONCLUSION: Among community-dwelling frail older people, day care service use two or more times per week was associated with 44% to 63% lower 21-month mortality.     

Healthcare utilization of elderly persons hospitalized after a noninjurious fall in a Swiss academic medical center

OBJECTIVES: To determine the risk of hospital readmission, nursing home admission, and death, as well as health services utilization over a 6-month follow-up, in community-dwelling elderly persons hospitalized after a noninjurious fall. DESIGN: Prospective cohort study with 6-month follow-up. SETTING: Swiss academic medical center. PARTICIPANTS: Six hundred ninety persons aged 75 and older hospitalized through the emergency department. MEASUREMENTS: Data on demographics and medical, physical, social, and mental status were collected upon admission. Follow-up data were collected from the state centralized billing system (hospital and nursing home admission) and proxies (death). RESULTS: Seventy patients (10%) were hospitalized after a noninjurious fall. Fallers had shorter hospital stays (median 4 vs 8 days, P<.001) and were more frequently discharged to rehabilitation or respite care than nonfallers. During follow-up, fallers were more likely to be institutionalized (adjusted hazard ratio=1.82, 95% confidence interval=1.03-3.19, P=.04) independent of comorbidity and functional and mental status. Overall institutional costs (averaged per day of follow-up) were similar for both groups ($138.5 vs $148.7, P=.66), but fallers had lower hospital costs and significantly higher rehabilitation and long-term care costs ($55.5 vs $24.1, P<.001), even after adjustment for comorbidity, living situation, and functional and cognitive status. CONCLUSION: Elderly patients hospitalized after a noninjurious fall were twice as likely to be institutionalized as those admitted for other medical conditions and had higher intermediate and long-term care services utilization during follow-up, independent of functional and health status. These results provide direction for interventions needed to delay or prevent institutionalization and reduce subsequent costs.     

Depression among recipients of informal care: the effects of reciprocity, respect, and adequacy of support

OBJECTIVES: The objective of this work was to examine the relationship of perceived quality of care to depression among recipients of informal long-term care. METHODS: Generalized estimating equations were used to generate population-average logistic regression models of prevalent depression, using a sample of 420 disabled community-dwelling women aged 65 or older receiving informal care obtained from the Women's Health and Aging Study Caregiving Survey. RESULTS: Findings confirm a substantial prevalence of depression among older women with disabilities and support the hypothesis that perceived reciprocity and respect afforded by one's primary caregiver as well as adequacy of instrumental support all were associated with a lower likelihood of being categorized as depressed, even after controlling for sociodemographic, health, and psychosocial characteristics that are known to be related to depression. DISCUSSION: Perceived quality of informal care arrangements has a bearing on the psychological health of care recipients. Individuals in more reciprocal relationships and in relationships where they felt respected and valued were less likely to be depressed than their counterparts.     

The longitudinal relationship between the use of long-term care and depressive symptoms in older adults

PURPOSE: The aim of this study was to estimate the longitudinal relationship between transitions in the use of long-term care and older adults' depressive symptoms and to investigate whether this relationship could be explained by markers of older adults' underlying health, or other variables including demographics, personality, and partner status. DESIGN AND METHODS: Data were from the Longitudinal Aging Study Amsterdam, which consists of a random, community-based sample of 3,107 older Dutch people (55-85 years of age) stratified by age and gender. The use of informal care, professional home care, and institutional care was recorded, and respondents were screened on depressive symptoms. Follow-up measurements took place at 3 and 6 years. RESULTS: Longitudinal analyses showed significant associations between the enduring use of professional long-term care and an increase in depressive symptoms. Transitions to professional home care or institutional care were also associated with considerably more depressive symptoms after 3 years, whereas transitions from professional home care or institutional care to no care or informal care only were not associated with a change in depressive symptoms. Most of the associations remained significant after indicators of underlying health and other covariates were adjusted for, and also after the data were reanalyzed for respondents with and without functional limitations. IMPLICATIONS: This study does not involve a controlled experiment of professional long-term care among older adults. However, the findings suggest the possibility that receiving professional long-term care could introduce new stressors and increase the risk of depressive symptoms. Our analyses illuminate the concerns of elders regarding their use of professional long-term care and may help in planning for more effective delivery of this type of care.     

Projected use of long-term-care services by enrolled Veterans

PURPOSE: The purpose of this article is to describe the projected use for long-term-care services through 2012. DESIGN AND METHODS: We constructed a static-component projection model using age, function, and other covariates. We obtained enrollee projections from the Veterans Health Administration (VHA) and combined these with nursing home and community long-term-care service use rates from the 1999 National Long-Term Care Survey and the 2000 National Health Interview Survey. RESULTS: Over the next decade, the number of oldest veterans (aged 85+) will double, and VHA-enrolled veterans aged 85 and older will increase sevenfold. This will result in a 20-25% increase in use for both nursing home and home- and community-based services. VHA currently concentrates 90% of its long-term-care resources on nursing home care. However, among those who receive long-term care from all formal sources, 56% receive care in the community. Age and marital status are significant predictors of use of either type of formal long-term-care service for any given level of disability. VHA's experience with the mandatory nursing home benefit suggests that even when the cost to the veteran is near zero, only 60-65% of eligibles will choose VHA-provided care. Assisted living represents nearly 15% of care provided during the past decade to individuals in nursing homes, and approximately 19% of veterans using nursing homes have disability levels comparable to those of men supported in assisted living. IMPLICATIONS: As most of the increased projected use for long-term care will be for home- and community-based services, VHA will need to expand those resources. Use of VHA resources to leverage community services may offer new opportunities to enhance community-based long-term care.     

Long-term outcome for patients and carers following hospital admission for stroke.

Outcome was assessed in 82 3(+)-year survivors from a cohort of 229 patients admitted to hospital with acute stroke; 71% were independent or only mildly disabled, 76% were living at home. Institutionalized patients were significantly older, less often married, and had more cognitive impairment than those at home. No patient who produced normal picture drawings (house, man, clock) was in institutional care, only two patients living alone had abnormal drawings. Of patients at home 39% had not seen their general practitioner (GP) in the last 6 months. GPs were less likely to see patients who were more severely disabled (p less than 0.05). Targeting of services seemed poor, there was no relationship between level of dependence and level of support from voluntary or statutory services. Forty-four of 49 chief informal carers were also interviewed; 30% showed marked strain. Carers had more problems with emotional reactions, sleep and social isolation than expected.     

A randomized, controlled trial of tai chi for the prevention of falls: the Central Sydney tai chi trial

OBJECTIVES: To determine the effectiveness of a 16-week community-based tai chi program in reducing falls and improving balance in people aged 60 and older. DESIGN: Randomized, controlled trial with waiting list control group. SETTING: Community in Sydney, Australia. PARTICIPANTS: Seven hundred two relatively healthy community-dwelling people aged 60 and older (mean age 69). INTERVENTION: Sixteen-week program of community-based tai chi classes of 1 hour duration per week. MEASUREMENTS: Falls during 16 and 24 weeks of follow-up were assessed using a calendar method. Balance was measured at baseline and 16-week follow-up using six balance tests. RESULTS: Falls were less frequent in the tai chi group than in the control group. Using Cox regression and time to first fall, the hazard ratio after 16 weeks was 0.72 (95% confidence interval (CI)=0.51-1.01, P=.06), and after 24 weeks it was 0.67 (95% CI=0.49-0.93, P=.02). There was no difference in the percentage of participants who had one or more falls. There were statistically significant differences in changes in balance favoring the tai chi group on five of six balance tests. CONCLUSION: Participation in once per week tai chi classes for 16 weeks can prevent falls in relatively healthy community-dwelling older people.     

The ankle-brachial index is not related to mortality in elderly subjects living in nursing homes

Low ankle-brachial index (ABI) levels are associated with increased risk of all-cause and cardiovascular mortality in middle-aged and older adults. We evaluated the association between low ABI and all-cause and cardiovascular mortality in elderly patients living in nursing homes. In 632 subjects (mean age 82.1 +/-7.4 years, 137 men) living in 3 municipal nursing homes, ABI, prevalent cardiovascular diseases, and conventional risk factors were evaluated at baseline in 1998. After a 3-year follow-up the relation between a low ABI and mortality outcomes was evaluated by using multivariable Cox proportional hazards analysis. A low ABI (<0.90) was observed in 177 participants (28%). After 3 years, 304 subjects (48.1%) died; death occurred in 53.6% of those with low ABI and in 45.9% of those with normal ABI. No significant relation between low ABI and all-cause (hazard ratio [HR] 1.1, 95% confidence interval [CI] 0.7-2.0) or cardiovascular mortality (HR 1.3, 95% CI 0.8-2.1) was observed. Among elderly patients living in nursing homes, there is a high prevalence of low ABI, which is not related to all-cause and cardiovascular mortality.