Caregivers of frail elders: updating a national profile

PURPOSE: Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time. DESIGN AND METHODS: Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time. RESULTS: The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement. IMPLICATIONS: In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years.     

Elder disability as an explanation for racial differences in informal home care

PURPOSE: Adjusting for sociodemographic characteristics and disability levels, this study examines whether differences exist in the structure and function of community-dwelling Black and White frail elders' informal care networks. DESIGN AND METHODS: Data from in-person assessments of Michigan's Home and Community-Based Medicaid Waiver applicants were analyzed by using logistic and ordinary least squares regression. The sample consisted of 936 Black and 3,182 White frail elderly persons. RESULTS: When sociodemographic characteristics were controlled for, racial differences were found in all informal care components except out-of-home chores. Differences in functional components (amount of care, scope of assistance, and personal care) were largely accounted for by disability, whereas racial differences in the structural components (source of care, living arrangement, and sole caregiver) and in-home chores were not. IMPLICATIONS: Findings suggest that Blacks are not better off than Whites in the receipt of informal care. Although Black elders receive more informal help, this difference is primarily because Blacks are more disabled. This study calls for heightened awareness of disability among low-income Blacks and the potential burden experienced by their caregivers.     

Informal caregiver characteristics and subsequent hospitalization outcomes among recipients of care

BACKGROUND AND AIMS: It is reasonable to surmise that informal caregivers might influence access and use of health services among disabled older adults, although this relationship has not been well studied. The objective of this research was to examine caregiver attributes with respect to recipients' hospitalization experiences. METHODS: Generalized estimating equations were used to generate population-average logistic regression models for the risk of incurring inpatient hospitalization or being delayed in discharge from hospital. Data come from a sample of 420 women aged 65 or older receiving informal care, who participated in both the Women's Health and Aging Study and its accompanying Caregiving Survey. RESULTS: Individuals whose primary caregivers were characterized by feelings of competence in their role were 40% more likely to experience an inpatient hospitalization (p<0.05) but 48% less likely to be delayed in discharge from the hospital (p<0.05). Measures related to caregiver overload and personal gain were not found to be related to the likelihood of either incurring an inpatient admission or being delayed in hospital discharge, although individuals whose primary caregivers were characterized by role captivity (a measure related to perceived burden) were more than twice as likely to be delayed in discharge from the hospital (p<0.05) without controlling for other characteristics (p<0.10 in the multivariate model). Individuals whose primary caregivers reported being involved with recipients' medical professionals were 50% more likely to incur an inpatient hospitalization (p<0.01). CONCLUSION: These findings suggest that primary caregiver attributes have relevance to recipients' hospitalization experiences.     

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.     

Impact of informal care levels on discontinuation of living at home in community-dwelling dependent elderly using various community-based services

The aim of the study was to examine the effect of informal care levels on overall discontinuation of living at home, all-cause death, hospital admission, and long-term care placement for community-dwelling older people using various community-based services during a 3-year period. Prospective cohort study of 1582 community-dwelling disabled elderly and paired informal caregivers was conducted. Baseline data included the recipients and caregivers’ demographic characteristics, comorbidities, informal care levels (sufficient, moderate, and insufficient care), which were evaluated by trained visiting nurses, and the level of formal community-based service use. Among 1582 participants, 97 died at home, 692 were admitted to hospitals, 318 died during their hospital stay, and 117 were institutionalized in long-term care facilities during 3 years of follow-up. A multivariate Cox hazard model demonstrated that when compared with a sufficient informal care level, an insufficient informal care level was associated with overall discontinuation of living at home, all-cause mortality, hospitalization, and institutionalization during 3 years of follow-up (hazard ratio: 1.65, 95% confidence interval: 1.15-2.36; 1.98, 1.17-3.34; 1.56, 1.04-2.35; 2.93, 1.25-6.86, respectively). The results suggested that informal caregiving is an important factor in the prevention of overall discontinuation of living at home in a population of disabled older people.     

Caregiver burden and depression among informal caregivers of HIV-infected individuals

BACKGROUND: Few studies have examined the factors associated with depression in informal caregivers of HIV-infected persons. OBJECTIVE: To investigate the relationship between depression and caregiver burden among informal caregivers of HIV-infected individuals. DESIGN: Cross-sectional study using baseline data from an ongoing randomized trial of a supportive telephone intervention. PARTICIPANTS: One hundred seventy-six dyads of HIV patients and their informal caregiver. MEASUREMENTS: Depression was defined as a Beck Depression Inventory >10. A Caregiver Strain Index >6 identified informal caregivers with a high caregiver burden. We used logistic regression to identify characteristics that were associated with depression in the informal caregiver. RESULTS: Informal caregivers were 42 years old (SD, 13), 53% female, 59% nonwhite, and 30% had education beyond high school. Forty-seven percent of informal caregivers were the patient's partner, 18% a friend, and 35% a family member. Twenty-seven percent of informal caregivers had a high caregiver burden, and 50% were depressed. We found significantly greater odds of informal caregiver depression with high caregiver burden (OR, 6.08; 95% CI, 2.40 to 15.4), informal caregiver medical comorbidity besides HIV (OR, 2.32; 95% CI, 1.09 to 4.92), spending all day together (OR, 3.92; 95% CI, 1.59 to 9.69), having to help others besides the HIV patient (OR, 2.55; 95% CI, 1.14 to 5.74), and duration of the HIV patient's diagnosis (OR, 1.01 per month; 95% CI, 1.00 to 1.01). CONCLUSIONS: High caregiver burden was strongly associated with depression among HIV-infected individuals' informal caregivers, who themselves had difficult life circumstances. Informal caregivers of HIV patients may be in need of both mental health services and assistance in caregiving.     

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.     

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).     

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.     

Informal caregiving for diabetes and diabetic complications among elderly americans

OBJECTIVES: Little is known regarding the amount of time spent by unpaid caregivers providing help to elderly individuals for disabilities associated with diabetes mellitus (DM). We sought to obtain nationally representative estimates of the time, and associated cost, of informal caregiving provided to elderly individuals with diabetes, and to determine the complications of DM that contribute most significantly to the subsequent need for informal care. METHODS: We estimated multivariable regression models using data from the 1993 Asset and Health Dynamics Among the Oldest Old Study, a nationally representative survey of people aged 70 or older (N = 7,443), to determine the weekly hours of informal caregiving and imputed cost of caregiver time for community-dwelling elderly individuals with and without a diagnosis of DM. RESULTS: Those without DM received an average of 6.1 hr per week of informal care, those with DM taking no medications received 10.5 hr, those with DM taking oral medications received 10.1 hr, and those with DM taking insulin received 14.4 hr of care (p <.01). Disabilities related to heart disease, stroke, and visual impairment were important predictors of diabetes-related informal care. The total cost of informal caregiving for elderly individuals with diabetes in the United States was between $3 and $6 billion per year, similar to previous estimates of the annual paid long-term care costs attributable to DM. DISCUSSION: Diabetes imposes a substantial burden on elderly individuals, their families, and society, both through increased rates of disability and the significant time that informal caregivers must spend helping address the associated functional limitations. Future evaluations of the costs of diabetes, and the cost-effectiveness of diabetes interventions, should consider the significant informal caregiving costs associated with the disease.     

Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

Background  Traditional approaches to advance care planning (ACP) have many limitations; new approaches are being developed with the goal of improving end-of-life care. Objective  To understand how the end-of-life care experiences of older patients and their caregivers can inform the development of new approaches to ACP. Design  Qualitative cross-sectional study. Participants  Caregivers of community-dwelling persons age ≥ 60 years who died with advanced cancer, chronic obstructive pulmonary disease, or heart failure during follow-up in a longitudinal study. Approach  In-depth interviews were conducted 6 months after the patient’s death with 64 caregivers. Interviews began with open-ended questions to encourage the caregiver to tell the story of the patient’s experiences at the end of life. Additional questions asked about how decisions were made, patient–caregiver, patient–clinician, and caregiver–clinician communication. Main Results  Although the experiences recounted by caregivers were highly individual, several common themes emerged from the interviews. These included the following: 1) the lack of availability of treatment options for certain patients, prompting patients and caregivers to consider broader end-of-life issues, 2) changes in preferences at the very end of an illness, 3) variability in patient and caregiver desire for and readiness to hear information about the patient’s illness, and 4) difficulties with patient–caregiver communication. Discussion  The experiences of older patients at the end of life and their caregivers support a form of ACP that includes a broader set of issues than treatment decision-making alone, recognizes the dynamic nature of preferences, and focuses on addressing barriers to patient–caregiver communication. Presented at the 2006 annual meeting of the American Geriatrics Society. Supported by grant PCC 02–192 from VA HSR&D, R01 AG19769 from the National Institute on Aging, and a Paul Beeson Physician Faculty Scholars Award. Dr. Fried is supported by K24 AG28443from the National Institute on Aging.     

Families of Alzheimer's victims. Family support to the caregivers

This study examined the instrumental and social-emotional support provided by families to the primary caregivers of Alzheimer's patients. It was anticipated that the more adequate the support provided by the family, the less sense of burden and the better the coping effectiveness of the caregiver. Ratings of instrumental assistance, social-emotional support, adequacy of support, and coping effectiveness were made by trained raters from transcribed interviews with 23 primary caregivers. Also, a second family member who was usually next closest of kin to the caregiver was interviewed in order to provide another perspective of the support the family provided. While the major caregiving tasks were performed by the primary caregiver, the types of assistance from family that seemed most appreciated were visits and having persons stay with the patient so that the caregiver could take a trip, rest, run errands, or get out of the house for social activities. The majority of caregivers felt a high degree of support from their families and reported low levels of emotional upset resulting from family support efforts. The most common family problems reported were lack of visits, disagreement over level of patient's mental and physical functioning, and disagreement over the type of care required. The data confirmed the hypothesis that family support was positively associated with the caregiver's coping effectiveness. In addition, caregivers who did not receive enough support were most burdened; however, the group receiving the greatest amount of support was the next most burdened, a finding which was unanticipated.(ABSTRACT TRUNCATED AT 250 WORDS)     

Genderaspekte in der Angehörigenpflege

Most people in need of care and assistance are currently still being cared for at home by family members. The majority of family caregivers are women. However, the percentage of men assuming the role of main caregiver at home is increasing. This may point to a change in the distribution of caregiving within the family. The health-related and social stresses and strains affecting cargiving persons also show gender-specific differences and are experienced more frequently and with a higher intensity by female caregivers than caregiving men. Men approach the challenge of caring differently to women and also organize care differently to female family caregivers. Although a high percentage of those providing informal care to family members at home are now men, this fact is hardly appreciated by society. In the specialist literature, caring men are often seen from the perspective of women. This article aims to portray gender-specific perspectives concerning the situation of providing informal care and assistance to elderly people and the stresses and strains that are associated with it.     

Determining care management activities associated with mastery and relationship strain for dementia caregivers

OBJECTIVES: To identify specific care management activities within a dementia care management intervention that are associated with 18-month change in caregiver mastery and relationship strain.
DESIGN: Exploratory analysis, using secondary data (care management processes and caregiver outcomes) from the intervention arm of a clinic-level randomized, controlled trial of a dementia care management quality improvement program.
SETTING: Nine primary care clinics in three managed care and fee-for-service southern California healthcare organizations.
PARTICIPANTS: Two hundred thirty-eight pairs: individuals with dementia and their informal, nonprofessional caregivers.
MEASUREMENTS: Care management activity types extracted from an electronic database were used as predictors of caregiver mastery and relationship strain, which were measured through mailed surveys. Multivariable linear regression models were used to predict caregiver mastery and relationship strain.
RESULTS: For each care manager home environment assessment, caregiver mastery increased 4 points (range 0–100, mean±standard deviation 57.1±26.6, 95% confidence interval (CI)=2.4–5.7; P =.001) between baseline and 18 months. For every action linking caregivers to community agencies for nonspecific needs, caregiver mastery decreased 6.2 points (95% CI=−8.5 to −3.9; P <.001). No other care management activities were significantly associated with this outcome, and no specific activities were associated with a change in caregiver relationship strain.
CONCLUSION: Home assessments for specific needs of caregivers and persons with dementia are associated with improvements in caregivers' sense of mastery. Future work is needed to determine whether this increase is sustained over time and decreases the need for institutionalization.     

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.     

Effect of Caregiver Family Status on Care Recipient Symptom Severity and Caregiver Stress at Nursing Home Intake

The present research investigates differences between primary informal caregivers who were in the care recipient's immediate family (adult children or spouses) versus those primary caregivers who were outside the immediate family. Measurement occurred at the time of admission of the care recipient to an urban nursing home. We hypothesized that immediate family caregivers would report greater behavioral disturbance among care recipients and increased caregiver depression and stress. Data were collected from 115 consecutive caregiver-elder dyads at nursing home intake. Non-immediate family caregivers comprised 43% of the sample. Consistent with our hypotheses, immediate family caregivers reported significantly greater caregiver depression and caregiver stress. Immediate family care recipients demonstrated greater behavioral disturbance. Implications for policy and caregiver interventions are discussed.     

Effects of the home environmental skill-building program on the caregiver-care recipient dyad: 6-month outcomes from the Philadelphia REACH Initiative

PURPOSE: We examine 6-month effects of the Environmental Skill-Building Program on caregiver well-being and care recipient functioning and whether effects vary by caregiver gender, race (White or non-White), and relationship (spouse or nonspouse). DESIGN AND METHODS: We enrolled 255 family caregivers of community-residing persons with Alzheimer's disease or related disorders, of whom 190 participated in a follow-up interview. Caregivers were randomized to a usual care control group or intervention group that received five home contacts and one telephone contact by occupational therapists, who provided education, problem-solving training, and adaptive equipment. Baseline and 6-month follow-up included self-report measures of caregiver objective and subjective burden, caregiver well-being, and care recipient problem behaviors and physical function. RESULTS: Compared with controls (n = 101), intervention caregivers (n = 89) reported less upset with memory-related behaviors, less need for assistance from others, and better affect. Intervention spouses reported less upset with disruptive behaviors; men reported spending less time in daily oversight; and women reported less need for help from others, better affect, and enhanced management ability, overall well-being, and mastery relative to control group counterparts. Statistically significant treatment differences were not found for hours helping with instrumental activities of daily living, upset with providing assistance with instrumental activities of daily living and activities of daily living, perceived change in somatic symptoms, White versus non-White caregivers, or care recipient outcomes. IMPLICATIONS: The Environmental Skill-Building Program reduces burden and enhances caregiver well-being in select domains and has added benefit for women and spouses.     

Effect of Caregiver Family Status on Care Recipient Symptom Severity and Caregiver Stress at Nursing Home Intake

The present research investigates differences between primary informal caregivers who were in the care recipient's immediate family (adult children or spouses) versus those primary caregivers who were outside the immediate family. Measurement occurred at the time of admission of the care recipient to an urban nursing home. We hypothesized that immediate family caregivers would report greater behavioral disturbance among care recipients and increased caregiver depression and stress. Data were collected from 115 consecutive caregiver-elder dyads at nursing home intake. Non-immediate family caregivers comprised 43% of the sample. Consistent with our hypotheses, immediate family caregivers reported significantly greater caregiver depression and caregiver stress. Immediate family care recipients demonstrated greater behavioral disturbance. Implications for policy and caregiver interventions are discussed.     

Household care for ill and disabled persons: challenges for the Mexican health care system

OBJECTIVE: To identify the pattern of time devoted by members of Mexican households to providing care to ill and disabled family members. To analyze the mechanisms used by families to provide care to an ill or disabled member. MATERIAL AND METHODS: The database of the 2002 National Survey of Time Use was explored to accomplish the first objective. The second objective was accomplished by collecting primary data through in-depth interviews and focal groups in Coahuila, Sinaloa, Zacatecas, Jalisco, Oaxaca and Yucatán from June to December 2004. RESULTS: It was estimated that 1,738,756 persons spent time providing care to ill persons and 1,496,616 to disabled persons, over the reference period of the survey. There are important differences in the dedication of hours by gender and education level. Moreover, households tend to reorganize their structure to provide care to ill and disabled members. Women tend to have more responsibilities in the process. There are important differences in the care of ill and of the disabled in terms of the physical and emotional stress produced in the caregiver. CONCLUSIONS: The implications of results in the care of ill and disabled populations are highly relevant for the future of the Mexican health care system. Population aging and the increase of chronic diseases call for a reinforced relationship between institutional and household care so as to complement capacities, a situation already taking place in other countries.     

Assistance received by employed caregivers and their care recipients: who helps care recipients when caregivers work full time?

PURPOSE: This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients. DESIGN AND METHODS: Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services. RESULTS: Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers. IMPLICATIONS: Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.