The impact of community care on provision of informal care to homebound elderly persons

This study examined the impact of community care on informal care provided by family and friends to homebound elderly persons. Secondary analyses were conducted on data collected from clients at baseline, 9 months (N = 225), and 48 months (N = 76) after acceptance to community care and home-delivered meals programs. Analyses revealed a significant increase in the amount of formal services provided to both groups of clients at 9 months and to community care clients at 48 months. The increase was attributed to the large proportion of "new" or "supplementary" services provided by agencies. No significant decrease in the amount of service provided by informal caregivers was found. In addition, regression analyses demonstrated only a weak impact of formal service on informal care. Analysis of patterns of service provision for each client demonstrated that formal care supplemented rather than substituted for informal care significantly more often in both the 9- and 48-month samples. We conclude that formal care in general supplemented the efforts of informal caregivers, and that informal caregiving remained stable over time.     

Relationships between home care clients and their workers: implications for quality of care

In-depth interviews were conducted with 54 home care clients and their home health aides and personal care attendants. The interview data reveal that home care relationships tend to be both formal and informal, in that job responsibilities tend to be diffusely defined and home care workers often become involved in the "backstage" world of their clients. The study also suggests, however, that personal bonds may be problematic for both workers and clients. For workers there is the risk of exploitation; for clients, there is the potential for loss of control over their own care. The quality of relationships also affects quality of care.     

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.     

Informal caregivers and the risk of nursing home admission among individuals enrolled in the program of all-inclusive care for the elderly

PURPOSE: We sought to determine whether participants in the Program of All-Inclusive Care for the Elderly (PACE) with an informal caregiver have a higher or lower risk of nursing home admission than those without caregivers. DESIGN AND METHODS: We performed a secondary data analysis of 3,189 participants aged 55 years or older who were enrolled in 11 PACE programs during the period from June 1, 1990 through June 30, 1998. Cox proportional hazard models determined whether having any caregiver, as well as specific caregiver characteristics, such as either living separately from the enrollee, being over the age of 75 years, providing personal care, not reducing or quitting work to provide care, or not being a spouse, predicted time to nursing home admission. RESULTS: Fewer than half of the participants (49.4%) lived with a caregiver, and 12.4% had no caregiver. Individuals who lived with their caregiver were frailer than either those who lived separately or those without a caregiver. We measured frailty in terms of functional and cognitive status, incontinence, and multiple behavioral disturbances. The presence of a caregiver did not change the risk for institutionalization. None of the caregiver characteristics were associated with a higher risk of nursing home admission. IMPLICATIONS: Unlike individuals in the general population, participants in PACE who lack an informal caregiver are not at higher risk of institutionalization. Further research is required to ascertain whether PACE's comprehensive formal services compensate for the lack of informal caregiving in limiting the risk for institutionalization.     

How much is enough? Perspectives of care recipients and professionals on the sufficiency of in-home care.

PURPOSE OF THE STUDY: This study sought to increase knowledge about the impact of rater role on the assessment of in-home supportive care. The authors compared the perspectives of care recipients and professionals on one aspect of the broad concept of quality of care in home care-the sufficiency of the amount of care provided by informal and formal caregivers. DESIGN AND METHOD: Sufficiency of home care was assessed through concurrent elderly persons' self-report through telephone interview and nurse clinical report based on in-home interviews with the elder. Care was assessed in terms of the sufficiency of the amount of informal and formal assistance received to meet functional dependency needs. Statistical analyses compared the ratings of elder and professional. RESULTS: Professional ratings of the sufficiency of care were significantly lower than those of the elderly care recipients. From the perspective of both care recipients and professionals, sufficiency of care was significantly related to coresidence of elder and caregiver, and to caregiver health. IMPLICATIONS: Consistent with previous literature, rater role was found to influence the assessment of the sufficiency of in-home care. Researchers and providers should recognize that care recipient and professional ratings are not interchangeable.     

Aging in the United Kingdom and Europe—A Snapshot of the Future?

The implications for society of increasing life span to 120 years can only be guessed, but comparing the diversity of responses to aging in different countries may give insights into the possible effect. A European Union–funded study of the recipients of community care services in 11 European countries illustrates how such studies can help identify some of the issues.
The study, made possible by the availability of a multidimensional standardized assessment for community care, illustrates how diversity of social and political history and culture results in widely different patterns of dependency in those cared for at home, different levels of formal care, and informal caregiver burden.
There is wide variation in living arrangements, marital status, and dependency between countries. The average age of recipients of community care is approximately 82, regardless of the average age of the national population. In Italy, which has the oldest population in Europe, dependency in people supported at home in extended families is high, with little formal care and significant levels of informal caregiver burden. In contrast the Nordic countries have lower levels of dependency and greater proportions of people with no informal caregiver. In Germany, informal caregiver burden may be related to the regulatory mechanisms rather than dependency and levels of formal care.
With a life expectancy of 120, it will be these 80-year-olds who will be caring for their parents. Although humankind is resourceful, it will require a unified approach to aging to overcome the challenging diversity in our societies.     

Costs of informal care in a sample of German geriatric stroke survivors

Stroke is a leading cause of long-term disability. A large proportion of geriatric stroke survivors receive informal care. The assessment and monetary valuation of informal care should therefore constitute an essential part of any health economic analysis, but it is hardly measured in stroke caregiver studies. The aim of the current research was to estimate the amount of informal care provided by caregivers of stroke survivors aged 60 years and older and to calculate its economic value. Information about caregiving time in activities of daily living (ADL), instrumental activities of daily living (IADL), and supervision during the last 3 months was obtained from 122 caregivers by means of structured interviews. The proxy good method was applied for the monetary valuation of time. About 63 % of the stroke survivors in our sample were moderately cognitively impaired. The results showed that the majority of the main caregivers assisted in ADL and IADL. Supervision was delivered by 45.9 %. The median amount of help in ADL was 13.9, in IADL 22.2, and in supervision 13.9 h/week. The median overall amount of care was 42.8 h/week. Fifty percent were supported by additional persons (2.7 h/week). The mean overall costs of informal care were calculated at 2252 €/month. Our results reveal the high social and economic costs of informal care. The main burden of caregiving appears to be carried by the primary caregiver. Consequently, support and counseling of this group is important. Furthermore, caregiver interventions should be aimed at the mobilization of informal resources.     

Stability of informal long-term care

Driven by projections of increasing needs for long-term care coupled with changing social trends, fear of family abandonment of caregiving has persisted. Data from two longitudinal studies confirm that informal caregivers are not withdrawing their help. Not only were family and friends the first source of assistance, but they also continued to be the primary source of care over 10 years. Further, although the majority of elders retained the same primary caregiver, if there was a change, it was typically to a new informal caregiver in the next generation. Very few elders who remained in the community ceased receiving informal care or turned from informal care to formal services.     

Patterns and predictors of formal and informal care among elderly persons living in board and care homes

The purpose of this study was to investigate the patterns and predictors of formal and informal help among a sample of older persons living in board and care homes (N = 617). Formal helpers such as facility staff, service agencies, and community organizations were the most common providers of assistance, particularly for activities of daily living (ADLs; e.g., bathing, dressing, toileting) that required close and continual proximity. Informal helpers such as family members, friends, and other residents were most likely to assist with instrumental ADL (IADL) tasks such as shopping and getting around outside. The need for assistance with ADLs predicted the amount of formal ADL help received by residents, whereas both ADL need and the presence of mental illness predicted the amount of IADL help received from formal sources. In contrast, demographic factors such as gender and race, as well as the frequency of family contact, predicted the amount of informal help with IADL tasks. White residents, women, and those with frequent family contact were among those most likely to receive assistance from informal helpers. The results suggest the need to encourage the provision of informal assistance as well as the need to ensure the availability of sufficient staff and other formal helpers are available to provide formal care in these settings.     

Alzheimer's disease. The unpaid burden of caring

This study presents detailed estimates of the hours and cost of informal care provided to Alzheimer's disease patients in Northern California. Data were collected over 12 months from 93 community-residing patients and their caregivers and from 94 institutionalized patients and their caregivers. Patients residing in the community received an average of 286 hours per month of unpaid care, whereas institutionalized patients received 36 hours per month. Alternative methods of imputing informal costs are described. The annual value of informal care (in 1990 dollars) is $34,517 for the noninstitutionalized sample and $5,542 for the institutionalized sample. The determinants of informal caregiving were examined and compared in the two settings. The more cognitively impaired the individual, the higher the informal costs no matter what the residential setting. In an institutional setting, the younger the patient and caregiver, the higher the costs. If a caregiver is not a spouse, higher informal care costs were also found.     

Formal service provision and the care of the elderly at home in Ireland

Social and demographic trends in Ireland pose the need to develop our system of care for the elderly at home. Currently informal care is the principal source of care for dependent elderly people with institutional care acting as the main alternative, particularly when levels of dependency are high or where informal caring relationships break down or are not possible. Although the past two decades have witnessed the growth of formal community care services for the elderly there is still considerable scope for extending and refining these services and, in particular, for making them more relevant to heavily burdened informal carers. Substitutionality appears to be the governing principle with formal and institutional services tending to step in only when the informal system breaks down. The achievement of greater complementarity between the formal and informal caring systems and the re-focusing of institutional services to provide support for the community care system as a whole are the suggested priorities.     

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).     

Informal caregiver involvement and illness detection among cognitively impaired nursing home residents

BACKGROUND: The participation of informal caregivers in the care of nursing home (NH) residents has the potential to positively impact care, especially for cognitively impaired residents whose own ability to advocate for their care is often limited. This study examined relationships between the level of informal caregiver involvement (ICI) in the NH and the degree to which residents' common medical conditions were detected by facility staff. METHODS: One hundred pairs of cognitively impaired residents and their primary informal caregivers were enrolled from three facilities in the Baltimore, Maryland area. Data collection involved interviews with informal caregivers and facility staff, as well as a medical evaluation and chart review of residents. A measure of illness detection was created by comparing a medical examination of the resident with chart review information. ICI was measured via staff rating and informal caregiver self-report. RESULTS: Correlations between illness detection and ICI were significant, with r = -.46 (p <.001) and r = -.39 (p <.001), for staff rating and self-reports, respectively. In regression models taking into account resident characteristics (age, race, gender, comorbidities, payment status, duration of stay, and cognitive impairment) and facility differences, higher ICI and being female predicted higher rates of illness detection. CONCLUSIONS: Though the cross-sectional nature of the study prevents the analysis of causal relationships, the involvement level of informal caregivers in the NH care of cognitively impaired residents was statistically related to higher rates of illness detection. Ramifications for the role of informal caregivers in long-term care are discussed.     

Triply-diagnosed patients in the HIV/AIDS Treatment Adherence, Health Outcomes and Cost Study: patterns of home care use

Although AIDS is a chronic illness, little is known about the patterns and correlates of long-term care use among triply diagnosed HIV patients. We examined nursing and home care use among 1,045 participants in the HIV/AIDS Treatment Adherence, Health Outcomes and Cost Study, a multi-site study of HIV-positive patients with at least one mental health and one substance disorder. Patient interviews and medical record review data were used to examine the average monthly cost of nursing home, formal home and informal home care. Multinomial logit and two-part regression models were used to identify correlates of the use of formal and informal home care and the number of informal home care hours used. During the three months prior to baseline, 2, 7 and 23% of participants used nursing home, formal home and informal home care, respectively. Patients who were better-educated, had higher incomes, had Medicaid insurance (with or without Medicare coverage) and whose transmission mode was homosexual sex had higher regression-adjusted probabilities of receiving any formal home care; Latinos and physically healthier patients had lower probabilities. Women and patients who abused drugs or alcohol (but not both) were more likely to receive informal care only. Overall, patients who were female, better-educated, physically or mentally sicker or single-substance abusers were more likely to receive any home care (either formal or informal), while those contracting HIV through heterosexual sex were less likely. Women received 28 more monthly hours of informal care than men and married patients received 31 more hours than unmarried patients. We conclude that at least one mutable policy factor (Medicaid insurance) is strongly associated with formal home care use among triply diagnosed patients. Further research is needed to explore possible implications for access among this vulnerable subpopulation.     

Informal costs of dementia care: estimates from the National Longitudinal Caregiver Study.

OBJECTIVES: The purpose of the study was to examine on a national level the informal costs of caring for elderly community-dwelling male veterans with dementia by female caregivers and the relationships between informal costs and disease severity, and between informal costs and dementia problem behaviors. METHODS: Female primary caregivers were drawn from the first wave (N = 2043) of the National Longitudinal Caregiver Study, a survey of informal caregivers of elderly male veterans diagnosed with probable Alzheimer's disease or vascular dementia. Cost measures include the following four items: value of caregiving time, caregiver's lost income, out-of-pocket expenditures for formal caregiving services, and caregiver's excess health costs. Disease severity was indexed by the number of impairments in activities of daily living. Patient's problem behaviors were measured using the Behavior Rating Scale-Dementia. RESULTS: The annual cost of providing informal care to elderly community-dwelling veterans with dementia was estimated to be $18,385 per patient in 1998. The larger components of this cost are caregiving time ($6,295) and caregiver's lost earnings ($10,709). All aspects of costs increase with disease severity and problem behavior. Most of this cost increase derives from the increased caregiving time required for the provision of physical care. DISCUSSION: This study provides a comprehensive estimate of the excess costs that result from providing informal dementia care in the community. Unlike previous studies, our estimates excluded costs that caregivers would have incurred if they had not been caregivers. Therefore, results reported here reflect only costs due to informal dementia care.     

Direct care workers' response to dying and death in the nursing home: a case study

OBJECTIVES: This paper is based on research that explored the cultural construction of dying and death in nursing homes and assisted living facilities in a large Northeastern city. It focuses on direct care workers' responses to elders' dying and death within the facility. METHODS: Data were gathered in a multiyear, multisite study through formal ethnographic interviews, informal conversations, and on-site observations of staff members. RESULTS: We introduce the case of Jayson, an activities director in a for-profit nursing home. We show how his belief system and experiences outside the facility, especially those concerning dying and death, shape his view of the nature and content of his work and his reaction to residents' deaths. DISCUSSION: We suggest caretaking at the intersection of gender, race, socioeconomic status, and the inside and outside life of direct care workers as topics for future research.     

Preference for long-term care arrangement and its correlates for older Korean Americans

OBJECTIVE: Care preference is important for both client's satisfaction and quality of life in long-term care. This study examines preference for long-term care arrangement and its correlates for older Korean Americans. METHODS: Data on two disability scenarios of hip fracture and stroke from a cross-section survey of 144 older Korean Americans were used to examine preferred care arrangement in terms of caregiver and care location, using multinomial logistic regression. RESULTS: Respondents expressed stronger preferences for "all informal" or "mixed" care arrangement for hip fracture scenario, but they preferred "all formal" care arrangement in the stroke scenario. Traditional value significantly decreased the odds of choosing "all formal" or "mixed" over "all informal" care arrangement. But Medicaid coverage and an independent decision-making style increased the odds of choosing "all formal" instead of "all informal" care arrangement. DISCUSSION: This study discusses the need for assessment of care preference and culturally appropriate long-term care services for minority elders.     

Resident outcomes of Medicaid-funded community residential care

PURPOSE: Washington State's initiatives to increase the availability and quality of community residential care presented an opportunity to describe clients entering adult family homes, adult residential care, and assisted living and to identify outcomes of care. DESIGN AND METHODS: We enrolled 349 residents, 243 informal caregivers, and 299 providers in 219 settings. We conducted interviews at enrollment and 12 months later, and we collected data from state databases. RESULTS: The average resident was a 78 year old woman reporting dependence in two of six activities of daily living. Residents in adult family homes demonstrated significantly more disability. Seventy-eight percent of residents survived at the 12-month follow-up. In analyses that controlled for differences at enrollment, residents in the three types of settings were very similar in health outcomes at follow-up. IMPLICATIONS: State policies should reflect the wide range of needs of residents seeking care in these settings. Choices among type of setting can be based on the match of needs to individual preferences.     

Predicting caregiver burden and depression in Alzheimer's disease

OBJECTIVES: The purpose of this study was to investigate the predictors of caregiver burden and depression, including objective stressors and mediation forces influencing caregiving outcomes. METHODS: This investigation is based on the 1994 Canadian Study of Health and Aging (CSHA) database. Participants were 613 individuals with dementia, living in either the community or an institution, and their informal caregivers. Participants for the CSHA were identified by screening a large random sample of elderly persons across Canada. Structural equation models representing four alternative pathways from caregiving stressors (e.g., functional limitations, disturbing behaviors, patient residence, assistance given to caregiver) to caregiver burden and depression were compared. RESULTS: The data provided the best fit to a model whereby the effects on the caregiver's well-being are mediated by appraisals of burden. A higher frequency of disturbing behavior, caring for a community-dwelling patient, and low informal support were related to higher burden, which in turn led to more depressive symptomatology. Caregivers of patients exhibiting more disturbing behaviors and functional limitations received less help from family and friends, whereas those whose care recipients resided in an institution received more informal support. DISCUSSION: Our findings add to the preexisting literature because we tested alternative models of caregiver burden using an unusually large sample size of participants and after overcoming methodological limitations of past research. Results highlight the importance of the effective management of disturbing behaviors, the provision of formal services for caregivers with highly impaired patients and no informal support, and the improvement of coping skills in burdened caregivers.