Caregiver satisfaction with support services: influence of different types of services

Objectives: This article examines factors influencing satisfaction with support services of caregivers of frail older adults and determines what types of support services are associated with greater satisfaction, controlling for frail individual and caregiver characteristics. Methods: The study includes 291 frail older adults-caregiver dyads from Montreal in which caregivers receive support services. The Client Satisfaction Questionnaire-8 is used to measure caregiver satisfaction with these services.Results: Caregivers receiving information, advice, or emotional support, and those caring for seniors receiving integrated care are more likely to be highly satisfied.Other factors increasing satisfaction are fewer number of health problems of frail individuals, caregiver being the spouse of the frail person, as well as greater caregiver perceived health, autonomy in instrumental activities of daily living, and available social support. Discussion: The results support the importance of integrated care for frail seniors and informational services for their caregivers.     

The Cleveland Alzheimer's managed care demonstration: outcomes after 12 months of implementation

PURPOSE: This demonstration evaluates the effects of integrating Alzheimer's Association care consultation service with health care services offered by a large managed care system. The primary hypothesis is that Association care consultation will decrease service utilization, increase satisfaction with managed care, and decrease caregiver depression and care-related strain. Secondary modifying-effects hypotheses posit that the effects of the intervention will be intensified when patients have not received a firm dementia diagnosis, patients have more severe memory problems, caregivers use other Association services in tandem with care consultation, and caregivers are not patients' spouses. DESIGN AND METHODS: The demonstration is a randomized trial that examines outcomes after a 12-month study period. Interview data from 157 primary family caregivers are combined with data abstracted from medical/administrative records. RESULTS: Support for the primary hypothesis is found for selected, but not all, service utilization outcomes and for caregiver depression. Support for secondary modifying-effects hypotheses is found for satisfaction outcomes and care-related strain outcomes. IMPLICATIONS: Care consultation delivered within a partnership between a managed care health system and an Alzheimer's Association is a promising strategy for improving selected outcomes for patients with dementia and their caregivers.     

Actor and partner effects of self-rated health on life satisfaction among family caregiver couples

ObjectivesThis study examined the dyadic effects of self-rated health on the life satisfaction of family caregivers. The effects of the use of long-term care services were also explored to investigate whether support through care services is associated with the life satisfaction of family caregivers.MethodsThe data were drawn from the sixth wave (2016) of the Korean Longitudinal Study of Aging. Caregivers who used long-term care services for older family members, and spouses of the caregivers, were identified. A total of 81 married caregiver couples were analyzed using the actor-partner interdependence model.ResultsThe study showed that better self-rated health of caregivers was associated with higher levels of life satisfaction (B = 8.87, p < 0.001). Better self-rated health of the caregivers was also associated with higher life satisfaction of their spouses (B = 6.01, p < 0.05). In addition, the results suggested that the use of long-term care services for patients was associated with the life satisfaction of both caregivers (B = 14.57, p < 0.01) and their spouses (B = 12.51, p < 0.05).DiscussionOur findings suggested mutual influences among family caregivers on their life satisfaction. In addition, long-term care services for patients may improve the life satisfaction of other family members. More support through long-term care services for people with care needs is required to increase the life satisfaction of family caregivers. The diverse relationships among family caregivers should be taken into consideration when developing policies and interventions.     

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 .     

Factors influencing the death of the elderly at home in an institution specializing home medical care--analysis of survey of the bereaved family

AIM: To determine factors influencing on the death of the elderly at home in an institution specializing in-home medical care (home death rate: about 80%). METHODS: This study was an anonymous mailed survey of bereaved families of patients (the caregivers) who died using the home medical care setting provided by an institution specializing in home medical care in Japan. We analyzed the relationship of demographics of the patients and the caregivers with such factors as the anxiety of the caregiver and eventual death at home, and that of such factors as perceived quality of home medical care by the caregiver, and satisfaction with home medical care, satisfaction with death bed nursing, regret for death bed nursing. RESULTS: The most significant determinant factor associated with home death was that both patients and caregivers preferred death at home (OR=19.42). Determination coefficients (R(2)) in the multiple linear regression analysis of caregiver's satisfaction with home medical care, satisfaction with death bed nursing and regret for death bed nursing were as high as 0.68, 0.55 and 0.62, respectively. Significant influential factors were: peaceful death, psychological consistency of the caregiver, a good relationship with one's physician and fulfillment of the care service system. CONCLUSIONS: Important components of home medical care and death bed nursing for the realization of death of the elderly at home are 1) peaceful death, 2) psychological consistency of caregivers, 3) a good relationship with one's physician, 4) fulfillment of the care service system.     

Factors Associated with Attendance at Caregiver Support Group Meetings

Four hundred ninety caregivers to dementia victims from 16 states completed questionnaires assessing a range of information including personal, psychosocial and situational characteristics, along with information regarding attendance and perceived helpfulness from support group meetings. A stepwise regression procedure revealed a positive relationship between number of meetings attended and perceived helpfulness of meetings, and length of time providing care, and a negative relationship with caregiver life satisfaction. Implications for future research, nursing home services and intervention strategies are discussed, particularly regarding the unexpected finding that those attending more meetings reported lower life satisfaction.     

Systematic care for caregivers of people with dementia in the ambulatory mental health service: designing a multicentre, cluster, randomized, controlled trial

Background

Care for people with dementia and their informal caregivers is a challenging aim in healthcare. There is an urgent need for cost-effective support programs that prevent informal caregivers of people with dementia from becoming overburdened, which might result in a delay or decrease of patient institutionalization. For this reason, we have developed the Systematic Care Program for Dementia (SCPD). The SCPD consists of an assessment of caregiver's sense of competence and suggestions on how to deal with competence deficiencies. The efficiency of the SCPD will be evaluated in our study.

Methods and design

In our ongoing, cluster, randomized, single-blind, controlled trial, the participants in six mental health services in four regions of the Netherlands have been randomized per service. Professionals of the ambulatory mental health services (psychologists and social psychiatric nurses) have been randomly allocated to either the intervention group or the control group. The study population consists of community-dwelling people with dementia and their informal caregivers (patient-caregiver dyads) coming into the health service. The dyads have been clustered to the professionals. The primary outcome measure is the patient's admission to a nursing home or home for the elderly at 12 months of follow-up. This measure is the most important variable for estimating cost differences between the intervention group and the control group. The secondary outcome measure is the quality of the patient's and caregiver's lives.

Discussion

A novelty in the SCPD is the pro-active and systematic approach. The focus on the caregiver's sense of competence is relevant to economical healthcare, since this sense of competence is an important determinant of delay of institutionalization of people with dementia. The SCPD might be able to facilitate this with a relatively small cost investment for caregivers' support, which could result in a major decrease in costs in the management of dementia. Implementation on a national level will be started if the SCPD proves to be efficient.

Trial Registration

NCT00147693     

Home care for elderly persons: linkages between formal and informal caregivers

Prior research has generally focused on characteristics of elderly persons that predict contact with community services or the volume of services used. In contrast, this study investigates how personal care and home health services are used in relation to assistance from primary kin caregivers. A typology was developed based on task sharing or segregation between kin caregivers and service providers, and four types of informal-formal linkages around these tasks were identified: kin independence, formal service specialization, dual specialization, and supplementation. Findings regarding predictors of the types showed that caregiver and care recipient need variables were most significant in differentiating among them, although caregiver gender also had some discriminatory power.     

Design of medical devices--a home perspective

Health care services are moving out to the community and into the home; e-health services, remote monitoring technology and self-management are replacing hospitalization and visits to medical clinics and custom-tailored medicines are making inroads into normative treatment. These developments have great implications for the scope and design of home health care equipment.The paper discusses the unique nature of home medical devices, from a human-environment-machine perspective, focusing on the nature of users, environment and tasks performed.We call for increased awareness and active continuous involvement of health care personnel together with bioengineers, human factors experts, architects, designers and end users—patients and caregivers—in defining the objectives of health care devices and services at home in terms of “all family” use, integrated into the overall surroundings (“smart home”), and as part of a collaborative patient-physician disease management team.     

Creating a place for caregivers in personal health: the iHealthSpace copilot program and diabetes care

Background

As America’s baby boom generation reaches retirement, the number of elders, and, in turn, the number of lay individuals who support them, will continue to increase. With the important services caregivers provide, it is critical that we recognize and provide assistance to the informal caregivers who play this important role in our society. The network of support provisioned by relatives, partners, friends, and neighbors suggests that the dyadic, unidirectional caregiver–care recipient relationship assumed by caregiver research so far and by resources deployed to assist caregivers may be insufficient to ascertain and meet the needs of the care community.

Methods

In this article, we describe the extension of a Web-based personal health record system, iHealthSpace, for explicitly and openly incorporating caregivers into the care community.

Results

Using this portal, a set of business rules was implemented to support the creation of custodial accounts. These business rules will be used to create modules that support diabetes care in an adult population.

Conclusions

We successfully extended an existing patient portal to accommodate the creation of custodial accounts. We will use this portal to assess the impact of custodial access in the care of older patients with diabetes.     

Effectiveness of the VA-Geriatric Resources for Assessment and Care of Elders (VA-GRACE) program: An observational cohort study

Background

As the Department of Veterans Affairs (VA) healthcare system seeks to expand access to comprehensive geriatric assessments, evidence-based models of care are needed to support community-dwelling older persons. We evaluated the VA Geriatric Resources for Assessment and Care of Elders (VA-GRACE) program's effect on mortality and readmissions, as well as patient, caregiver, and staff satisfaction.

Methods

This retrospective cohort included patients admitted to the Richard L. Roudebush VA hospital (2010–2019) who received VA-GRACE services post-discharge and usual care controls who were potentially eligible for VA-GRACE but did not receive services. The VA-GRACE program provided home-based comprehensive, multi-disciplinary geriatrics assessment, and ongoing care. Primary outcomes included 90-day and 1-year all-cause readmissions and mortality, and patient, caregiver, and staff satisfaction. We used propensity score modeling with overlapping weighting to adjust for differences in characteristics between groups.

Results

VA-GRACE patients (N = 683) were older than controls (N = 4313) (mean age 78.3 ± 8.2 standard deviation vs. 72.2 ± 6.9 years; p < 0.001) and had greater comorbidity (median Charlson Comorbidity Index 3 vs. 0; p < 0.001). VA-GRACE patients had higher 90-day readmissions (adjusted odds ratio [aOR] 1.55 [95%CI 1.01–2.38]) and higher 1-year readmissions (aOR 1.74 [95%CI 1.22–2.48]). However, VA-GRACE patients had lower 90-day mortality (aOR 0.31 [95%CI 0.11–0.92]), but no statistically significant difference in 1-year mortality was observed (aOR 0.88 [95%CI 0.55–1.41]). Patients and caregivers reported that VA-GRACE home visits reduced travel burden and the program linked Veterans and caregivers to needed resources. Primary care providers reported that the VA-GRACE team helped to reduce their workload, improved medication management for their patients, and provided a view into patients' daily living situation.

Conclusions

The VA-GRACE program provides comprehensive geriatric assessments and care to high-risk, community-dwelling older persons with high rates of satisfaction from patients, caregivers, and providers. Widespread deployment of programs like VA-GRACE will be required to support Veterans aging in place.

     

Family caregiver satisfaction with the nursing home after placement of a relative with dementia

OBJECTIVE: This article examines family caregiver satisfaction after nursing home placement of a relative with Alzheimer disease or a related dementia. Determining what contributes to family caregiver satisfaction is a critical step toward implementing effective quality improvement strategies. METHODS: A stress process model is used to study caregiver satisfaction among 285 family caregivers in relation to primary objective stressors (stage of dementia, length of stay, length of time in caregiving role, visitation frequency, involvement in nursing home, and involvement in hands-on care), subjective stressors (expectations for care), caregiver characteristics (education, marital status, familial relationship, workforce participation, distance from nursing home, and age), and organizational resources (rural/urban location, profit/nonprofit ownership, special care unit [SCU] designation, and custodial unit designation). SAS PROC MIXED is used in a multilevel analysis. RESULTS: Higher satisfaction is associated with earlier stage of dementia, greater length of time involved in caregiving prior to institutionalization, higher visitation frequency, less involvement in hands-on care, greater expectations for care, and less workforce participation. DISCUSSION: Multilevel analysis showed that primary stressors are the strongest predictors of satisfaction. Only one caregiver characteristic (work participation) and one organizational resource (rural/urban location) predict satisfaction. SCU designation was unrelated to satisfaction, perhaps because SCUs have less to offer residents in more advanced as opposed to earlier stages of Alzheimer disease. If family satisfaction is to be achieved, family presence in a nursing home needs to give caregivers a sense of positive involvement and influence over the care of their relative.     

Effects of Frequent Hemodialysis on Perceived Caregiver Burden in the Frequent Hemodialysis Network Trials

Background and objectives

Patients receiving hemodialysis often perceive their caregivers are overburdened. We hypothesize that increasing hemodialysis frequency would result in higher patient perceptions of burden on their unpaid caregivers.

Design, setting, participants, & measurements

In two separate trials, 245 patients were randomized to receive in-center daily hemodialysis (6 days/week) or conventional hemodialysis (3 days/week) while 87 patients were randomized to receive home nocturnal hemodialysis (6 nights/week) or home conventional hemodialysis for 12 months. Changes in overall mean scores over time in the 10-question Cousineau perceived burden scale were compared.

Results

In total, 173 of 245 (70%) and 80 of 87 (92%) randomized patients in the Daily and Nocturnal Trials, respectively, reported having an unpaid caregiver at baseline or during follow-up. Relative to in-center conventional dialysis, the 12-month change in mean perceived burden score with in-center daily hemodialysis was −2.1 (95% confidence interval, −9.4 to +5.3; P=0.58). Relative to home conventional dialysis, the 12-month change in mean perceived burden score with home nocturnal dialysis was +6.1 (95% confidence interval, −0.8 to +13.1; P=0.08). After multiple imputation for missing data in the Nocturnal Trial, the relative difference between home nocturnal and home conventional hemodialysis was +9.4 (95% confidence interval, +0.55 to +18.3; P=0.04). In the Nocturnal Trial, changes in perceived burden were inversely correlated with adherence to dialysis treatments (Pearson r=−0.35; P=0.02).

Conclusion

Relative to conventional hemodialysis, in-center daily hemodialysis did not result in higher perceptions of caregiver burden. There was a trend to higher perceived caregiver burden among patients randomized to home nocturnal hemodialysis. These findings may have implications for the adoption of and adherence to frequent nocturnal hemodialysis.     

Efficacy of a multicomponent support programme for the caregivers of disabled persons

Aim

The goal of the present work was to measure the efficacy of a multicomponent programme designed to provide tailored support for the caregivers of disabled persons.

Subjects

A total of 135 caregivers–care receiver dyads were randomly divided into an intervention group (n?=?66) and a control group (n?=?69). One-third of the care receivers were demented, and two-thirds had other diseases.

Setting

Health centres (publicly funded primary health care systems) in 8 rural and urban communities in southeast Finland.

Intervention

The multicomponent support programme for the caregivers consisted of a 2-week rehabilitation period. The control group received standard care.

Outcome measurements

Continuation of the caregiver and care receiver relationship, care receiver mortality at the 2-year follow-up as well as the health-related quality of life (15D scale) and Zung’s depression scale of the caregiver at the 1-year follow-up were evaluated.

Results

At the 2-year follow-up, the caregiver–care receiver relationship was terminated for any reason in 11 cases (17%) in the intervention group, and in 25 cases (36%) in the control group. After adjusting, the primary outcome (i.e., termination of care giving for any reason) indicated statistical significance (p?=?0.04) with a hazard rate of 1.83 (95% confidence interval 1.03–3.29). With a similar adjustment, the difference in mortality and placement to institutional care between the two groups demonstrated a trend towards statistical significance. The caregivers’ health, as related to quality of life and depressive symptoms, remained unchanged in both groups at the 1-year follow-up.

Conclusion

These results indicate that a tailored support programme for caregivers may help the caregiver to continue the caregiver–care receiver relationship and delay institutionalization.     

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.

     

Adult day care for the frail elderly: outcomes, satisfaction, and cost

OBJECTIVES. To assess outcomes and satisfaction among frail elderly day care clients and their informal caregivers and the impact of adult day care on the cost of health services. METHODS. One-hundred eight elderly participants were randomly assigned to the experimental group (immediate admission to an adult day care center) and 104 participants to the control group (3 months on a waiting list). RESULTS. Participants' and caregivers' subjective perceptions of the day center's effects were positive. However, using standard research instruments, there was no evidence of an effect of day center attendance on the client's anxiety, depression, or functional status; on caregiver burden; or on the cost of health services. DISCUSSION. It is difficult to demonstrate objectively the benefits of programs and interventions that are perceived by clients, caregivers, and staff to have positive effects. In future studies, maintenance of high levels of participation should be incorporated as an explicit program goal.     

Development and validation of a screener based on interRAI assessments to measure informal caregiver wellbeing in the community

Background

Informal caregivers are invaluable partners of the health care system. However, their caring responsibilities often affect their psychological wellbeing and ability to continue in their role. It is of paramount importance to easily identify caregivers that would benefit from immediate assistance.

Methods

In this nonexperimental cohort study, a cross-sectional analysis was conducted among 362 informal caregivers (mean age 64.1?years, SD?±?13.1) caring for persons with high care needs (mean age 78.6?years, SD?±?15.0). Caregivers were interviewed using an interRAI-based self-reported survey with 82 items covering characteristics of caregivers including key aspects of wellbeing. A factor analysis identified items in the caregiver survey dealing with subjective wellbeing that were compared against other wellbeing measures. A screener, called Caregiver Wellbeing Index (CWBI), consisting of four items with response scores ranging from 0 to 2 was created. The CWBI was validated in a follow-up study in which 1020 screeners were completed by informal caregivers of home care clients. Clinical assessments of the care recipients (n?=?262) and information on long-term care home (LTCH) admission (n?=?176) were linked to the screener dataset. The association between the CWBI scores and caregiver and care recipient characteristics were assessed using logistic regression models and chi-square tests. The reliability of CWBI was also measured.

Results

The CWBI scores ranging from zero to eight were split in four ‘wellbeing’ levels (excellent, good, fair, poor). In the validation study, fair/poor psychological wellbeing was strongly associated with caregiver reports of inability to continue in their role; conflict with family; or feelings of distress, anger, or depression (P?<?0.0001). Caregivers caring for a care recipient that presented changes in behavior, cognition, and mood were more likely to present fair/poor wellbeing (P?<?0.0001). Additionally, caregivers with high CWBI scores (poor wellbeing) were also more likely to provide care for someone who was admitted to a LTCH (OR 3.52, CI 1.32–9.34) after controlling for care recipient and caregiver characteristics. The Cronbach alpha value 0.89 indicated high reliability.

Conclusion

The CWBI is a valid screener that can easily identify caregivers that might benefit from further assessment and interventions.

     

Caregivers of persons with Alzheimer's Disease: Cultural differences in perceived caregiver burden in Guatemala and Rhode Island

The intent of this study is to illustrate cultural differences in the amount of perceived burden for primary caregivers of persons with Alzheimer's Disease. Caregivers in Guatemala and Rhode Island were given a questionnaire exploring: caregiver well-being, available supports, traditional ideology, and perceived burden. The data indicate that Guatemalans have less institutional and more informal supports available, as compared with USA caregivers. Guatemalan caregivers brought patients to a doctor sooner after the appearance of their first symptoms (0.9±1.0 years versus 1.6±1.8 years) and had poorer perceived health than USA subjects, suggesting a higher level of caregiver burden. Cultural response bias however may account for the difference in perceived health.