Using an Aging Services Agency/University Partnership to Study Informal Caregiver Respite Programs

By the year 2030, 13 % of the world’s population will be aged 65 years or older. At some point, many of these older adults will require some form of informal caregiving from family members and/or friends. Furthermore, 40 % of the caregivers caring for these elders currently are between the ages of 50 and 64, making caregiving an important productive aging activity. As a result of the doubling of the 65?+?age group globally by the year 2050, caregiving will become an important social and public health concern. And, the labor and services provided by caregivers will continue to be a critical activity of productive aging. For this reason, it is imperative that research examining the impact of caregiver respite programs on caregiver outcomes, including caregiver strain, general health, and emotional well-being, be conducted in order to meet the needs of future informal caregivers. In this paper, the authors answer the following question: How can researchers effectively partner with community-based agencies to carry out caregiver respite program studies that bridge academia and every day practice, and inform policymakers about the values of community-based caregiver respite programs for the caregivers of frail older adults? The question is answered by: 1) describing the factors that contributed to the success of one university/community-based partnership, 2) describing, and reporting, the results of two caregiver respite program studies conducted by the partnership, and 3) discussing the lessons learned as well as the future research opportunities that resulted from the university/community-based agency research partnership.     

My parent--not myself. Contrasting themes in family care

We studied 100 adult child caregivers providing care to dependent parents and found that although the vast majority supported family care for older persons in general and their own parent in particular, 46% did not want family care for themselves if they became dependent. For many the contrast between their general statements supporting care of parents and eschewing it for themselves was quite sharp. Caregiver variables significantly associated with not wanting family care for self included age, conflict with relatives over caring, caregiving burden, number of caregiving tasks performed, poorer mental health, and number of years has provided care. Caregivers not wanting family care for self were also more likely to consider placing their parent in a nursing home. Our data reveal contrasting themes in caregiving that may affect caregiver well-being and burden, and that may have implications for the future care of dependent older persons.     

Care Needs and Caregivers: Associations and Effects of Living Arrangements on Caregiving to Older Adults in India

As the ageing phenomenon continues in India, we explore the care needs of older adults and identify caregivers for specific care needs across living arrangements. Using the United Nations Population Fund (UNFPA) conducted Building Knowledge Base on Population Ageing in India (BKPAI 2011) data comprising 9850 older adults, we employed statistical methods to analyze the data, find associations and used binary logistic regression to model the adjusted and unadjusted effects of living arrangements on caregiving to older adults for specific care needs. Care-requiring situations considered were acute sickness, sickness requiring hospitalization, chronic morbidity, functional disability represented by ADL and IADL limitations, and locomotor disability. Results indicate that living arrangements of older adults were significantly associated with health, functional status and disability as well as caregiving patterns. Our results suggest that co-residence with children and all others was beneficial to older adults in obtaining care from a family caregiver for their hospitalization and chronic morbidity needs while living with spouse or living with a partner was advantageous for older adults in receiving care for their ADL limitations and during hospitalizations. Mean number of children was also significantly associated with the availability of a caregiver during hospitalization, locomotor disability, chronic morbidity and acute sickness. The study also highlights a little known phenomenon, that there was familial help available to older adults who lived alone. Notably, non-family sources of caregiving were steadily becoming visible (as high as 8–10 % of the caregiving component) especially among older adults living alone.     

Effects of a Health and Social Collaborative Case Management Model on Health Outcomes of Family Caregivers of Frail Older Adults: Preliminary Data from a Pilot Randomized Controlled Trial

Family caregiving is an important form of informal care provided to frail, community‐dwelling older adults. This article describes a health and social collaborative case management (HSC‐CM) model that aims to optimize the support given to caregivers of frail elderly adults. The model was characterized by a comprehensive assessment to identify the caregiver's needs; a case management approach to provide integrated, coordinated, continued care; and multidisciplinary group‐based education customized to the caregiver's individualized needs. A pilot study using a randomized controlled trial study design was conducted to evaluate the effects of the HSC‐CM on caregiver burden and health‐related quality of life of family caregivers of frail elderly adults. Sixty family caregivers (mean age 61.3 ± 15.5) of frail older adults recruited from a community center for elderly adults in Hong Kong were randomly assigned to receive a 16‐week HSC‐CM intervention or usual care. Case managers who conducted a comprehensive assessment of the care dyads to identify caregiver needs using a case management approach to optimize care coordination and continuity led the HSC‐CM. These case managers served as liaisons for multidisciplinary efforts to provide group‐based education according to caregiver needs. Family caregivers who participated in the HSC‐CM had significantly greater improvement on the Caregiver Burden Index (p = .03) and on the Medical Outcomes Study 36‐item Short‐Form Survey subscales, including vitality (p = .049), social role functioning (p = .047), and general well‐being (p = .049). This study provides preliminary evidence indicating that client‐centered care, a case management approach, and multidisciplinary support are crucial to an effective caregiving support initiative. A full‐scale study is required to validate these findings.     

Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis

In the present meta-analysis, we integrated findings from 228 studies on the association of six caregiving-related stressors and caregiving uplifts with burden and depressed mood. Care recipients' behavior problems showed stronger associations with caregiver outcomes than other stressors did. The size of the relationships varied by sample characteristics: Amount of care provided and care receivers' physical impairments were less strongly related to burden and depression for dementia caregivers than for caregivers of nondemented older adults. For spouse caregivers, physical impairments and care recipients' behavior problems had a stronger relationship to burden than for adult children. Furthermore, we found evidence that the association of caregiver burden with the number of caregiving tasks, perceived uplifts of caregiving, and the level of physical impairment of the care receiver were stronger in probability samples than in convenience samples.     

Older Adults: The “Panini Sandwich” Generation

There are various reasons underlying why older adults find themselves in the role of a caregiver to their adult child, ranging from having a child born with a developmental disability, to having a child who suffers from a long term disability to having an adult child who has been diagnosed with a psychological disorder to raising one’s grandchildren in the absence of their adult children. The caregiving literature focuses almost entirely on care provided to the older adult, rather than by the older adult. Unlike the breadth of literature on these adult children or spouse caregivers, there is a dearth of literature about this cohort and the impact that care provision has on their mental health and well-being. This may be largely due to the lack of a framework for identifying and focusing on the needs of this cohort of caregivers. The only framework to date has focused on the bi-directionality of care when the adult child is at the center of care provision. As older adult caregivers age, they are pressed between their own physical and emotional aging needs and providing care to their adult children. The conceptualization of caregivers in this cohort as the Panini Sandwich Generation provides the needed lens by which mental health professionals can begin to explore and address the emotional and psychological needs and experiences of older adult caregivers.     

Chinese Older Adults Taking Care of Grandchildren: Practices and Policies for Productive Aging

Older adults around the world provide care and support for their family, relatives, and friends. This not only generates immense economic and social value, but is also an important aspect of productive aging. This paper analyzes data from the 2005 Chinese Longitudinal Health Longevity Survey (CLHLS), the 2008 Chinese Residents’ Time Use Survey, and a study conducted by the author (Sun Popul J 4:14–18, 2006). In rural China, because the young labor force works in cities, a large number of “left-behind children” live with their grandparents. Such cross-generational families made up over a quarter of rural households in 2005. In the cross-generational family, the role and value of caregiving for grandchildren by elderly grandparents has been strengthened, as has the burden of care placed upon them. Based on an analysis of the policies and practices of productive aging, this paper seeks to raise awareness of the enormous caregiving contributions made by older adults. Collecting information on older adult caregiving will help inform a policy framework to provide professional and systematic support, so that family and social care systems can operate effectively.     

Effectiveness of Family and Caregiver Interventions on Patient Outcomes in Adults with Cancer: A Systematic Review

BACKGROUND

Family and caregiver interventions typically aim to develop family members’ coping and caregiving skills and to reduce caregiver burden. We conducted a systematic review of published randomized controlled trials (RCTs) evaluating whether family-involved interventions improve patient outcomes among adults with cancer.

METHODS

RCTs enrolling patients with cancer were identified by searching MEDLINE, PsycInfo and other sources through December 2012. Studies were limited to subjects over 18 years of age, published in English language, and conducted in the United States. Patient outcomes included global quality of life; physical, general psychological and social functioning; depression/anxiety; symptom control and management; health care utilization; and relationship adjustment.

RESULTS

We identified 27 unique trials, of which 18 compared a family intervention to usual care or wait list (i.e., usual care with promise of intervention at completion of study period) and 13 compared one family intervention to another individual or family intervention (active control). Compared to usual care, overall strength of evidence for family interventions was low. The available data indicated that overall, family-involved interventions did not consistently improve outcomes of interest. Similarly, with low or insufficient evidence, family-involved interventions were not superior to active controls at improving cancer patient outcomes.

DISCUSSION

Overall, there was low or insufficient evidence that family and caregiver interventions were superior to usual or active care. Variability in study populations and interventions made pooling of data problematic and generalizing findings from any single study difficult. Most of the included trials were of poor or fair quality.     

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.     

Carer burden and dyadic attachment orientations in adult children-older parent dyads

Background and ObjectivesThis study takes an interpersonal approach to the study of carer burden in families where adult children care for older parents. The aim of the study was to determine whether different pairings of attachment insecurity in older parent-adult child dyads are predictive of carer burden.Research Design and MethodsSeventy dyads whereby adult children provided weekly care to their older parents completed self-report measures of attachment. Adult children also completed a measure of carer burden.ResultsAnxious-avoidant attachment insecurity pairings in parent-child dyads were associated with increases in carer burden. However, anxious-anxious and avoidant-avoidant attachment insecurity pairings were not associated with burden.Discussion and ImplicationsThe attachment insecurity of the care-recipient was found to moderate the association between a carer’s attachment insecurity and burden, but only when the care-recipient’s attachment insecurity differed to that of the carer’s. These findings have implications for research, policy, and practice in aged care. The findings highlight the importance of focusing on attachment insecurity in aging families as well as taking a dyadic perspective when studying caregiving outcomes such as carer burden. The findings suggest that carers who may require the greatest support are those whose parents demonstrate contrasting orientations of attachment insecurity.     

A two-factor model of caregiving appraisal and psychological well-being

Groups of spouse (N = 285) and adult child (N = 244) caregivers of elderly parents suffering from Alzheimer's disease were interviewed regarding their caregiving behaviors, evaluations of caregiving, and general psychological well-being. A model of caregiving dynamics where the objective stressor, caregiver resources, and subjective appraisal of caregiving (operationalized as caregiving satisfaction and burden) were studied as they affected both positive affect and depression was tested. For spouses, caregiving satisfaction was not related to aspects of the stressor, but was a significant determinant of positive affect. Among adult children, high levels of caregiving behavior resulted in both greater caregiving satisfaction and burden. Burden, in turn, was related to depression in both groups but, among adult child caregivers, positive affect was not affected by caregiving satisfaction. Limited support was found for the hypothesis that the positive and negative aspects of caregiving contributed to analogous aspects of generalized psychological well-being but not to the opposite-valence outcomes.     

Factors affecting burden of South Koreans providing care to disabled older family members

This study examined the determinants of caregiving burden among South Koreans who care for their disabled older family members. A sample of 1000 primary caregivers taken from the Comprehensive Study for Elderly Welfare Policy in Seoul, South Korea was analyzed. Independent variables included the demographic characteristics of caregivers and care recipients, the severity of cognitive impairment among care recipients, care recipients' functional abilities, financial adequacy and caregivers' degree of social support. Hierarchical regression was used to predict the levels of caregivers' burden. Similar to western care providers, South Korean caregivers who were in poor health and who had little informal social support, inadequate financial resources and more weekly caregiving hours were more likely to experience intense caregiving burden. Burden was also positively related to the functional and cognitive disabilities of care recipients. The results of this study indicate that certain aspects of caregiving are unique to South Koreans. Daughters-in-law were the most common caregiver within the sample which indicates that South Korean eldercare is non-consanguineous. Identifying predictors of South Korean caregivers' burden promotes a more comprehensive understanding of cultural experiences in caring for older adults.     

Positive and negative evaluation of caregiving among three different types of informal care relationships

Based on the caregiver stress model, we examined how care demands, caregiver motivation, coping style and external support are associated with positive evaluation and caregiver burden among spousal, adult child and other types of care relations. Data from a sample of Dutch informal caregivers of 1,685 older persons (55 and older) were analyzed employing multivariate linear regression analyses for each of the care relationship types. Spouses (N = 206) report high positive evaluation and high burden, adult children (N = 1,093) report low positive evaluation, and other caregivers (N = 386) report high positive evaluation and a low burden. Multivariate linear regression analyses showed that motives and external support were important for positive evaluation but the impact varied among types of caregivers, whereas care demands and not asking for help were associated with burden for all types. Only among ‘other’ caregiver relationships, positive evaluation was negatively associated with burden. It is concluded that results confirm the dual nature of caregiving among spouses and children. The care context and motivation of the different types of caregivers explain their differences in care evaluation. Various interventions for types of caregivers are discussed.     

Reducing the distance in distance-caregiving by technology innovation

Family caregivers are responsible for the home care of over 34 million older adults in the United States. For many, the elder family member lives more than an hour’s distance away. Distance caregiving is a growing alternative to more familiar models where: 1) the elder and the family caregiver(s) may reside in the same household; or 2) the family caregiver may live nearby but not in the same household as the elder. The distance caregiving model involves elders and their family caregivers who live at some distance, defined as more than a 60-minute commute, from one another. Evidence suggests that distance caregiving is a distinct phenomenon, differs substantially from on-site family caregiving, and requires additional assistance to support the physical, social, and contextual dimensions of the caregiving process. Technology-based assists could virtually connect the caregiver and elder and provide strong support that addresses the elder’s physical, social, cognitive, and/or sensory impairments. Therefore, in today’s era of high technology, it is surprising that so few affordable innovations are being marketed for distance caregiving. This article addresses distance caregiving, proposes the use of technology innovation to support caregiving, and suggests a research agenda to better inform policy decisions related to the unique needs of this situation.     

Caregiver burden and health-related quality of life among Japanese stroke caregivers

OBJECTIVE: the present study had two main purposes: 1. To examine the relationship between caregiver burden and health-related quality of life in family caregivers of older stroke patients in Japan; and 2. To examine which characteristics of the caregiving situation significantly relate to increased burden. METHODS: subjects (n=100) were recruited from seven randomly selected neurological hospitals with out-patient rehabilitation clinics in western Japan and interviewed using the Zarit Burden Interview, the Modified Barthel Index, the Geriatric Depression Scale and the SF-12 Health Survey for health-related quality of life. RESULTS: increased caregiver burden was significantly related to worsening health-related quality of life, particularly worsening mental health (Geriatric Depression Scale and SF-12 items), even after controlling for caregiver age, sex, chronic illness, average caregiving hours/day, and functional dependence of the care-recipient. DISCUSSION: findings indicate that increased burden significantly relates to decreased health-related quality of life among stroke caregivers. In addition, the prevalence of depressive symptoms among caregivers was twice that of community dwelling older people. Roughly 52% of caregivers had Geriatric Depression Scale scores that warranted further evaluation. Despite the prevalence of depressive symptoms only one caregiver had received any psychiatric care during their caregiving tenure.     

The COACH prompting system to assist older adults with dementia through handwashing: An efficacy study

Background

Many older adults with dementia require constant assistance from a caregiver when completing activities of daily living (ADL). This study examines the efficacy of a computerized device intended to assist people with dementia through ADL, while reducing caregiver burden. The device, called COACH, uses artificial intelligence to autonomously guide an older adult with dementia through the ADL using audio and/or audio-video prompts.

Methods

Six older adults with moderate-to-severe dementia participated in this study. Handwashing was chosen as the target ADL. A single subject research design was used with two alternating baseline (COACH not used) and intervention (COACH used) phases. The data were analyzed to investigate the impact of COACH on the participants' independence and caregiver burden as well as COACH's overall performance for the activity of handwashing.

Results

Participants with moderate-level dementia were able to complete an average of 11% more handwashing steps independently and required 60% fewer interactions with a human caregiver when COACH was in use. Four of the participants achieved complete or very close to complete independence. Interestingly, participants' MMSE scores did not appear to robustly coincide with handwashing performance and/or responsiveness to COACH; other idiosyncrasies of each individual seem to play a stronger role. While the majority (78%) of COACH's actions were considered clinically correct, areas for improvement were identified.

Conclusion

The COACH system shows promise as a tool to help support older adults with moderate-levels of dementia and their caregivers. These findings reinforce the need for flexibility and dynamic personalization in devices designed to assist older adults with dementia. After addressing identified improvements, the authors plan to run clinical trials with a sample of community-dwelling older adults and caregivers.     

Burden among family caregivers of persons with Alzheimer's disease in nursing homes

PURPOSE: This article examines family caregiver burden after placement of a relative with Alzheimer's disease or a related dementia in a nursing home. Design and Methods: A systems-oriented contextual approach was used to study burden in 276 family caregivers. RESULTS: SAS PROC MIXED analysis showed burden to be associated with caregiver age, length of time involved in caregiving, custodial units, involvement in hands-on care, and expectations for care. IMPLICATIONS: The findings suggest that more services aimed at relieving caregiver burden after nursing home placement may be warranted, particularly so for caregivers who are older and for those who had a shorter length of involvement in direct caregiving before institutionalization.     

A comparison of the health of older Hispanics in the United States and Mexico: methodological challenges

OBJECTIVE: This study compares various dimensions of physical and emotional health between older Mexican-origin individuals in the United States and in Mexico. METHOD: The samples are drawn from the Mexican Health and Aging Study (MHAS) and the Hispanic Established Epidemiologic Study of the Elderly (H-EPESE) and include 3,875 Mexican residents with no history of residence in the United States and 2,734 Mexican-origin individuals 65 and older who live in the southwestern United States. RESULTS: Both immigrant and native-born Mexican-origin elders in the United States report more chronic conditions than elderly Mexicans, but they report fewer symptoms of psychological distress. Longer residence in the United States is associated with higher body mass index scores. DISCUSSION: The discussion addresses the possibility that access to care influences reports of diagnosed conditions and touches on issues of comparability in cross-cultural research and the difficulty in clearly distinguishing cultural and system-level factors in the production and measurement of health.     

Caregiver objective burden and assessments of patient-centered, family-focused care for frail elderly veterans

PURPOSE: There is a growing consensus that quality of care for frail elders should include family and be evaluated in terms of patient-centered, family-focused care (PCFFC). Family caregivers are in a unique and sometimes sole position to evaluate such care. In the context of caring for physically frail elders, this study examined the extent to which objective burden was associated with caregiver perceptions of PCFFC and the extent to which it mediated the influence of other variables on perceptions of PCFFC. DESIGN AND METHODS: In a study of frail elderly veterans receiving care in U.S. Department of Veterans Affairs ambulatory primary care clinics, informal caregivers assessed quality of care with 13 questions. Factor analysis of these items revealed an eight-item scale that specifically assessed PCFFC (alpha =.90). Regression analysis identified variables associated with caregiver (N = 210) assessments of PCFFC and the potential mediating effect of objective burden. RESULTS: Caregiver assessments of PCFFC were positively associated with care recipient instrumental activity of daily living limitations (p =.04) and perspectives on the quality of their own patient care (p <.001). Greater objective burden was negatively associated with caregiver assessments of PCFFC (p <.001) and mediated (i.e., reduced) the relationship between care recipient perceptions of the quality of their own patient care and caregiver assessments of PCFFC (DeltaR(2) =.06). IMPLICATIONS: These findings support recommendations for conducting caregiver assessments as part of routine care and highlight the importance of measuring objective burden and expectations for PCFFC in assisting physically frail elders. Primary care providers will require additional training in order to effectively implement and translate such caregiver assessments into clinical practice improvement.     

Care Tasks in the Stress Process for Family Caregivers in Urban China

Objectives: To explore the role of care tasks in the caregiving stress process, this study tested the relationships between distinct care tasks, primary stressors, caregiver burden, and depressive symptoms among caregivers.

Methods: The data were collected from a sample of 754 caregivers who provided care for frail, elderly family members in Shanghai, China. Path analysis was conducted to identify the relationships between the three types of care tasks (monetary support, physical care and emotional care), the caregivers’ background, primary stressors, caregiver burden, and depressive symptoms.

Results: The results show distinct paths through the three types of care tasks in the stress process. Caregivers with higher incomes were more likely to provide monetary support to their care recipients. Being a female caregiver and having greater primary stressors were associated with more involvement in physical care, which predicted higher levels of caregiver burden and further exacerbated depression. The cognitive impairment of care recipients was associated with greater emotional care, with the caregivers who provided more emotional care reporting higher levels of caregiver burden but lower levels of depression.

Conclusions: This study underscores the importance of considering different types of care tasks to properly understand caregiving stress across cultures and societies.

Clinical Implications: This study highlights the need for interventions to alleviate the caregiving stress by helping family caregivers understand the importance of emotional care, training them to appropriately meet the psychological and social needs of their care recipients and providing financial support for caregivers with lower income to purchase respite care services.