Family caregivers in palliative care

This article defines caregiving broadly to include the informal (ie, unpaid) care provided by family members that goes beyond customary and normative social support provided in social relationships. Family caregivers in particular play significant roles in the care of elders with advanced chronic disease and in the context of palliative and end-of-life care. These caregivers typically are involved in critical medical decisions, provide vital assistance with activities of daily living, and carry out most nonpharmacologic and pharmacologic treatment recommendations for community-based elders. This article describes family caregivers and the costs of care and introduces the stress process model to highlight essential caregiving experiences and needs in the context of palliative care. Common interventions used to support caregivers are highlighted, and the bereavement experience among caregivers is discussed.     

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.     

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.     

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.     

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.     

Characteristics of strong commitments to intergenerational family care of older adults

OBJECTIVE: The purpose of this research was to describe the characteristics of strong commitment to home-based elder care among intergenerational family caregivers. METHODS: I conducted two qualitative studies using in-depth interviews with primary and secondary intergenerational caregivers. A total of 45 primary caregivers, 10 spouses, and 11 adult grandchildren discussed development of their relative's care, their caregiving experiences, use of paid services, and how caregiving affected their lives. I followed McCracken's five-step method for analysis of long interviews. RESULT: Strongly committed caregivers composed half of the total sample. All primary caregivers with strong commitments were women; some strongly committed secondary caregivers were men. Strong commitments had moral, religious, and affectionate bases. Participants gave compassionate care and reframed adverse situations as manageable challenges. Family members and paid providers assisted primary caregivers. Participants viewed caregiving as rewarding and as an opportunity to teach compassion to children. DISCUSSION: Results suggest that strongly committed intergenerational caregivers need support from both family and formal care services to sustain their commitments to care. Future research can investigate the role of resilience in caregiver commitments and develop caregiver commitment measures for use in elaborating models of informal long-term care.     

How important is functional status as a predictor of service use by older people?

In studies of older people, it is often assumed that biophysical, or functional, status is the primary determinant of formal service use. This article reports baseline data from a longitudinal study of a community-based, linked random sample of frail elders (n = 635) and their informal caregivers (n = 429) to investigate the relative contribution of social circumstances to the use of community-based formal services. Elder respondents were categorized into three groups defined by their primary source of care: (a) informal only, (b) mixed help with predominantly informal care, (c) mixed help with predominantly formal services. Of the respondents, 79% received most of their help from informal caregivers, whereas 21% relied on formal services for most of their assistance. A series of logistic regression models were developed to identify variables that discriminated between major sources of care. The social factor of living alone is the consistent predictor of reliance on formal services. Only for those elders living alone does the physical factor of level of frailty predict reliance on formal services. Elders who live with a caregiver, particularly a spouse, are likely not to use any formal services regardless of their level of frailty. Finally, elders reliant on formal services receive much less care overall.     

Paid and unpaid support received by co-resident informal caregivers attending to community-dwelling older adults in Spain

In this study from Spain, support received from outside the household by informal caregivers of people older than 64 years is analysed. The Spanish Time Use Survey (2002–2003) is used to examine: (1) the proportion of co-resident informal caregivers receiving paid and unpaid support by persons from outside the home; (2) the main factors associated with receipt of external paid and unpaid support; and, (3) factors linked to the amount of support received in terms of time. The study sample included 404 caregivers who cohabited with the person receiving care. We used a modified Andersen Behavioural Model as the analytic framework. Significant differences are observed in receipt of support according to predisposing, enabling and need factors. Overall, support (paid and unpaid) is significantly lower among households with women caregivers. In comparison with the least educated caregivers, higher levels of paid support are observed among those with secondary school or higher education, even when income, household size and receiver’s age are included in the model. After controlling for care receivers’ disability level and age, unpaid support is significantly higher among employed caregivers, spouses and caregivers living in medium-sized cities, versus unemployed caregivers, other relatives and caregivers living in large cities, respectively. These data highlight the inequalities of resources in terms of caregiver gender, socio-economic status and population size. The findings underscore the need to extend analysis not only to primary caregivers, but to caregiving networks and other types of caregiver support as well.     

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.     

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.     

Minor children and adult care exchanges with community-dwelling frail elders in a St. Lucian village

OBJECTIVE: Research on care of community-dwelling frail elders typically includes formal health service providers and adult members of the informal care system. Involvement of children and adolescents with elder care is largely undocumented. The aim of this article is to describe children's involvement in elder care. These findings are part of an ethnographic community study that examined common Western assumptions about elder care in a St. Lucian village. METHODS: Data were obtained in a four-phase, 5-year, community-based ethnographic field study that included in-depth network analysis of elder households. RESULT: One hundred eighty-eight informal caregivers assisted 14 elder networks in obtaining the things they needed to live through provision of 355 care activities. Forty-five children (ages 3(1/2) to 16) provided 111 of 355 (31%) care activities. The frail elders gave adults and children community member caregivers 196 and 94 benefits, respectively. DISCUSSION: Minor children are integrally involved in reciprocal exchanges for elder care in this village. Although they do not provide all of the same care activities as adults, they clearly assist elders, especially with running errands. Elders emphasized different motivational mechanisms for involving minor children and adults in their care networks.     

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.     

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.     

Hydra revisited: substituting formal for self- and informal in-home care among older adults with disabilities

PURPOSE: In response to concerns among policymakers and others that increases in the availability of publicly funded formal services will lead to reductions in self- and informal care, this study examines the relationship between the extent of formal in-home care received and levels of self- and informal care. DESIGN AND METHODS: Two-stage least squares regression analyses were conducted, using data drawn from interviews conducted with a sample of 661 older users and nonusers of publicly subsidized home care services. RESULTS: No evidence was found to indicate that more extensive use of formal services is associated with less extensive self- or informal care. This is true among those receiving publicly subsidized services as well as those required to pay part or all of the cost of the in-home services they receive. IMPLICATIONS: The findings provide little support for the substitution hypothesis that an increase in the use of formal in-home services will tend to erode levels of informal or self-care.     

Informal and Formal Support among Community-Dwelling Japanese American Elders Living Alone in Chicagoland: An In-Depth Qualitative Study

A key public health approach to promote independent living and avoid nursing home placement is ensuring that elders can obtain adequate informal support from family and friends, as well as formal support from community services. This study aims to describe the use of informal and formal support among community-dwelling Nikkei elders living alone, and explore perceived barriers hindering their use of such support. We conducted English and Japanese semi-structured, open-ended interviews in Chicagoland with a convenience sample of 34 Nikkei elders age 60+ who were functionally independent and living alone; 9 family/friends; and 10 local service providers. According to participants, for informal support, Nikkei elders relied mainly on: family for homemaking and health management; partners for emotional and emergency support; friends for emotional and transportation support; and neighbors for emergency assistance. Perceived barriers to informal support included elders' attitudinal impediments (feeling burdensome, reciprocating support, self-reliance), family-related interpersonal circumstances (poor communication, distance, intergenerational differences); and friendship/neighbor-related interpersonal situations (difficulty making friends, relocation, health decline/death). For formal support, Nikkei elders primarily used adult day care/cultural programs for socializing and learning and in-home care for personal/homemaking assistance and companionship. Barriers to formal support included attitudinal impediments (stoicism, privacy, frugality); perception of care (incompatibility with services, poor opinions of in-home care quality); and accessibility (geographical distance, lack of transportation). In summary, this study provides important preliminary insights for future community strategies that will target resources and training for support networks of Nikkei elders living alone to maximize their likelihood to age in place independently.     

Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options

The objective of this study was gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in reentering the job market, and thus offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, whether training informal caregivers might help them transition into a paid caregiving or other health service role was explored. Caregivers (N = 55) of a chronically or terminally ill family member or friend in a suburban county near Chicago were interviewed. The interview guide addressed household economic effect of illness, emotional burden, and training program interest. Fifty‐six percent of caregivers were interested in training to work outside the home, caring for people in other households, 84% indicated a desire to learn more about health care, and 68% reported a desire to explore job possibilities in health care. Eighty‐two percent were experienced in working with an individual aged 50 and older. Informal caregivers' interest in a training program to bolster their qualifications for a role in the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly population and the desire of informal caregivers to find gainful employment, these informal caregivers could provide the impetus to invest in informal caregiver training.     

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.     

Intermittent care and caregivers at home

The role of the caregivers of 22 patients treated in an intermittent nursing home programme was studied. Intermittent care was effective and often led to improvements in the patients. Because of their pronounced feeling of responsibility for these often very demanding patients, the main objection of the caregivers was that they wanted longer or more frequent nursing home periods than were currently offered. Half of the patients were regarded by the formal caregivers as more demanding than other clients in the home help service. In some cases the home helpers considered the patients more dependent in various activities of daily living than did the patients themselves. Meeting other people at the nursing home stimulated the patients and positively influenced the relationship between them and the home helpers. The most important aspect of intermittent care was its potential for variety, medical treatment and nursing care. The caregivers felt secure with it, which was necessary in order for them to relax when being relieved.     

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.