The caregiving dyad: Do caregivers’ appraisals of caregiving matter for care recipients’ health?

Caregiving experiences matter for caregivers' own wellbeing, but few studies link caregivers' burden and benefit perceptions with recipient outcomes. Following the stress process model, I prospectively explore how caregivers' experiences shape recipients' mental health. I match US National Health and Aging Trends Study and National Study of Caregivers, employing logistic regression on 781 older adult-informal caregiver dyads. I examine how caregivers' appraisals shape recipients' subsequent depression and anxiety, with caregiver mental health and recipient unmet care need as key covariates. Recipients receiving care from caregivers reporting predominantly benefits are less likely to become depressed than counterparts receiving care from persons reporting predominantly burden. Recipients receiving care from persons reporting benefits even alongside low or moderate burden are also less likely to become anxious. Recipient unmet care need, but not caregiver mental health, is associated with recipient mental health. Improving caregiver conditions may have benefits for both dyad members.     

The Aging Brain Care Medical Home: Preliminary Data

The Aging Brain Care (ABC) Medical Home aims to improve the care, health outcomes, and medical costs of Medicare beneficiaries with dementia or depression across central Indiana. This population health management program, funded by the Centers for Medicare and Medicaid Services Innovation Center, expanded an existing collaborative dementia and depression care program to serve 1,650 older adults in a local safety‐net hospital system. During the first year, 20 full‐time clinical staff were hired, trained, and deployed to deliver a collaborative care intervention. In the first 18 months, an average of 13 visits was provided per person. Thirty percent of the sample had a diagnosis of dementia, and 77% had a diagnosis of depression. Sixty‐six percent of participants with high depression scores (Patient Health Questionnaire‐9 score ≥14) had at least a 50% reduction in their depressive symptoms. Fifty‐one percent of caregivers of individuals with dementia had at least a 50% reduction in caregiver stress symptoms (measured by the Healthy Aging Brain Care Monitor‐Caregiver Version). After 18 months, the ABC Medical Home has demonstrated progress toward improving the health of older adults with dementia and depression. Scalable and practical models like this show initial promise for answering the challenges posed by the nation's rapidly aging population.     

“Falling between the cracks”: Experiences of Black dementia caregivers navigating U.S. health systems

In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia (PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries-old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers' experiences and well-being. Focus groups were held with Black caregivers (N = 19) from the United States to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were constructed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is “broken.” Gaps in the health system can lead to people [as one caregiver passionately expressed] “falling between the cracks,” in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a “person of color” contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black persons living with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs.     

Caregivers' Perceived Roles in Caring for Patients With Heart Failure: What Do Clinicians Need to Know?

BackgroundPoor self-management of heart failure (HF) is an essential contributor to poor outcomes. Caregivers are involved in the care of HF patients, but caregiver interventions intended to improve the outcomes of patients have been largely unsuccessful. Improved knowledge of caregivers' desired roles in care may improve future interventions.Methods and ResultsThis qualitative study of 20 caregivers of HF patients recruited from an academic medical center used a general inductive approach, with insights from role theory, to analyze the data. Caregivers perceived themselves as health care managers and care plan enforcers, advocates for quality of life, and experts in the lived experience of HF at home. However, they encountered role strain (expectations of role exceed ability to perform role) and role conflict (incompatible or contradictory roles) when it seemed that these roles were incompatible with those that they felt the health care system saw them in. This resulted in expressions of anger and distrust towards the health care system.ConclusionsClinicians caring for patients with HF can seek to better empower and enable this care. Involving caregivers in disease management research and assessing their roles before intervention may hold promise for enabling and empowering caregivers to improve outcomes of HF patients.     

Challenges impacting on the quality of care to persons living with HIV/AIDS and other terminal illnesses with reference to Kanye community home-based care programme

HIV/AIDS has been found to be a challenging disease to humanity, its challenge spin-offs falling especially on to the caregivers of those infected and affected by the virus. This paper aims to discuss the challenges influencing the state of caregiving in the Kanye community home-based care (CHBC) programme in Botswana. The study was qualitative in design and explorative in nature, involving 82 primary caregivers in focus group discussions, and 5 CHBC nurses in individual interviews. Caregivers were found challenged by lack of community networks support, inadequate sanitary and care packages, poor shelter compromising privacy, inadequate income and food for their clients, inadequate care motivation as their volunteerism does not attract any payment, inadequate health personnel to offer psychosocial support like counselling, and an unconducive caring environment generally. Putting in place policies to redress caregivers' poverty, helping caregivers start income-generating projects, increasing community assistance and caregiving facilities are recommended as factors to address caregiver challenges.     

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.     

Quality of life,social support,and knowledge of disease in women with rheumatoid arthritis

Objective

To examine the relationships between the quality of life (QOL) of women with rheumatoid arthritis (RA) and 1) their perceived levels of social support and 2) their primary caregivers' knowledge of RA and its treatment.

Methods

Women aged 40–60 years with established RA completed validated questionnaires on health status (Arthritis Impact Measurement Scales 2) and satisfaction with the levels of social support from their primary caregiver (Significant Others Scale A). In addition, both the caregivers and patients independently completed questionnaires that were designed to elicit knowledge of RA and its treatment.

Results

Fifty‐eight patients and their primary caregivers completed the questionnaires. Analysis of the patients' health status demonstrated widespread biopsychosocial impairments. Arthritis pain, identified as the poorest health status dimension, was associated with the lowest levels of satisfaction, and received the highest priority for health status improvement. In contrast, the patients reported highest levels of satisfaction with social support from family and friends. Positive associations between social support variables and a number of QOL measures were observed. Both the caregivers and the patients displayed limited knowledge of RA and its treatment. Associations between the levels of knowledge and the patients' QOL measures were not observed.

Conclusion

In this study of women with RA and their caregivers, a limited knowledge of disease did not appear to impact QOL measures. However, failure to detect an association between knowledge of disease and QOL may have been influenced by a combination of the relatively small study numbers and insufficient variation in caregivers' knowledge, such that a floor effect existed.

     

What is a common factor in different areas?: The case of depression among caregivers of the frail elderly in Sapporo and Kochi,Japan

Aim: Depression affecting caregivers is a risk factor for discontinuing at‐home care. The present cross‐sectional study was conducted to evaluate factors related to depression among family caregivers. Methods: A cross‐sectional study was conducted to evaluate factors related to depression among family caregivers of the frail elderly. The study included caregivers whose relatives received periodic visits from a nurse from one of seven Sapporo‐based home‐visiting nursing service stations in October 2008 or from one of nine Kochi‐based home‐visiting nursing service stations between June 2009 and March 2010. Caregivers were asked to answer a self‐administered questionnaire about various factors that might affect their depression and to complete a Center for Epidemiologic Studies Depression Scale evaluation. We analyzed 127 pairs of responses in total. Results: After we adjusted the results for the caregivers' gender and age, the factors that decreased the risk of depression in the Sapporo group related to relieving the stress that results from being a caregiver (OR = 0.12, 95%CI = [0.03, 0.42]) and the ability to independently pay more than ¥10 000 for part of care service costs (OR = 0.17, 95%CI = [0.05, 0.58]). In contrast, feeling ill was a factor that increased caregivers' risk of depression in the Kochi group (OR = 4.23, 95%CI = [1.29, 13.9]), but not in Sapporo group (OR = 2.53, 95%CI = [0.91, 7.08]). Caregivers in the Sapporo group were more likely to feel ill (P < 0.01) than their counterparts in Kochi. Conclusion: The Japanese government should take measures to reduce caregivers' depression. Otherwise family members will increasingly discontinue to provide at‐home care. Geriatr Gerontol Int 2012; 12: 230–237.     

Effects of cognitive function and depressive mood on the quality of life in Chinese Alzheimer's disease patients in Hong Kong

Aim: In view of the paucity of data on the quality of life (QOL) in Chinese Alzheimer's disease (AD) patients, we investigated the effects of cognitive function and depressive mood on QOL among our Chinese AD patients in Hong Kong, using the Cantonese Chinese version of Quality of Life in Alzheimer's disease (QOL‐AD). Methods: This was a cross‐sectional study. The Cantonese Chinese version of QOL‐AD was adapted from the Mandarin Chinese and English versions of QOL‐AD, and was administered to 111 AD patients and their caregivers. Results: The Cantonese Chinese version of QOL‐AD showed good internal consistency, test–retest and inter‐rater reliability. The patients' and caregivers' reports of QOL‐AD were moderately correlated (r = 0.516, P < 0.001). Both QOL‐AD scores from patient and caregiver reports varied significantly in relation to the severity of cognitive impairment, being lowest in the subgroup with Mini‐Mental State Examination scores of 10 or less. The mean QOL‐AD scores from both patient and caregiver reports were also significantly lower in the depressed (Geriatric Depression Scale [GDS] scores ≥15) than non‐depressed groups (GDS scores ≤15) (QOL‐AD patient report 23.8 and 34.2, respectively, P < 0.001, Student's t‐test; QOL‐AD caregiver report 28.9 and 31.0, respectively, P < 0.05, Student's t‐test). General linear model analyses showed that only the MMSE and GDS scores were independent significant factors associated with the patient but not the caregiver reports of the QOL‐AD. Conclusion: Among Chinese AD patients in Hong Kong, depressive mood and low MMSE score adversely affect the QOL‐AD from the patient but not the caregiver perspectives. Geriatr Gerontol Int 2011; 11: 69–76.     

Medicare initiatives to improve heart failure care: an introduction

Purchasers of health care, patients, physicians, and other health care professionals are increasingly seeking to evaluate quality of health care. Scattered reports have suggested that there is currently marked variation in evaluation and treatment of heart failure and substantial gaps between guideline recommendations and care delivered to heart failure patients. Heart failure is the most common discharge diagnosis for Medicare beneficiaries and yet, until recently, relatively little national information was available to describe the quality of care and to identify opportunities to improve practice. To address the need to evaluate care of patients with heart failure and support national, state, and local efforts to improve care and outcomes, the Health Care Financing Administration has initiated three programs that stretch across much of the continuum of care: the National Heart Failure Quality Improvement Project, focusing on inpatient care; the Heart Failure Practice Improvement Effort (HF PIE), a pilot outpatient effort in 11 states; and the 2001 requirement for Medicare+Choice Organizations to initiate quality improvement efforts for their heart failure patients. This paper is the first in a series that will provide information about these programs. We hope that this series will stimulate discussion on how clinicians can join these national efforts to improve the care and outcomes of patients with heart failure. (c)2000 by CHF, Inc.     

The Legacy Project Intervention to Enhance Meaningful Family Interactions: Case Examples

Manualized reminiscence and life review therapies are supported as an evidence-based, effective treatment for depression among older adults, but this therapeutic approach is usually individually administered and has rarely been applied in palliative care settings. We combined mutual reminiscence and life review with engagement in meaningful activity and examined the efficacy of this family-based dyadic intervention to decrease caregiving stress and increase family communication. Seventeen individuals living with chronic, life-limiting illnesses in the community and their family caregivers received three home visits with a Master's level interventionist. During these sessions and through structured homework activities, the interventionist actively worked with the family to construct a personal Legacy Project, usually a scrapbook with photos, a cookbook, or audiotaped stories that celebrated the life of the ill individual. All participants in the intervention group initiated a Legacy Project and reported that Legacy activities improved family communication. Participation in Legacy creation also resulted in increased positive emotional experiences in patient and caregiver groups. These results are illustrated through careful examination of three case studies.     

Can family-centered programing mitigate HIV risk factors among orphaned and vulnerable adolescents? Results from a pilot study in South Africa

Let's Talk is a structured, family-centered adolescent HIV prevention program developed for use in South Africa using key components adapted from programs successfully implemented in the US and South Africa. It is designed to address individual HIV transmission risk factors common among orphaned and vulnerable adolescents, including elevated risk for poor psychological health and sexual risk behavior. These efforts are accentuated through parallel programing to support caregivers’ mental health and parenting skills. Twelve Let's Talk groups, each serving approximately 10 families, were piloted by two local community-based organizations in Gauteng and Kwa-Zulu Natal provinces, South Africa. Face-to-face interviews were conducted among participating caregivers and adolescents at baseline and three months post-intervention to explore the potential effects of the program on intermediate outcomes that may support HIV preventive behavior. Specifically, generalized estimation equations were used to estimate average change on HIV prevention knowledge and self-efficacy, caregiver and adolescent mental health, and family dynamics. Among the 105 adolescents and their 95 caregivers who participated in Let's Talk and completed both surveys, statistically significant improvements were found for adolescents’ HIV and condom use knowledge as well as condom negotiation self-efficacy, but not sexual refusal self-efficacy. Both caregivers and adolescents demonstrated significantly better mental health at post-test. Adolescent/caregiver connection and communication about healthy sexuality also improved. These preliminary results highlight the potential of HIV prevention interventions that engage caregivers alongside the vulnerable adolescents in their care to mitigate adolescent HIV risk factors. A more rigorous evaluation is warranted to substantiate these effects and identify their impact on adolescents’ risk behavior and HIV incidence.     

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 .     

Predictors of the decision to yield care of a person with dementia

Objective: The aim of this study is to determine the relative contributions of caregiver and patient characteristics to the subsequent decision to yield care of a person with dementia. Method: The sample comprised 158 people with dementia and their spouse caregivers. The inclusion criteria were that the patient had a diagnosis of Alzheimer's disease, the patient and caregiver were both at least 65 years of age, were co‐resident, that the caregiver was the spouse of the patient, and was actively providing care. Caregiver measures were the Geriatric Depression Scale, SF36, Adelaide Activities Profile, self‐rated health, use of respite services and time as a caregiver. Patient measures were the Functional Dementia Scale, Adelaide Activities Profile, and time since diagnosis. Age and sex were also recorded. Data were obtained by personal interview with caregivers. Two years later, all caregivers were re‐contacted by telephone. At this time 60 (38%) were still providing care; the remaining 98 (62%) had yielded their role to formal institutional care, on average 11.2 months previously. Results: Caregiver characteristics significantly associated with yielding care included greater age, greater use of respite services, less social activities, poorer mental health and greater depression. Patient characteristics significantly associated with yielding care included greater dementia severity, lower activity level, and more frequent incontinence. Conclusion: Dementia severity was the key predictor of the decision to relinquish care. However, it is important to recognise the full range of factors that might indicate that a caregiver is in need of assistance and might be close to yielding the role.     

Predictors of adherence to a skill-building intervention in dementia caregivers

BACKGROUND: Treatment adherence is a widely recognized problem in health services but understudied in caregiver intervention research. This study examines caregiver sociodemographic and psychological characteristics, patient illness severity, and treatment implementation factors as predictors of caregiver adherence to a skills training intervention to help families manage dementia care problems at home. METHODS: The sample consisted of 105 caregivers randomized to the Home Environmental Skill-Building Program at the Philadelphia site of the National Institutes of Health (NIH) Resources for Enhancing Alzheimer's Caregiver Health (REACH I). The intervention, implemented by occupational therapists, consisted of education, problem solving, communication, environmental and task simplification techniques, and home modifications. Adherence was measured by a proportion score representing the percentage of strategies used by participants compared to the total number of strategies prescribed during intervention (Strategy Use). RESULTS: Regression analysis with intraclass correlation adjustment for interventionist effects revealed that caregivers with better physical health (p <.001), greater treatment exposure (p <.001), more problem areas addressed (p =.012), and for whom more active therapeutic techniques (role play) were used (p =.004) demonstrated greater adherence. Other caregiver characteristics, patient cognitive impairment, and troublesome behaviors were not significantly related to caregiver adherence. CONCLUSIONS: Modifiable caregiver and treatment implementation factors, including active engagement of caregivers, were associated with adherence, whereas patient characteristics were not. Caregivers with poor health may be at risk for not benefiting from intervention, suggesting that efforts, including instruction in preventive care and allocating time to attend to their own health care needs, be directed towards improving their health.     

Pediatric Asthma: Caregiver Health Literacy and the Clinician's Perception

Health literacy was assessed in pediatric asthma caregivers attending a university-based clinic. The medical provider's perception of caregiver health literacy was also examined. Eighty-six percent of the caregivers had adequate health literacy, 4% and 10% had marginal and inadequate health literacy, respectively. Health literacy was significantly higher for caregivers who were younger (p = 0.039) and had a higher level of education (p = 0.037). An agreement analysis revealed moderate agreement between provider perception of caregiver's health literacy and measured health literacy (Kappa = 0.51). The results suggest that medical providers may not accurately assess caregivers' actual health literacy level.     

Medicare payment policy in skilled nursing facilities: Lessons from a history of mixed success

The current policy environment for rehabilitation in skilled nursing facilities (SNFs) is complex and dynamic, and SNFs are facing the dual challenges of recent Medicare payment policy change that disproportionately impacts rehabilitation for older adults and the COVID-19 pandemic. This article introduces an adapted framework based on Donabedian's model for evaluating quality of care and applies it to decades of Medicare payment policy to provide a historical view of how payment policy changes have impacted rehabilitation processes and patient outcomes for Medicare beneficiaries in SNFs. This review demonstrates how SNF responses to Medicare payment policy have historically varied based on organizational factors, highlighting the importance of considering such organizational factors in monitoring policy response and patient outcomes. This historical perspective underscores the mixed success of previous Medicare policies impacting rehabilitation and patient outcomes for older adults receiving care in SNFs and can help in predicting SNF industry response to current and future Medicare policy changes.