Informal Care Services Research Articles

The Challenging Role of Informal Carers Within the Long-Term Care System in Japan: Focusing on Issues of Japanese Working Carers

Despite the increasing demand for long-term care (LTC) caused by demographic changes and several long-term care insurance (LTCI) program reforms, formal care in Japan is shrinking because of public financial constraints, leading to many problems for informal carers. Because more than half of the informal carers are employed in paying jobs, balancing working and caregiving roles is an important issue in the political agenda. Based on an online survey data of working carers of care recipients eligible for the LTCI program (N=600), this study aims to examine informal carers’ challenging role within the Japanese LTC system, and analyze the work-life balance issues of working carers. The results reveal that most of the respondents are their parents’ carers and more than half co-reside with the care-recipients. With the community promoting comprehensive care, many frail older adults now use a combination of formal and informal care services. Additionally, over three hours of informal caregiving per day, age, marital status, co-residence with the care recipient, self-rated health, and insufficient understanding of the caregiving role in the workplace are significantly related to the psychological well-being of informal carers. Furthermore, most of the aforementioned factors are also associated with turnover intention due to caregiving responsibilities. Informal care is a crucial component of the Japanese LTC system and to alleviate informal working carers’ struggles and decrease unwanted turnover, it is necessary to consider the link between formal and informal care, together with support programs for informal carers.

Changing Trends and the Effectiveness of Informal Care Among Rural Elderly Adults in China

The economic and social transformation of rural areas, coupled with the decline of family-based elderly care and increasing health risks, necessitates in-depth research on the effectiveness of informal care for rural elderly adults. Utilizing 10-year, four-period follow-up data from the Chinese Longitudinal Healthy Longevity Survey (CLHLS) between 2008 and 2018, this study empirically examines the changing trends and heterogeneity of informal care. In addition, this paper identifies factors impacting on the satisfaction of rural informal care services, providing a comprehensive understanding of the effectiveness of these services for different segments of the rural elderly adults. The results indicate that the changing trends of informal care for rural elderly adults follows a differential pattern, with over 60% relying on their children, and 7.79% to 13.27% on their spouses. Only a small fraction of elderly individuals relies on institutional care and market-oriented care, with percentages below 2% and 3%, respectively. While over 95% of rural elderly adults express satisfaction with their informal care services, less than 50% are fully satisfied, and the proportion of dissatisfied elderly adults is increasing annually. Key variables impacting on the effectiveness of informal care services include marital status, health status, living arrangement, care intensity, care expenditures, pension insurance, and daily community care support. Policy options such as financial support for informal care, enhancement of the old-age security system, and the establishment socialized formal care can help alleviate the burden of informal care for rural elderly adults.

“EN-GAWA SERVICE” Concept for Long-Term Care Service Institution, Tainan YMCA

In the face of the changes in the structure of the elderly and low birth rate, the continuous expansion of social security expenses, and the constant update of the burden ratio of long-term care services, new service models are needed in the future to meet the demands of extended life in the community. If the long-term care service institution implements a communication space called "EN-GAWA in Japanese" concept that connects with the community regularly and provides various informal care services to promote cross-generational communication in the community, community residents can have more networks and support.

Study on “EN-GAWA SERVICE” Concept for Long-term Care Service Institution, Tainan YMCA

In the face of the changes in the structure of the elderly and low birth rate, the continuous expansion of social security expenses, and the constant update of the burden ratio of long-term care services, new service models are needed in the future to meet the demands of extended life in the community. If the long-term care service institution implements a communication space called “EN-GAWA in Japanese” concept that connects with the community regularly and provides various informal care services to promote cross-generational communication in the community, community residents can have more networks and support.

Differences in the Use of Formal and Informal Care Services among Older Adults after the Implementation of the Dependency Act in Spain

Using data from the Survey of Health, Ageing and Retirement in Europe (SHARE), the aim of this study is to infer the impact that the Spanish System for Personal Autonomy and Dependency might have on formal and informal care use through the performance of logit random-effects regression models by applying a differences-in-differences approach. Dependency levels were created depending on the limitations on the performance of instrumental and basic activities of daily living. Formal care consisted on home help and nursing home care, whereas informal care referred to the reception of care by relatives or friends, from inside or outside the household. Additional covariates, such as socioeconomic characteristics and health status variables, were included. Our results show that the negative dependency effects on informal care reception are intensified after the implementation of the Dependency Act, as the interaction between being a moderate dependent and wave 4 (year 2010) is significant and positive. In case of formal care, the joint assessment of the implementation of the DA and the different dependency levels did not report a significant effect, although they were significantly associated with formal care use independently. Bearing in mind the demographic ageing, our results highlight the need for the efficient planification of long-term care systems and social support services, especially for informal caregivers, in order to satisfy the care demands and reduce the caregiving burden.

Dependent, Poorer, and More Care-Demanding? An Analysis of the Relationship between Being Dependent, Household Income, and Formal and Informal Care Use in Spain.

Population ageing is one of the current challenges that most societies are facing, with great implications for health systems and social services, including long-term care. This increasing long-term care use is particularly rising for dependent older people, motivating the implementation of regional dependency laws to ensure their care needs’ coverage. Using data from the Survey of Health, Ageing, and Retirement in Europe (SHARE) from the year 2004 until 2017, the aim of this study is to assess the impact that the Spanish System for Personal Autonomy and Dependency might have on (i) household income, according to different needs for care levels, by running Generalized Linear Models (GLMs); and (ii) formal and informal care use depending on the income-related determinant through the performance of logit random-effects regression models. We show that the different degrees of needs for personal care are associated with a lower household income, being associated with an income reduction from €3300 to nearly €3800, depending on the covariates included, per year for the more severely in-need-for-care older adults. Moreover, our findings point towards a higher use of formal and informal care services by the moderate and severe dependents groups, regardless of the household income group and time period. Bearing in mind the demographic ageing, our results highlight the need for the identification of potentially vulnerable populations and the efficient planification of long-term care systems and social support services.

Influence of socio-economic profile of neighbourhoods on the selection of home care strategies for older dependants

AbstractCare strategies for older dependants are determined by not only individuals or network characteristics, but also contextual factors. The objective of this study is to determine whether urban contexts (neighbourhoods) are linked to the use of family care (informal), public services or private care at home (formal). We applied logistic regression analysis to data from the Survey of People in a Situation of Dependence 2018. The sample was composed of 530 older people (55 years old and over) living in two types of socio-economic groups of neighbourhoods in Barcelona, Spain. The type of neighbourhood is relevant in explaining the home care that older dependants receive. In neighbourhoods with a high socio-economic level, dependants are more likely to use private services and less likely to use informal care services and public services, even after controlling for household income, degree of dependency, sex, age and the number of people in the household. Understanding the factors that determine the use of public care services, private care services or family care-giving is important due to the increment in the number of older people in the population. Our results suggest that differences in urban socio-economic contexts determine some inequalities in the use of services even after controlling for socio-economic individual differences. The characteristics of neighbourhoods should be considered to adjust care policies for older dependants.

A novel approach to integrated care using mobile technology within home services. The ADMR pilot study

BackgroundThe care model for supporting elderly people living independently at home relies on the informal and formal assistance of caregivers. Information and communication technology (ICT) offers new approaches for informal care services for this group. MethodsA longitudinal observational pilot study was carried out in home services in France. Employees of the ADMR home services followed 130 elderly people living at home and who were no more than moderately impaired. A single visual analogue scale (VAS) was used on a smartphone to assess global health every time a person was visited. An alert system was devised to inform the elderly person and/or a responsible person of any deterioration in health status. All medical and social events were recorded throughout the 9-month study. Results138 people were enrolled and 106 were evaluated. 37 alerts were observed. 21 were confirmed and 16 were false positives. Only employees untrained in the use of the system generated false positive alerts. Six severe medical alerts were observed, including one cancer undetected by the physician, one hospitalization for diabetes, one hospitalization which led to death 6 months later and one hospitalization which resulted in follow-up care. ConclusionsSocial workers can participate in the health system with all the ethical criteria of medicine. To our knowledge, this is the first ICT-based alert system that has been found to produce severe medical alerts by employees of home services.

The relationship between formal and informal care among Chinese older adults: based on the 2014 CLHLS dataset

BackgroundThe substitute or complementary effect of formal care on informal care service used by the elderly has been tested in Western countries. However, this effect is excluded from the discussion in the Chinese context. The identification of the relationship between informal care and formal care may imply different directions in policy-making. Thus, this study contributes to understanding the relationship between informal care and formal care among Chinese older adults.MethodsUsing the dataset from the Chinese Longitudinal Healthy Longevity Survey (CLHLS) in 2014, this study uses regression models and instrumental variable (IV) method to examine the impact of formal care on informal care.ResultsThe results primarily show that formal care does not substitute informal care among Chinese older adults. In fact, formal care is a supplement to informal care in China.ConclusionIt is expected that informal care will become less available in the future in China. Thus, policymakers should be concerned about the underdevelopment of formal care for the elderly in China.

The Relationship with Previous Use of Community-Based Services and Informal Caregiver Support and Elderly and Informal Caregivers’ Views of Living Arrangement: Analysis of Official Statistics from 2004 to 2014

Background and Objectives: Views on living arrangement from elderly and informal caregivers are crucial to “ageing in place”. They might be related to the experience in the use of elderly care services, which remains inconclusive in previous literature. This study aimed to explore the association of previous experience in formal and informal long-term care services with views of both elderly and their informal caregivers on living arrangement. Research Design and Methods: This study adopted a cross-sectional design. Assessment records of Minimum Data Set-Home Care for community-dwelling elderly who were eligible for subsidized long-term care services in Hong Kong from 2004 to 2014 were made available. Multivariate logistic regression was applied to examine associations between both views on elder’s living arrangement from the elderly, caregivers and their previous informal caregiver support, and experience in formal care services. Results: 82,306 dyads of elderly and informal caregivers were included in the analysis. The elderly with previous use of home and community-based services (OR = 0.84, 95% CI 0.80 - 0.88) and informal caregivers (OR = 0.78, 95% CI 0.76 - 0.81) believed that the elderly should live away from home. Temporal trends of fewer elderly and caregivers supporting the idea of living away from home were also observed. Discussion and Implications: The results highlighted the importance of informal caregiver’s support and previous utilization of formal home and community-based services. It was concluded that resources and information of community-based care have a significant association with views on living at home also proper support services and training of care for the elderly should be made available to informal caregivers to reduce their burden.

Integrated health and social care for people with dementia and their informal caregivers, research results

Background: The Deltaplan for Dementia is a nationwide public-private initiative that aims to tackle and manage the growing problem of dementia by utilising innovative strengths in science, product innovation and healthcare including healthcare policy. The EU Joint Programme – Neurodegenerative Disease Research JPND aims to increase investment between countries in research on the subject of neurodegenerative diseases. Nationally and Internationally, clients, health-care professionals and researchers work together in networks to establish integrated care. MEETINGDEM, aimed to adaptively implement and validate the, inclusive Dutch Meeting Centres Support Programme MCSP for community dwelling people with dementia and their family carers in three EU countries Italy, Poland, UK. MCSP provides people with dementia a social club, and carers information, practical, social and emotional support. It is concluded that MCSP is transferable across countries and has quality of life and mental health benefits for people with dementia and carers against reasonable additional costs. Decidem aimed to improve advance care planning ACP in general practice. A training for GPs is developed in initiating ACP with persons with dementia. A single blind cluster randomized controlled trail was conducted to study its effects. The ACP training leads to a significant increase in ACP conversation and medical and psychosocial topics. These findings also indicate that people with dementia PWD are able to engage in a shared decision making process. Thereby this study contributes to the evidence on capabilities of PWD. Moreover, the ACP conversation contributes to the empowerment of PWD. We advocate implementation of this ACP training. Three projects related to network-based covering formal care and informal care services, and integration of the variety of these services available in dementia care: i- DementiaNet - Evaluation of Sustainability and self-organisation of network-based primary care. DementiaNet is a network-based approach to improve primary care for community-dwelling dementia patients. Initial evaluation has showed merits of this approach, and important insights in factors of successful delivery of network-based care; ii- The “GOUDMantel-project” aims to use the valuable experiences and knowledge of former informal caregivers to better support current informal careers; ii- Dementia-Friendly Society - improving and sustaining positive health of people with dementia and their carers by creating dementia-friendly societies. D. Opportunities and challenges to enhance the social network of home dwelling people with dementia and their family carers. Aims and Objectives: This workshop gives insight in results and ongoing research, including and policy on more integrated care on people with dementia. Format timing, speakers, discussion, group work, etc: Three presentations will be given. One on the network-level and two on the project level. We will discuss the results with the target audience.

Informal care for dementia according to type of service

Dementia is amajor challenge for society and its impact will grow in the future. Informal care is an essential part of dementia care. Previous studies considered informal care as awhole and not by its components. We aimed to assess the degree of association between specific informal care services and dementia. This analysis is based on data from the seventh wave of the AgeCoDe/AgeQualiDe study. Dementia was diagnosed based on the DSM-IV criteria. Severity of dementia was assessed and categorized by means of the Clinical Dementia Rating and eight individual informal care services were considered. Logistic regression models were used to assess associations. Of the 864participants 18% suffered from dementia (very mild: 4%; mild: 6%; moderate: 5%; severe: 3%). All informal care services were significantly associated with dementia, with an emphasis on "supervision", "regulation of financial matters" and "assistance in the intake of medication". Considering different degrees of dementia severity, similar results arose from the analyses. All three aforementioned services showed apronounced association with all degrees of dementia severity, except for supervision and very mild dementia. The provision of all types of informal care services is associated with dementia. The association is pronounced for services that can be more easily integrated into the daily routines of the informal caregiver. Policy makers who plan to integrate informal care into the general care arrangements for dementia should consider this.

Association of informal caregiving with body mass index and frequency of sporting activities: evidence of a population-based study in Germany

BackgroundWhile most studies focused solely on the comparison between informal caregivers and non-caregivers, little is known about the relation between caregiving time or caregiving activities and lifestyle factors. Thus, the aim of this study was to examine whether informal caregiving time and type of caregiving activities are associated with body mass index (BMI) and the frequency of sporting activities among informal caregivers.MethodsCross-sectional data were gathered from the German Ageing Survey, a nationally representative study among community-dwelling individuals aged ≥40 that includes a total of n = 1380 people who provide informal care services. Self-reported BMI and self-reported frequency of sporting activities (daily; several times a week; once a week; 1-3 times a month; less often; never) were used as dependent variables. The average time of providing informal care per week as well as four different caregiving activities (help around the house; looking after someone; performing nursing care services; help in another way) were included as independent variables. Multiple ordinal and linear regressions were used to estimate the association between caregiving factors and the frequency of sporting activities and BMI, respectively.ResultsAmong the 1380 informal caregivers, 65% provided help around the house, 83% looked after people, 28% provided nursing care services, and 68% provided any other help. Bivariate analyses showed that sporting activities and BMI differed by status of providing nursing care services, whereas the other three types of informal caregiving were not associated with BMI nor frequency of sporting activities except for the latter and provision of help around the house. Multiple regressions showed that BMI increased with caregiving time and performing nursing care services, whereas it was not associated with the other three caregiving activities. Likewise, the frequency of sporting activities decreased only with caregiving time and performing nursing care services.ConclusionsThe present study revealed that caregiving time and performing nursing care services are associated with a higher BMI and a decreased frequency of sporting activities. As both, a higher BMI and fewer sporting activities are in turn related to various adverse health outcomes, this knowledge should be taken into account when planning informal caregiving.

Caring time and types of care services provided to help elderly person to keep living at home -Comparison between informal and formal care-

Background: In many countries, including Japan, the number of elderly persons living with multiple chronic health problems increases. To tackle this issue and to allow elderly persons to keep living at home in a healthy, comfortable and safe manner, Japan has implemented a community-based integrated care system in 2006. The goal of this system is to ensure that each community is equipped to provide medical, long-term, and social care at home every time and only when it is necessary. Achieving this goal requires an access to care 24 hours a day, 365 days a year, as well as the delivery of both formal and informal care services. However, Japan is currently in a situation where high expectations towards informal care are difficult to fulfill. Purpose: This research investigates the quantity of various types of medical and long-term care provided to elderly persons that live at home and require care. It also contributes to understand the situation towards informal care, which currently lacks transparency in Japan. The final goal is to provide information that can be used to determine the quantity of formal care service that need to be provided at home. Methods: The quantity of care given by family members was evaluated through a work sampling method. An analysis was also conducted to reveal in which moment of the day this care was delivered and to determine the duration of each episode of care. The analysis took into consideration the type of care, the time frame and the duration of care for every elderly persons requiring care targeted in the survey. The day was divided in 24 one-hour time frames. Moreover, a comparison with the situation in residential care settings was made using data on formal care provided in long-term care facilities. Data: This research draws on two different data sets and analysis streams. The first data set is on family care and was collected through a self-reported questionnaire. It was distributed to 500 households with an elderly person that requires care (referred as “elderly persons with certified International Journal of Integrated Care – Volume 15, 27 May – URN:NBN:NL:UI:10-1-117031 – http://www.ijic.org/ 15th International Conference on Integrated Care, Edinburgh, UK, March 25-27, 2015 2 care needs” in the Long-term Care Insurance System of Japan). The duration of care was selfreported per unit of 10 minutes over a one-week period. The second data set was collected by investigators in two long-term care facilities. The duration of care was reported per unit of 1 minute over a one-day period. Data on the characteristics of the 115 persons admitted and on the 31 staff members was also collected. The content of care was categorized using the codes developed by Tsutsui in 1995 and currently used in research on the care need certification system of Japan. Results: 1. The type of care provided at home and in facilities did not significantly differ. In both settings, the most frequent types of care were “dressing”, “eating support”, “hygiene and grooming”, “toilet support”. Between 30% and 70% of persons also received care affiliated to the codes “communication”, “evaluation and monitoring”, “transfer”, “report and collect of information”, “medication”, “bed making”, and “laundry”. 2. In facilities, care could be categorized in 4 time frames: from 6 to 9, 10 to 17, 18 to 21 and 22 to 5 o’clock. 3. At home, 30% to 40% of families also gave some type of care in the 22 to 5 o’clock time frame. 4. In this time frame, the most frequent type of care in both settings was “toilet support”. 5. When the person suffers from dementia and requires medical care, the care occurrence rate increase in all time frames. Conclusions and discussion: To maintain the quality of care at home and reduce the burden of family caregivers, it seems necessary to deliver home visiting services in the 22 to 5 o’clock time frame. Regarding elderly persons with dementia or with medical care needs, the involvement of primary doctors and the existence of facilities equipped for short-term admissions are also required. Even though the community-based integrated care system was developed to coordinate such services, the role of coordinating all these services in an integrated manner was not clearly assigned to a specific institution. To achieve the goals mentioned above, a care plan that clarifies the type of care and the provider depending on the time frame needs to be implemented. Further research should be conducted to determine the methodology behind the creation of such a care plan.

Mind the Gap: Built Infrastructures, Sustainable Caring Relations, and Resilient Communities in Extreme Weather Events

Climate change debates seldom link the insights derived from the physical sciences to the concerns of social scientists. Understanding how failures in built infrastructures increase the caring burden on women is one of these instances. This article draws on a pilot study on climate change and older people to demonstrate that women who provide informal care services are called upon to fill the gap between declining levels of formal care provisions and care needs when the infrastructures serving a community fail. This research challenges policymakers, emergency planners, and practitioners to think about the increased care burdens that women are expected to undertake during disasters involving extreme weather events like heat waves, cold snaps, and flooding, and reconsider policies that pass this responsibility down to the level of community without the necessary support services and built infrastructures being in place. This issue acquires additional urgency in the context of declining levels of care being publicly funded through the age of austerity as public expenditure cuts begin to bite.

Use of formal and informal care services among older people in Ireland and France

This paper focuses on current use of elderly care services in Ireland and France. In light of health care resource allocation problems, it is important to know the level of current use of home care on which future projections may be based. With the availability of SHARE (Survey of Health Ageing and Retirement in Europe) data, it is now possible to analyse this process and estimate the relationship between formal and informal care, and our econometric model tests for endogeneity of informal care. Previous research has not included Ireland into the analysis. Given that Ireland has a younger population base, lessons could be learned from countries with older populations, such as France. Results suggest informal care is endogenous and negatively linked with formal care in the pooled (France and Ireland) model. There is a higher unmet need for care in Ireland. These results have important policy implications for Ireland as the demographic makeup will change from 11 per cent to 15 per cent of older people over the next 10 years.

Use of health care services and satisfaction with care in people with multiple sclerosis in Stockholm County: A population-based study

Objectives To explore and to describe the use of health, social, and informal care services and satisfaction with care in a population-based sample of people with multiple sclerosis (PwMS) in Stockholm County. Methods The sample consisted of 166 PwMS who participated in the Stockholm MS study. Data on the use of health care services and satisfaction with care and services in PwMS were collected through a computerized register and through home visits to PwMS using structured, face-to-face interviews. Results During the study period of 3 years, 92% had been in contact with out-patient departments of Neurology, and 76% had been in contact with other hospital out-patient departments. Some 83% were in contact with primary care, and primary care contacts constituted 54% of all out-patient care. One third of the PwMS (32%) used home help service (17%) or personal assistants (19%), and higher proportions used informal help from partners (37%). PwMS were in general satisfied with the care received, with the exception of access to coordinated rehabilitation and psychosocial counseling. The proportion of PwMS using inpatient, outpatient, and social/informal (excluding neurological) care increased with the degree of disease severity. Conclusions The great majority of PwMS use hospital specialist care and primary care in parallel, with many departments and services involved. Better accessibility of certain services, for example, psychosocial counseling and rehabilitation, and other improvements, for example efforts to provide coordinated and comprehensive care for PwMS may increase satisfaction with care and should be the focus of scientific evaluation.

A review of the literature on the historical development of community mental health services in the United Kingdom

Community mental health encompasses a diverse range of statutory, voluntary and informal care services. However, little has been written about how changes in policy, legislation and philosophies throughout time impact on the service user experience of mental health care today. The purpose of this paper was to review the literature using systematic approaches and address the question: 'How have historical factors influenced the development of community mental health care in the United Kingdom?' Following a comprehensive literature search, we included 70 texts. Owing to the difficulties of classifying historical texts numerically, two themes were identified: (1) changing perspectives towards mental illness and the mentally ill; and (2) the complexities of mental health care provision. We structured the review around these themes. A narrative approach was used to illustrate the diversity within the identified texts. In response to the review question, an exploration of the historical literature demonstrates that some form of community care has always been evident. It also suggests that over time different philosophical ideas have influenced mental health policy and service structure. These have in turn shaped the care a service user receives when they come into contact with mental health professionals.

Psychiatric morbidity, service use, and need for care in the general population: results of The Netherlands Mental Health Survey and Incidence Study.

This study examined the use of primary health care, mental health care, and informal care services, as well as unmet care needs, by individuals with different psychiatric diagnoses. Data were derived from the Netherlands Mental Health Survey and Incidence Study and were based on a representative sample (n = 7147) of the general population (aged 18-64 years). In a 12-month period, 33.9% of those with a psychiatric disorder used some form of care; 27.2% used primary care, and 15.3% used mental health care. Patients with mood disorders were the most likely to enlist professional care; those with alcohol- and drug-related disorders were the least likely to do so. Higher educated persons who live alone, single parents, unemployed persons, and disabled persons were more likely to use mental health care. Unmet need for professional help was reported by 16.8% (men 9.9%, women 23.9%) of those with a disorder. Care use varies widely by diagnostic category. The role of general medical practitioners in treating persons with psychiatric disorders is more limited than was anticipated. Patients in categories associated with extensive use of professional care are more likely to have unmet care needs.