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.     

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.     

Latent growth curve analyses of emotional support for informal caregivers of vulnerable persons with HIV/AIDS

People living with HIV/AIDS (PLHIV) have growing rates of morbidity and need for informal care, especially among drug-using PLHIV. Informal caregivers, or persons providing unpaid emotional or instrumental support, have protective effects on the health and well-being of PLHIV. Research suggests that social support, including care recipients' reciprocity of emotional support, is important to sustained caregiving. This study examined HIV caregivers' perceived emotional support over time from their current or former injection drug-using care recipients. Data were from baseline, 6-month, and 12-month follow-up of the BEACON study. Latent growth curve analysis showed a decline in reciprocated emotional support reports over time, particularly among caregivers themselves HIV seropositive or currently substance using. Researchers should develop interventions to strengthen the caregiving relationship by promoting reciprocity of emotional support, with implications for sustaining caregiving to vulnerable PLHIV and improving their health outcomes. Interventions should especially target dyads in which caregivers are also HIV positive or using substances.     

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.     

Predictors of decreased self-care among spouse caregivers of older adults with dementing illnesses

This study describes the health behaviors (alcohol consumption, exercise, sleep patterns, smoking, and weight maintenance) of a sample of older adult spouse caregivers (N = 233) and investigates the predictors of decreased self-care since caregiving began. Multiple regression results indicate that caregivers who experience greater developmental burden, report a greater number of depressive symptoms, perform a greater number of activities of daily living (ADL) tasks in caregiving and spend more hours in a day providing care, and who have lower self-efficacy for both self-care and spouse care are at greater risk for negative health behavior change. Results have implications for the identification of caregivers who may be particularly vulnerable to the negative health impact of caregiving.     

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.     

Family caregiving and congestive heart failure. Review and analysis

BACKGROUND: There is increasing evidence that discharge planning and post-discharge support for CHF patients can contribute greatly to the medical management of heart failure (CHF) in the community and that the quality of the CHF patient's close personal relationships can influence outcome in CHF. However, there has been little research on the impact of CHF on the family or the role of the family in the management of the condition. In this paper, we provide a review and analysis of studies that have explicitly investigated these issues in the informal carers of CHF patients. RESULTS OF THE REVIEW: Sixteen papers were identified that examined the role and/or impact of informal caregiving for CHF patients. Our main findings were: demands specific to CHF caregiving were identified, e.g., monitoring complex medical and self-care regimen, disturbed sleep and frequent hospitalisation of patients. Relatively high levels of emotional distress were identified in CHF caregivers. Few studies explicitly investigated the role of informal carers in the management of CHF. Studies were limited in number, scope and quality. CONCLUSION: Caring for a family member with CHF can affect the well-being of those responsible for care, which may have consequences for the CHF patient's health. Further studies are needed to clarify these issues and to examine the role of informal caregivers in the management of CHF in the community.     

Overwhelming odds: caregiving and the risk of institutionalization

In this study we explored whether informally or formally provided long-term care services reduce the risk of institutionalization among the impaired elderly and the nature of the relationship between support and risk. We relied principally on the 1982 National Long-Term Care Survey (NLTCS) with supplementary data from the 1984 NLTCS and the national American Housing Survey. Five specific types of effects were tested: direct effects of formal and informal care on institutional risk; buffering effects of support moderating risk factors; supplementation effects of formal support on the risk-reducing impact of informal care; facilitating effects of the housing environment in enabling support to continue; and intervening effects mediating the direct effects. The effects of each type of support differ substantially. The analyses do not confirm the notion that formal, paid care reduces institutional risk. In fact, the use of paid caregivers is associated with greater risk of institutionalization, other things equal. The results for informal care are more mixed. A general measure that accounts for all types of informal support has no effect on institutional risk in any of the formulations tested. But the marginally significant effects of quality and proximate support in the direct effects model are consistent with the hypothesis that caregiving reduces institutional risk. The findings also indicate that a small number of housing or locational features are facilitators of formal support and particular types of informal support.     

The Hidden Patient: Addressing the Caregiver

Premium caregiving is pivotal to achieve quality care for persons with chronic or disabling conditions. Unpaid informal caregivers currently provide for a substantial proportion of care recipient needs including 80% of long-term care needs in the United States. Within the next 2 decades, 78 million baby boomers will reach 65 years of age and older, creating unique and extensive challenges to an already flawed health care system; this older cohort will at minimum increase utilization of health care resources. On an individual level, care providers need to support and educate caregivers and make caregivers partners in the delivery of excellent care. To achieve this, health care professionals need to educate themselves regarding the caregivers’ demographics, ethnicity, characteristics, effective interventions, and outcomes. From a health policy perspective, public, private, and community funding needs to be allocated to advocate for, encourage, and train these caregivers.     

The importance of familiarity with caregiving for public caregiver stigma: Evidence from a cross-sectional study in Germany

ObjectivesThis study aimed to investigate the association between familiarity with caregiving and public stigma towards informal caregivers of older individuals.Material and methodsThe sample for this Online-Survey was identified using a quota-system based on German micro census data (N=1037; aged 18 years and older, living in Germany). Familiarity with caregiving was assessed by asking whether the participant has experience in or has friends or relatives with experience in informal or professional caregiving for individuals aged 65 years or older. Public caregiver stigma was assessed by analyzing the emotional, behavioral and cognitive reactions towards caregivers as described in a vignette.ResultsAdjusted regressions analyses indicated that experience in providing informal care was associated with increased appreciative feelings and statements, and decreased social distance. Experience in providing professional care was associated with increased devaluing statements. Having friends or relatives who have experience in informal caregiving was associated with decreased social distance. Having friends or relatives who have experience in professional caregiving was associated with decreased devaluing feelings, increased appreciative feelings and decreased social distance.ConclusionsResults indicate that familiarity with caregiving, through one's own informal care experience or through contact with informal or professional caregivers, reduced public stigma towards informal caregivers. Moreover, experience with informal care or contact with professional caregivers increased appreciation of informal caregivers. However, increased negative stigmatizing statements were indicated among participants with experience in professional caregiving. Fostering contact and cooperation between informal caregivers and non-caregivers, as well as with professional caregivers may help reduce stigmatizing reactions.     

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.     

Vulnerabilities and Caregiving in an Ethnically Diverse HIV-Infected Population

The current study aimed to identify the primary informal caregivers of a group of urban HIV+ adults (n = 250) and to determine relationships between demographic, medical, and substance use characteristics and caregivers types. Reported caregiver types included 36.8% familial, 22.4% significant other, and 22.8% institutional or other caregiver relationships. The remaining 18% of the sample reported having no individual that rendered informal care. Factors associated with the absence of an informal caregiver included African American race and low education. Hispanic participants reported the highest frequency of family caregivers while participants with a history of substance disorder were less likely to identify a significant other as a caregiver. This study demonstrates the evolving nature of informal caregiving in HIV, race- and education-related disparities in the absence of primary caregivers, and the importance of sociocultural and demographic factors in the study of HIV caregiving. Research supported by R24MH59724 from the National Institutes of Health.     

Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis

OBJECTIVE: To improve understanding of the nature and magnitude of the burden of informal care and also to indicate important areas for improving the current ways in which informal care is investigated. METHODS: Information on objective burden (such as care tasks performed and time investment), subjective burden (using the Caregiver Reaction Assessment instrument and a self-rated burden score), and quality of life (using the EuroQoL instrument) were collected in a postal questionnaire of 153 informal caregivers who provide care for rheumatoid arthritis (RA) patients. RESULTS: Caregivers had been caring for the RA patients on average for >11 years, reflecting the chronic nature of RA. They provide a substantial amount of care (27.4 hours per week) and are moderately strained (24.6 on the self-rated burden scale). Caregivers are relatively healthy on average but caregivers of more severe RA patients are relatively unhealthy, which may indicate health losses due to caregiving. CONCLUSION: Informal care can be burdensome in the context of RA. More information may help assist informal caregivers in caring for RA patients and help to avoid health problems and high subjective burden.     

Cross cultural issues in caregiving for persons with dementia: Do familism values reduce burden and distress?

While family caregiving for persons with dementia has been recognized as a major stressor for over twenty years, attention to the role of cultural values in influencing the stress and coping process of caregivers is rarely studied. This article summarizes individual studies from our lab group that include Latino caregivers, Korean and Korean American caregivers, Japanese American caregivers, and African American caregivers. The role of familism as a cultural value that was assumed to lead to greater acceptance of the caregiving role and to better mental health outcomes for caregivers was explored in each of these groups. Familism was found to vary across groups as expected based on acculturation to Western values of individualism. However, the relationship of familism to caregiving burden was not consistent across ethnic groups and was either independent of caregiving outcomes, or was positively correlated with distress. These results suggest that assumptions about cultural influences on caregiving need to be reexamined and explored in greater depth empirically. He is the principal investigator for the NIA-funded Stress, Ethnicity, and Caregiving Study (AG 16307) and executive director of the Los Angeles Caregiver Resource Center. Her research interests encompass the role of cultural values, personality, and social support in the stress and coping process of ethnic minority dementia caregivers. Her research interests are caregiver stress, health effects of stress, and race group health disparities. Her research interests include the stress and coping process of Korean American dementia caregivers, specifically the relationship between burden and family solidarity. Her research interests involve cross-national and cross-cultural comparisons of the issues related to gerontology and geriatric social work. Her research interests lie in the health effects of stress in Korean dementia caregivers.     

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.     

Frailty differences in older adults’ use of informal and formal care

ObjectivesThis study examines different combinations of informal and formal care use of older adults and investigates whether these combinations differ in terms of need for care (physical and psychological frailty) and enabling factors for informal and formal care use (social and environmental frailty).MethodsUsing cross-sectional data from the Belgian Ageing Studies (survey, N = 38,066 community-dwelling older adults), Latent Class Analysis (LCA) is used to identify combinations of informal and formal care use. Bivariate analyses are used to explore the relationship between the different combinations of care use and frailty.ResultsLatent Class Analysis (LCA) identified 8 different types of care use, which vary in combinations of informal and formal caregivers. Older adults who are more likely to combine care from family and care from all types of formal caregivers are more physically, psychologically and environmentally frail than expected. Older adults who are more likely to receive care only from nuclear family, or only from formal caregivers are more socially frail than expected.ConclusionsOlder adults with a higher need for care are more likely to receive care from different types of informal and formal caregivers. High environmental frailty and low social frailty are related with the use of care from different types of informal and formal caregivers. This study confirms that informal care can act as substitute for formal care. However, this substitute relationship becomes a complementary relationship in frail older adults. Policymakers should take into account that frailty in older adults affects the use of informal and formal care.     

Association of care recipients’ care‐need level with family caregiver participation in health check‐ups in Japan

Aim

The public mandatory long‐term care insurance system in Japan has supposedly mitigated the care burden for family caregivers of older adults, whereas family caregivers still play a considerable role in providing care. The effect of informal caregiving on the caregiver's health has been of great interest. We investigated the relationship between the amplitude of informal caregiving and caregiver participation in health check‐ups in Japan.

Methods

The present study was a cross‐sectional analysis of nationally representative data in Japan (2010 Comprehensive Survey of Living Conditions). We investigated the relationship between care recipients’ care‐need level and in‐home caregiver participation in health check‐ups during the last year of the survey for caregivers.

Results

A total of 3354 caregiver/recipient pairs were included in the study. Crude proportions of caregivers completing a health check‐up by care‐need level were 68.4% (support required 1 and 2), 63.5% (care required 1–3) and 60.3% (care required 4 and 5). Higher care‐need level was negatively associated with caregiver participation in health check‐ups (support required 1 and 2as reference, care required 1–3: odds ratio 0.82, 95% confidence interval 0.75–0.90), care required 4 and 5: odds ratio 0.76, 95% confidence interval 0.74–0.79) after adjustment for possible confounders. Inclusion of the caregiver time devoted to care per day and caregiver self‐rating of health as independent variables did not change the result.

Conclusions

These results suggest that facilitating health check‐up participation for family caregivers of care recipients with higher care‐need levels might be an effective intervention for decreasing the gap in health behavior possibly caused by informal caregiving. Geriatr Gerontol Int 2018; 18: 26–32 .