Informal Caregiver Burden Research Articles

Can formal elderly care stimulate female labor supply? The Japanese experience

This study analyzes the impacts of the Japanese Long-Term Care Insurance (LTCI), a decade after its launch, with respect to the female labor supply in Japan. The radical program has caused the emergence of markets for various care services apart from permanent institutional care, which is only a major formal care sector in many developed countries. The availability of various formal care services can stimulate female labor supply through a reduction of the burden of informal caregiving. To investigate the impacts of the LTCI, we compare the labor market behavior of females who face requirements for elderly care in their household for three periods—before the launch of the LTCI, four years after the launch, and ten years after the launch. Our empirical analysis indicates positive effects of the launch and diffusion of the LTCI on female labor supply. As a result of the LTCI, care for male elders is no longer an obstacle for female labor supply, but care for female elders is still burdensome. We also find that the care requirement reduces the probability of being a regular worker; however, regular workers are more likely to utilize formal care, whereas many nonregular workers provide informal care by themselves.

The subjective burden of informal caregivers of persons with dementia: extended validation of the German language version of the Burden Scale for Family Caregivers (BSFC)

Objective: In research as well as in the practice of caregiver counselling, the subjective burden of family caregivers is considered an important characteristic of home care. The objective of the present study was to provide an extended validation of the German language version of the Burden Scale for Family Caregivers (BSFC) published in 2001.Methods: Extended validation was performed using medical, interview, and health insurance data of 351 informal caregivers and their relatives who had dementia. Cronbach's alpha was calculated to assess the internal consistency of the items, and an exploratory factor analysis was conducted to determine the structure of the BSFC. The discriminatory power and item difficulties of the 28 BSFC items were examined. Five research questions addressed construct validity. Question six addressed the BSFC score as a potential predictor of institutionalization at a follow-up time of 2.5 years (predictive validity).Results: Exploratory factor analysis indicated that the BSFC had a single-factor structure. Cronbach's alpha for the total scale was 0.93. A significant increase in the BSFC score was observed when the severity of cognitive impairment increased, persons with dementia showed disturbing behaviour, caregivers were diagnosed with depression, care requirements increased, or the family caregiver and the person with dementia lived together. Caregiver burden emerged as a significant predictor of institutionalization. The validity of the BSFC was confirmed by the results.Conclusion: The BSFC score allows for a valid assessment of the total caregiver burden in both research and practice. The BSFC is available for free in 20 languages (http://www.caregiver-burden.eu).

Cost and burden of informal caregiving of dependent older people in a rural Indian community.

BackgroundLack of state supported care services begets the informal caregiving by family members as the mainstay of care provided to the dependent older people in many Low and Middle Income Countries (LMICs), including India. Little is known about the time spent on caregiving, its cost and the burden experienced by these informal caregivers. We aimed to estimate the costs of informal caregiving and to evaluate the nature as well as correlates of caregivers’ burden in a rural Indian community.MethodsWe assessed 1000 people aged above 65 years, among whom 85 were dependent. We assessed their socioeconomic profiles, disability, health status and health expenditures. Their caregivers’ socio-demographic profiles, mental health, and the time spent on caregiving were assessed using standard instruments. Caregiver’s burden was evaluated using Zarit Burden Scale. We valued the annual informal caregiving costs using proxy good method. We employed appropriate non-parametric multivariate statistics to evaluate the correlates of caregivers’ burden.ResultsAverage time spent on informal caregiving was 38.6 (95% CI 35.3-41.9) hours/week. Estimated annual cost of informal caregiving using proxy good method was 119,210 US$ in this rural community. Mean total score of Zarit burden scale, measuring caregivers’ burden, was 17.9 (95% CI 15.6-20.2). Prevalence of depression among the caregivers was 10.6% (95% CI 4.1-17.1%). Cerebrovascular disease, Parkinson’s disease, higher disability, insomnia and incontinence of the dependent older people as well as the time spent on helping Activities of Daily Living and on supervision increased caregiver's burden significantly.ConclusionsCost and burden of informal caregiving are high in this rural Indian community. Many correlates of burden, experienced by caregivers, are modifiable. We discuss potential strategies to reduce this burden in LMICs. Need for support to informal caregivers and for management of dependent older people with chronic disabling diseases by multidisciplinary community teams are highlighted.

Determinants of geriatric patients’ quality of life after stroke rehabilitation

Objectives: Geriatric patients’ physical disabilities, dependency on care, and possible psychological ill-being may negatively affect both the patient's quality of life and the informal caregiver burden. Focusing on this interrelationship which can be particularly prominent in geriatric patients with stroke, the objective of this study was to identify determinants of patients’ quality of life and informal caregiver burden.Method: This is a prospective, multicentre, cohort study. Data were collected in 84 geriatric home-dwelling patients with stroke three months after their rehabilitation period in skilled nursing facilities (SNFs). We assessed patients’ quality of life, depressive complaints, neuropsychiatric symptoms, balance, (instrumental) activities of daily living, and informal caregiver burden. Linear regression models were constructed to study the association between the variables.Results: For several domains, high quality of life of these geriatric patients was associated with high functional independence, less neuropsychiatric symptoms, and less depressive complaints. Informal caregiver burden was not associated with patients’ quality of life, but patients’ neuropsychiatric symptoms were a significant determinant of high informal caregiver burden.Conclusion: The presence of neuropsychiatric symptoms (more specifically depressive complaints) negatively affects the quality of life of geriatric patients. Their neuropsychiatric symptoms also affect caregiver burden. Health care professionals in SNFs can play an important role in providing the necessary psychosocial support and aftercare.

Quantifying the burden of informal caregiving for patients with cancer in Europe

Informal caregivers for patients with cancer provide critical emotional and instrumental support, but this role can cause substantial burden. This study expands our understanding of cancer-related caregiving burden in Europe. Caregivers (n = 1,713) for patients with cancer and non-caregivers (n = 103,868) were identified through the 2010 and 2011 European Union National Health and Wellness Survey, administered via the Internet to adult populations in France, Germany, Italy, Spain, and the United Kingdom. Respondents completed measures of sociodemographics and health behaviors, health-related quality of life (using SF-12v2), work productivity and activity impairment (using WPAI), healthcare resource use (emergency room visits, hospitalizations, and traditional provider visits), and reported diagnosis of stress-related comorbidities (depression, anxiety, insomnia, headache, migraine, and gastrointestinal problems). Two-sided tests of means or proportions compared caregivers against non-caregivers. Multivariable regression models, comparing caregivers for patients with any cancer vs. non-caregivers on all health outcomes, adjusted for covariates (age, sex, college, income, marital status, employment, body mass index, alcohol, smoking, and Charlson comorbidity index). Caregivers for patients with cancer vs. non-caregivers reported significant (P < 0.05) impairment across all health outcomes, even after adjusting for several confounds (e.g., 3.26-point lower mental health status, 0.043-point lower health utilities, 1.46 times as much work impairment, and 1.97 times the odds of anxiety). Caregivers for patients with cancer experienced significant impairments. These findings reinforce the need for enhancing our understanding of the caregiving experience and developing supportive and personalized multicomponent interventions for caregivers, given their pivotal role in providing support for patients.

Abstract W MP105: Long Term Stroke Outcome and Caregiving Among Mexican Americans (MA) and Non-Hispanic Whites (NHW): The Population-Based Brain Attack Surveillance in Corpus Christi (BASIC) Study

Background: Long term stroke outcomes in MA are understudied, and the role of informal caregiving and caregiver strain in this population is unknown. We report a pilot study of long-term outcomes in BASIC. Methods: Patients previously interviewed at 90 days post-stroke were invited to participate in a telephone survey related to their 6 or 12 month post-stroke activities of daily living (ADLs) during March-May 2013. ADL score (average of 7 items, range 1-4) was analyzed by self-reported ethnicity using repeated measures models. In a separate sample interviewed at 90 days, patients were asked about willingness to participate in longer term follow-up and a subset of caregivers responded to the caregiver strain index (CSI, range 1-13, higher is worse). Results: Among patients alive at the time of interview, 87% of 39 MA and 74% of 19 NHW participated in the 6 month interview, and 84% of 32 MA and 88% of 8 NHW participated in the 12 month interview. No patients refused at either time point; the remainder could not be contacted. The figure shows trajectories of ADL score by ethnicity, and worsening scores among MA over time. Interest in longer-term follow-up was high (96% of 25 NHWs and 97% of 38 MAs). Caregivers of MA stroke survivors were most often children (41%) followed by spouses (36%), but were spouses (43%) followed by children (29%) for NHWs. Of 29 caregivers interviewed, 54% of MA and 57% of NHW reported being strained (CSI≥7). Caregiver strain was associated with 90-day ADL score: prevalence ratio = 1.34, 95%CI (1.01, 1.76) for 1 unit increase in ADL score. Conclusions: Our data demonstrate the feasibility of recruiting MA stroke survivors for long-term outcome assessments and suggests that MAs have worse functional outcome and greater functional declines than NHWs. The informal caregiver burden is related to functional outcome and is high in both ethnic groups.

Quality of life and burden of informal caregivers of stroke survivors

Abstract Stroke rehabilitation has concentrated on patient-focused intervention, which has reduced the level of disabilities and has increased the number of stroke survivors being managed at home by caregivers. This study was aimed at determining the level of strain experienced by the caregivers of stroke survivors and the quality of life (QoL) of these caregivers. The QoL and caregiving burden among informal caregivers of stroke survivors seen at the physiotherapy outpatient clinic of two hospitals in south-western Nigeria were documented. Participants completed the Personal Wellbeing index for QoL measurement and Modified Caregivers Strain Index for measurement of Caregivers Burden Score. A total of 130 informal caregivers of stroke survivors participated in this study. The mean age of caregivers was 41.1 ± 14.0 years, while that of stroke survivors was 60.4 ± 10.9 years. Among the stroke survivors, 75 (57.8%) were female, whereas 74 (56.9%) of the caregivers were males. The results showed that caregivers' burden was inversely correlated to their QoL (p

A Pilot Study Examining the Awareness, Attitude, and Burden of Informal Caregivers of Patients With Dementia

Pakistan is 1 of 5 countries with the highest projected increase in prevalence of dementia in the Asia Pacific region (Access Economic, 2006), where there is a lack of structured support network for caregivers in general and for dementia caregivers in specific. The caregivers and other related individuals predominantly rely on traditional familial support for caregiving. This approach places immense burdens on the familial caregivers (Shaji, 2009). In Pakistan, there is paucity of research evidence on care of patients with dementia and the needs of caregivers dealing with such patients. This study explores awareness among caregivers, their attitudes toward family members suffering from dementia, and their experience of burden. In-depth interviews were conducted with 12 caregivers of patients diagnosed with dementia in Rawalpindi/Islamabad Pakistan. There was a considerable lack of awareness about dementia as an illness among the caregivers. They reported a conflict between emotional and religious commitments to nurture older adult relatives and their experience of psychological, physical, and economic burden, resulting in occasional episodes of carelessness and violence toward them. The study indicated that women, particularly those who were employed outside of the home, reported higher levels of stress. It is suggested that support from extended family in all forms was perceived as a concrete form of stress relief by the primary caregiver. The findings of this study indicate that the social and financial burden of dementia on families of caregivers in Pakistan may be exacerbated if they do not have support. This indicates a need for multipronged intervention from both government and nongovernment organizations, as well as the community, to develop programs for caregivers that are nested within the cultural context of filial piety in Pakistan. These strategies should also be gender sensitive, giving priority to more at-risk groups.

The effect of innovative home care projects on the perceived burden of informal caregivers: a follow up study

Purpose/objectives: The Belgian National Institute for Health and Disability Insurance (NIHDI) is interested in delaying institutionalization of older persons. Informal caregivers play an important role in maintaining the health, well-being, functional performance and quality of life of older people living at home. The aim of this paper is to identify whether innovative projects in home care are statistically associated with decreasing the informal caregiver’s perceived burden. Background/Methods: The study uses the interRAI HC instrument and a shorter version of the original 22-Zarit Burden Interview. In this ongoing study we have a population of 4346 frail older persons who have an informal caregiver and who are benefiting from innovative projects in home care. Through multivariate logistic regression researchers analyze the effect of the projects in the burden of caregivers. This method enables researchers to take into account factors such as the older person’s cognitive functioning, ADL performance, depressive symptoms, as well as the informal caregivers’ characteristics. Conclusions: This research will provide knowledge on perceived burden and will show whether some types of interventions may have a positive effect on decreasing the burden in giving care. This is important information for home care agencies but also useful information for policy makers at a societal level.

Burden Incurred by Patients and Their Caregivers After Outpatient Surgery: A Prospective Observational Study

The burden of patients and their caregivers after outpatient surgery has not been fully examined. The number of outpatient surgeries has dramatically increased in the last several years, particularly in the orthopaedic sector. Patients undergoing outpatient orthopaedic procedures may be expected to have more postdischarge pain than those undergoing nonorthopaedic outpatient procedures. In light of this, assessment of patient and caregiver expectations and actual burden after discharge is of importance. We assessed the impact of outpatient surgery on recovery of patients and their caregivers in the postoperative period by determining (1) expected versus actual time to resume daily activities, including work; (2) expected versus actual recovery at 7 and 30days postoperatively; and (3) the number of caregivers that felt emotional or physical disturbances from caring for outpatients. Forty-four adult patients undergoing outpatient surgical procedures and their primary caregivers were enrolled in this prospective survey study, of which 30% were orthopaedic patients. Surveys assessing postoperative recovery were given to patients at six time points, on Postoperative Days 0 to 3, 7, and 30. Surveys assessing the burden of informal caregiving were given to each patient's primary caregiver at four time points, on Postoperative Days 1 to 3 and 7. The enrollment rate was 79% (44 enrolled of 56 approached) and the survey response rate was 100% for patients and 93% (41 of 44) for caregivers. We found that 16 of 44 patients (36%) needed more time than originally anticipated to resume their daily activities and three of 29 patients (10%) needed more time off from work than originally anticipated. Patients were approximately 66% and 88% fully recovered 7 and 30days after surgery, respectively. The primary caregivers noted disturbances in emotional (nine of 43, 21%) and physical (17 of 43, 40%) aspects of their daily lives while providing care for patients. Our surveyed patients were from multiple surgical services; however, our results may be generalized to an orthopaedic population, although they may underestimate actual results for this population given their generally higher pain scores. Patients may take longer to recover from outpatient surgery than previously recognized. As increased pain and prolonged recovery may be associated with increased caregiver burden, these data are of particular significance to the outpatient orthopaedic surgical population. Informal caregiving after outpatient surgery may be an unrecognized physical and psychologic burden and may have a significant societal impact. Level II, prognostic study. See Instructions for Authors for a complete description of levels of evidence.

Anxiety and Depression Associated With Caregiver Burden in Caregivers of Stroke Survivors With Spasticity

ObjectiveTo investigate the relationship between anxiety/depression and caregiver burden in informal caregivers of stroke survivors with spasticity. DesignData were collected via online surveys from informal caregivers 18 years or older who cared for stroke survivors. SettingInternet-based survey. Participants2007 through 2009 U.S. National Health and Wellness Survey database or Lightspeed Research general panel respondents (N=153). InterventionsNot applicable. Main Outcome MeasuresAnxiety and depression were self-reported by the caregiver as a physician diagnosis. Depression severity was measured by the Patient Health Questionnaire-9 (PHQ-9). Caregiver burden was measured by the Oberst Caregiving Burden Scale (OCBS) and the Bakas Caregiving Outcomes Scale (BCOS). Logistic regression analyses were conducted with anxiety, depression, and the PHQ-9 depression severity categories as a result of each caregiver burden scale. ResultsData were analyzed for 153 informal caregivers; they were mostly women (70.6%) and white (78.4%), with a mean age of 51.6 years. For every 1-point increase in the OCBS Difficulty Scale, the odds of anxiety or depression were 2.57 times as great (P<.001) and 1.88 times as great (P=.007), respectively. The odds of PHQ-9 severe depression versus all other categories combined were 2.48 times as great (P<.001). For every 1-point decrease in the BCOS, the odds of anxiety or depression were 2.43 times as great (P<.001) and 2.27 times as great (P=.002), respectively. The odds of PHQ-9 severe depression versus all other categories combined were 4.55 times as great (P<.001). ConclusionsAs caregiver burden increases, caregivers are more likely to have anxiety and depression. Depression severity also increases. Providing treatment to stroke survivors with spasticity that lessens the time and more importantly, the difficulty of caregiving may lead to a reduction in caregiver anxiety and depression.

Difficulties, coping strategies, satisfaction and burden in informal Portuguese caregivers

To characterise the main difficulties, coping strategies, sources of satisfaction and levels of burden disclosed by informal caregivers of older people who are dependent due to physical and mental causes, in the Portuguese context and to compare the impact between caregivers for older people with physical dependence and caregivers for older people with mental dependence. Caring for a dependent older person is a complex process that puts two people in interaction, each with their own traits and their own histories of private life. When performing this role, the care provider needs to know how to deal with difficulties through a range of coping strategies. The outcome of this relationship may result in burden as a result of the volume of care, the complexity of care or the caregiver's inability to provide needed care. Caring for a family member can also be a source of satisfaction thanks to the pleasure of giving back and/or providing well-being. This is a quantitative, analytical and correlational study. This study was conducted among two distinct groups-caregivers of older people without dementia (physical impairment) and caregivers of patients with dementia (impairment of a predominantly cognitive nature). Data were collected by administering a previously defined questionnaire that sought to gather various sorts of information (sociodemographic, clinical and environmental) and that included certain specific instruments, such as dependency ratio, cognitive assessment tests, an index of difficulties, a satisfaction index, an index of coping strategies and a burden scale. The sample consisted in 184 caregivers over 40years of age, of which, 101 cared for dependent people without cognitive impairment and 83 cared for people with dementia. Most caregivers were women (87%), most were married (78·8%), with a low level of education (33·7% did not complete primary school and only 7·1% had any postsecondary education). Most were spouses or daughters (75·5%). The caregivers of older patients with dementia had lower levels of satisfaction, with a mean difference of 12·95 percentage points, p<0·001. It appears that caring for older people with dementia implies a greater burden, with a mean difference of 15·4 percentage points, p<0·001. There is a strong correlation between difficulties and burden (r=0·89, p<0·001) and between the effectiveness of coping strategies and satisfaction (r=0·92, p<0·001). This study suggests that caregivers of older people with dementia are more vulnerable due to their higher levels of burden, which are associated with higher levels of difficulties and reduced sources of satisfaction. These data are essential for the management and implementation of health programmes that can reduce the vulnerability of caregivers. Programmes should address caregivers' difficulties and burden as a way to promote satisfaction with providing care.

Factors Impacting on the Burden of Informal Caregiving among Elderly Community Care-recipients

Factors Impacting on the Burden of Informal Caregiving among Elderly Community Care-recipients

Informal Social Support and Caregiver Burden of Caregivers of Elderly with Dementia

Informal Social Support and Caregiver Burden of Caregivers of Elderly with Dementia

Convoys of care: Theorizing intersections of formal and informal care

Although most care to frail elders is provided informally, much of this care is paired with formal care services. Yet, common approaches to conceptualizing the formal–informal intersection often are static, do not consider self-care, and typically do not account for multi-level influences. In response, we introduce the “convoy of care” model as an alternative way to conceptualize the intersection and to theorize connections between care convoy properties and caregiver and recipient outcomes. The model draws on Kahn and Antonucci's (1980) convoy model of social relations, expanding it to include both formal and informal care providers and also incorporates theoretical and conceptual threads from life course, feminist gerontology, social ecology, and symbolic interactionist perspectives. This article synthesizes theoretical and empirical knowledge and demonstrates the convoy of care model in an increasingly popular long-term care setting, assisted living. We conceptualize care convoys as dynamic, evolving, person- and family-specific, and influenced by a host of multi-level factors. Care convoys have implications for older adults' quality of care and ability to age in place, for job satisfaction and retention among formal caregivers, and for informal caregiver burden. The model moves beyond existing conceptual work to provide a comprehensive, multi-level, multi-factor framework that can be used to inform future research, including research in other care settings, and to spark further theoretical development.

Prediction of burden in family caregivers of patients with dementia: A perspective of optimism based on generalized expectancies of control

The aim of this study was to investigate the predictors of burden for informal caregivers of patients with dementia. Based on a multidimensional approach of the optimism model proposed by Palenzuela, we assessed the moderating role of generalized expectancies of control (GEC) between caregiver stress and burden. A total of 130 patients with dementia and their main family caregivers were assessed from different rural areas of the province of Salamanca (Spain). Patients with dementia underwent a protocol to assess dementia stage, cognitive–functional impairment and behavioural symptoms. Meanwhile, the 20-item Battery of Generalized Expectancies of Control Scales of Palenzuela was completed by the family caregivers. Clinical variables of patients with dementia (progression and behavioural disorders) and GEC (success, self-efficacy, contingency, helplessness and luck) were considered as potential predictors of burden in the hierarchical regression analysis. The Zarit Burden Interview (ZBI) Scale was used as an outcome measure. The results indicated that the clinical variables could not predict burden in caregivers significantly; however, beliefs in personal abilities (self-efficacy) and internal locus of control (contingency) explained up to 32% of the variance in the ZBI scores. Family caregivers with high expectancies of self-efficacy and contingency are less vulnerable to stress. This research supports a base for interventions with informal caregivers and further study.

Unmet Home Care Service Needs of Rural Older Adults With Alzheimer's Disease: A Perspective of Informal Caregivers

This study assessed unmet service needs of rural older adults with Alzheimer's disease (AD) and identified factors that were related to these needs. Data were collected from 109 informal caregivers of AD patients. Over half of the patients experienced unmet service needs in 1 or more areas of activities of daily functioning. Informal caregiver burden and patient's gender and functional status were significantly related to patients' unmet service needs. Patients' use of formal services was marginally related to their unmet service needs. To better address patients' service needs, a comprehensive needs assessment should be conducted with both patients and their caregivers.

Caregiver Burden in Bipolar Hypomania and Mania: A Systematic Review

Bipolar mania is characterized by marked impairment in social, occupational, or other important areas of functioning. One should expect to see an equally severe burden in informal caregivers. The literature was reviewed in order to provide a foundation upon which to build nursing interventions. Several characteristics of bipolar mania-patient aggressiveness, lack of insight, and financial problems-were identified as severe burdens to caregivers. Professionals might not have a total view of the extent of the burden in caregivers. This review could not link the patients' mania or hypomania to factors that were described in other literature on caregiver burden related to bipolar disorder, regardless of the type of episode. There is a need for further research in this area to make more explicit the burden on caregivers during times of mania or hypomania.

New forms of information and communication technology (ICT) and the potential to facilitate social and leisure activity for people living with dementia

This review article is concerned with the potential of technology for improving outcomes for people with dementia by increasing quality of life, extending residence at home and reducing the burden of informal caregivers. Traditionally, research has focused on assistive technologies that can address issues of safety and security as well as providing carer reassurance. Important as these aspects are, little attention has been given to the potential of technology, specifically ICT, in facilitating enjoyable social and leisure activity. It has been identified that the most common unmet need for this population is enjoyable activity to engage with on a daily basis and the potential of ICT in meeting this requirement will be considered. However, context can impact the use of ICT by people with dementia which can be both considerable and multifaceted, ranging from memory decline to lack of confidence and support. These barriers pose a challenge that will be addressed so that in common with the rest of society, people with dementia may experience the benefits of technology and ICT for social and leisure purposes.

P-443 - Social inclusion for the mental health of informal caregivers of Alzheimer disease's patients: The role of reemployment strategies of socially excluded

Alzheimer's disease (AD) is a one of the leading cause of dependency among older adults and of institutionalization in Europe. The number of people with AD is estimated in 10 million people and the cost of the disease has been recently estimated in 100.000 million of euros per year in the European Union (European Brain Council, 2011). There is nowadays no effective treatment of the disease. Currently, care of AD patients is primary sustained by informal caregivers who suffer burden as a result of their care responsibilities, and consequently are mainly affected by mental health problems (depression, anxiety, etc). This burden is also related with a premature institutionalization and violence against AD patients. In this sense, effective solutions are needed in order to fight against the mental health problems of informal caregivers. Regarding this, a social innovation research, funded by the Progress Programme of the DG of Employment, Social Affairs and Inclusion of the European Commission, is being developed currently in France and Spain, where the authors are aimed to demonstrate how a specialized formal training in AD addressed to people in risk of labour and social exclusion could improve the quality of life of AD patients and reduce the informal caregiver burden. The results of this research is specially relevant to help to reduce mental health problems of the informal carers of AD patients, but also in terms of intervene on the cognitive skills of the persons affected, as well as to allow the employment of socially excluded people.