Community care for stroke patients in the last year of life: results of a national retrospective survey of surviving family, friends and officials

The quality of community care received in the last year of life by stroke patients and their informal carers is described. This is secondary analysis of data from the Regional Study of Care for the Dying, in which information was collected on a randomly selected sample of people who died in 1990, in 20 self-selected English health districts that were nationally representative in terms of socio-demographic characteristics and health care provision. The respondents comprised 20 spouses, 48 relatives, three friends or neighbours and 40 officials who had known about the last year of life of 111 people who died of stroke, and had spent some time at home (or in a residential or nursing home) in the last year of life. Two-fifths of those who died were reported to have needed more help with personal care (43%), a quarter to have needed more help with domestic chores (27%), and a third to have needed more financial help (31%). Three-fifths had spent some of their last year in a nursing or residential home (63%). Three quarters of respondents who had borne the brunt of caring reported that caring had restricted their own activities to a fair or severe extent (76%); only a third had found it a rewarding experience (32%). Spouses, and those caring for depressed or anxious stroke patients found caring particularly stressful. Stroke patients living in the community need more help with domestic chores and, in particular, with personal care. Informal carers require better support, especially spouses and for those caring for depressed or anxious stroke patients. Further research is required to identify and evaluate the most effective ways of meeting the needs of these patients and their families, and to explore the effects on their care of the Community Care legislation.     

Differential impacts of care‐giving across three caregiver groups in Canada: end‐of‐life care,long‐term care and short‐term care

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care‐giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end‐of‐life (EOL) care (n = 471); (ii) those providing long‐term care (more than 2 years) for someone with a chronic condition or long‐term illness (n = 2722); and (iii) those providing short‐term care (less than 2 years) for someone with a chronic condition or long‐term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care‐giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of ‘fair or poor’ self‐assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care‐giving, more so than both short‐term and long‐term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care‐giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long‐term or short‐term caregivers. This provides the evidence for the assertion that EOL care‐giving is the most intense type of care‐giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short‐term and long‐term caregivers.     

‘A fifty mile round trip to change a lightbulb’: An exploratory study of carers’ experiences of providing help,care and support to families and friends from a distance

While the role of carers has been widely investigated, the experiences of those who care from a distance have been little explored, especially in the United Kingdom. However, contemporary patterns of family life suggest that this may be a significant experience for many. This exploratory study employed an anonymous online survey, conducted April–November 2017, to collect data about specific issues (experiences, challenges and satisfactions) faced by carers living at a distance requiring at least 1 hr travel time (each way) from the person they support. One hundred and twenty‐eight participant responses were analysed. Qualitative (thematic) analysis identified that ‘distance carers’ carry out multiple care tasks, both when with, and apart from, the person they care for. Distance creates specific challenges for carers who have to work to ‘bridge the distance gap’ and who cannot ‘just drop in’ and see the person they support. Distance further exposes carers to emotional, financial and temporal demands. The use of technologies or the availability of a wider support network may support distance carers, and some explore the viability of relocation. However, these potential support strategies were identified as ‘fragile’ and at risk of breaking down. Despite the challenges identified, distance carers also reported satisfactions derived from supporting their relative/friend. While the numbers of those providing distance care are unknown, this research suggests that this is a significant carer group, whose needs should be recognised in health and social care policy, practice and research.     

The last 3 months of life: care, transitions and the place of death of older people

Many older people die in hospitals, whereas research indicates that they would prefer to die at home. Little is known about the factors associated with place of death. The aim of the present study was to investigate the care received by older people in the last 3 months of their life, the transitions in care and the predictors of place of death. In this population-based study, interviews were held with 270 proxy respondents to obtain data on 342 deceased participants (79% response rate) in the Longitudinal Aging Study Amsterdam. In the last 3 months of life, the utilisation of formal care increased. Half of the community-dwelling older people and their families were confronted with transitions to institutional care, in most cases to hospitals. Women relied less often on informal care only, and were more dependent than men on institutional care. For people who only received informal care, the odds of dying in a hospital were 3.68 times the odds for those who received a combination of formal and informal home care. The chance of dying in a hospital was also related to the geographical region. The authors argue that future research is needed into the association that they found in the present study, i.e. that decedents who received both formal and informal care were more likely to die at home. In view of the differences found in geographical region in relation to place of death, further investigation of regional differences in the availability and accessibility of care is indicated.     

Perspectives of elderly people receiving home help on health, care and quality of life

From a nursing perspective it is important to have information about the type of care needed, the reasons care is needed and quality of life among the most elderly people living in their own homes, in order to support their independence and maximise their quality of life. Thus a study was performed to investigate people aged 75 years and older dependent on care from professionals and/or a next of kin, their functional health, diseases, and complaints in relation to quality of life as perceived by themselves. The sample (n = 448) comprised those who, in an age-stratified randomised sample of adults living in their own homes, responded that they were dependent on help from others. The questionnaire covered sex, age, living conditions, civil status and number of children and cohabitation, respondents' health, diseases, quality of life, help from another person, and the type and amount of help received. The number of elderly persons dependent on help ranged from 18.5 to 79.1% in the different age groups. The help came mainly from informal carers (84.1%), and, in 53.1% of cases, from the home help service and home nursing care. Help from formal caregivers was given in combination with that from a next of kin in 38.8% of the cases. More next of kin than formal carers helped in all Instrumental Activities of Daily Living (IADL) and Personal Activities of Daily Living (PADL) tasks, with the exception of cleaning the house and providing a bath/shower. Although the respondents received help themselves, they also helped another person in 6.5% of cases. The elderly reported a median of three diseases and ten different complaints of which pain and impaired mobility were the most frequent. Between 20 and 40% of the respondents in the different age groups reported restricted ability to be alone and one third of them reported low or very low quality of life. Multiple linear regression analysis showed the number of complaints, restricted ability to be alone, living alone and age to have a significant relationship on low quality of life.     

Unmet long‐term care needs and depression: The double disadvantage of community‐dwelling older people in rural China

This study investigates the relationship between unmet long‐term care needs and depressive symptoms among community‐dwelling older people in China. The data come from a nationally representative sample of 1,324 disabled older people from the China Health and Retirement Longitudinal Survey (CHARLS) collected between 2013 and 2014. Regression analyses were conducted to examine the factors associated with unmet needs and the impacts of unmet needs on people’s depressive symptoms. We found that disabled older people living in rural communities have a higher level of unmet needs than those in urban communities. Unmet needs cause more severe depressive symptoms among rural older people, but they do not have a significant impact among urban older people. Depressive symptoms are also affected by people’s health conditions in rural China and by household income in urban China. We argue that older people living in rural communities face a double disadvantage. The first disadvantage relating to unmet needs reinforces the second one relating to mental health. These findings highlight the urgent need for more investment by the Chinese central government in formal social care services and support for carers in rural areas.     

Formal and informal care for community‐dwelling frail elderly people over time: A comparison of integrated and usual care in the Netherlands

While integration has become a central tenet of community‐based care for frail elderly people, little is known about its impact on formal and informal care and their dynamics over time. The aim of this study was therefore to examine how an integrated care intervention for community‐dwelling frail elderly people affects the amount and type of formal and informal care over 12 months as compared to usual care. A quasi‐experimental design with a control group was used. Data regarding formal and informal care were collected from frail elderly patients (n = 207) and informal caregivers (n = 74) with pre/post‐questionnaires. Within‐ and between‐group comparisons and multiple linear regression analyses were performed. The results showed marginal changes over time in the amount of formal and informal care in both integrated care and usual care. However, different associations between changes in formal and informal care were found in integrated and usual care. Most notably, informal caregivers provided more instrumental assistance over time if formal caregivers provided less personal care (and vice versa) in integrated care but not in usual care. These results suggest that integrated care does not necessarily change the contribution of formal or informal care, but changes the interaction between formal (personal care) and informal (instrumental) activities. Implications and recommendations for research and practice are discussed. Trial registration: Current Controlled Trials ISRNT05748494.     

Policy and practice: fundamental contradictions in the conceptualization of community care for elderly people?

For more than two decades, community care has been proclaimed the answer to the 'social problem’ of the ageing of the population. Since the publication of the Community Care White Paper (Department of Health 1989), a plethora of discussion and guidance documents have followed. In this paper, critical examination is made of some of the assumptions that appear to underpin policy and debate about community care. It is argued that recent policy and community care reforms may be affected adversely by inherent conceptual contradictions and conflicting understandings and expectations about community care. It is suggested that the reassuring connotations of the phrase ‘community care’ may not be reflected in its reality and that the debate needs to be extended to acknowledge and address some of the underlying dynamics, contradictions and interactions that may have a bearing on the success of the reforms.     

The physical functioning and mental health of informal carers: evidence of care‐giving impacts from an Australian population‐based cohort

Informal carers represent a substantial proportion of the population in many countries and health is an important factor in their capacity to continue care‐giving. This study investigated the impact of care‐giving on the mental and physical health of informal carers, taking account of contextual factors, including family and work. We examined health changes from before care‐giving commenced to 2 and 4 years after, using longitudinal data from the Household Income and Labour Dynamics in Australia survey. The sample comprised 424 carers and 424 propensity score‐matched non‐carers. Health was self‐assessed, measured with the SF‐36 Health Survey Mental Health (MH) and Physical Functioning (PF) scales. Care‐giving was classified as non‐carer, low (<5 hours/week), moderate (5–19 hours/week) and high (20 or more hours/week). PF and MH change scores were regressed on baseline scores, care‐giving, covariates (including work, family and socio‐demographic characteristics) and interactions to identify impacts for subgroups. The physical and mental health impacts differed by gender, and care‐giving hours and carer work hours were important contextual factors. Deterioration in both PF and MH was worse for females after 2 years and deterioration in MH was worse for males after 4 years. Among carers aged 40–64 years, there was a 17‐point decline in PF (P = 0.009) and a 14‐point decline in MH (P < 0.0001) after 2 years for female high caregivers working full‐time and 9.3 point improvement (P = 0.02) for non‐working male high caregivers. Change was not significant for non‐carers. The study found that not all carers suffer adverse health impacts; however, the combination of high levels of care‐giving with workforce participation can increase the risk of negative physical and mental health effects (particularly in female carers). Working carers providing high levels of care represent a vulnerable subgroup where supportive and preventive services might be focused.     

Actions to influence the care network of home‐dwelling elderly people: A qualitative study

Positive impact of care networks of home‐dwelling elderly people may be based on several network mechanisms: navigation to resources, negotiation between participants and contagion of behaviours. Little is known about actions of participants—elderly people, informal caregivers or formal care providers—to activate such mechanisms and generate support. Aim of this study was to identify actions in relation to these network mechanisms. A cross‐sectional qualitative study of 48 interviews with home‐dwelling elderly people, informal caregivers and formal care providers in the eastern parts of the Netherlands was conducted between March and September 2016. A framework analysis on network mechanisms categorised actions. Actions were reviewed by network party and compared between networks to explore relations between actions and networks. Results showed that participants navigated through existing relations to seek support. Actions on negotiation were aimed at ameliorating existing relations. Few examples and no actions on contagion of behaviours were found. Actions seemed driven by incidents and existing relations. Elderly people rarely initiated actions, informal caregivers felt hampered by their position in the network. Consistent patterns of relations between actions and network characteristics did not emerge. We concluded that the full potential of network‐based support of elderly people is probably underused. Particularly promising seem: navigating the neighbourhood for new informal care, using opposite opinions as a catalyst for change and bringing quality of life and dilemma's into dialogue in the network.     

Well-being losses by providing informal care to elderly people: Evidence from 310 caregivers in Shanghai,China

A series of policies aimed toward rational resource allocation of long-term care have being actively discussed since the launch of the social long-term care insurance in Shanghai, and it is important to take a societal perspective for informed decision-making. This study aims to explore factors that are associated with well-being of informal caregivers in Shanghai, and to provide empirical evidence of application of an established well-being valuation method to monetise informal caregivers' well-being losses in a developing country. 310 informal caregivers of applicants for social long-term care insurance in Shanghai were interviewed. Univariate and multivariate analyses were conducted to explore the associated factors with life satisfaction of the caregivers. The monetary values of an additional hour of caregiving with and without specification of care tasks were estimated by the well-being valuation method. Life satisfaction was consistently associated with monthly income, health status, and caring hours of the caregivers. The money needed to compensate one additional hour of caring per week was 12.58 CNY (0.3% of the monthly income), and 96.95 CNY (2.0% of the monthly income) for activities of daily living (ADL) tasks. Income, health status, and caregiving are significantly associated with well-being of informal caregivers. Caregivers in relatively poor health condition and/or involved in more ADL tasks should be particularly considered in supporting policies in Shanghai.     

Measuring satisfaction with social care amongst older service users: issues from the literature

Issues of quality and accountability in social care for older people are of increasing importance. A key factor in determining quality is the extent to which older people themselves are satisfied with both the assessment of their needs and the services provided. The 1997 White Paper, Modernising Social Services, stated that local authorities will need to establish authority-wide objectives and performance measures to improve the quality and efficiency of services. In measuring quality, the White Paper stipulated that social service departments would need to design and administer satisfaction surveys as one means of capturing user and carer perceptions and experiences of services. This paper attempts to highlight some of the main issues to be considered when designing and conducting such surveys with older users of community care services. Through a review of the British and North American literature on older people's satisfaction with services, current approaches to measuring satisfaction are outlined and the relationship between the characteristics and circumstances of older people and their responses to satisfaction questions is examined. The paper concludes by offering some solutions to overcoming current problems by drawing conclusions about quality from survey findings, so that older people's opinions about the services they receive can begin to be assessed in a more meaningful way.     

The nutritional care of people living with dementia at home: A scoping review

There are an increasing number of people with dementia living in their own home for longer, often supported by a family member. The symptoms of dementia can affect an individual's nutritional status, which can lead to a reduced quality of life for the person with dementia and their family members. A scoping review was conducted from July 2016 until September 2016, using a recognised framework, to explore what is currently known, and identify any gaps in the research regarding the nutritional care of people living with dementia at home. This included any interventions that may have been trialled or implemented, and the views of those living with dementia, carers and clinicians. Six electronic databases were searched from inception to July 2016. A review team was involved in screening and data extraction for selected articles. Published qualitative and quantitative studies were included that explored the nutritional care of people living with dementia at home. Methods included data extraction and conventional content analysis. Stakeholders were involved in the development of final categories. Following screening, 61 studies reported in 63 articles were included. Most studies were cross‐sectional (n = 24), cohort (n = 15) or qualitative (n = 9). Only three were randomised controlled trials. Three overarching categories represented the results: Timely identification of nutritional risk and subsequent regular monitoring of nutritional status, multi‐component tailored interventions and the influence of the care‐giving dyad on nutritional status. Many studies identify people living at home with dementia as a vulnerable group prone to malnutrition; however, a lack of interventions exists to address the increased risk. There is a lack of research exploring the role of home care providers and healthcare professionals in the provision of nutritional care. Further research is required to explore how the emotional aspect of the care‐giving dyad influences nutritional care.     

Impacts of care‐giving and sources of support: a comparison of end‐of‐life and non‐end‐of‐life caregivers in Canada

This is the second in a series of papers that deal with care‐giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short‐term, long‐term and end‐of‐life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non‐EOL caregivers (short‐term and long‐term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long‐term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care‐giving experience and the caregiver supports received, while also examining the differences in these across EOL and non‐EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non‐EOL caregivers. The study revealed that with respect to socio‐demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non‐EOL caregivers are experiencing negative impacts from their care‐giving role, comparatively greater supports are needed for EOL caregivers.     

Interagency collaborative care for young people with complex needs: Front‐line staff perspectives

Worldwide, a growing burden of health and social issues now affect young people. Interagency collaboration and the “integration” of health and social care services are advocated to address the increasingly complex needs of at‐risk youth and to reduce barriers to accessing care. In New Zealand, Youth‐One‐Stop‐Shops (YOSSs) provide integrated health and social care to young people with complex needs. Little is known about how YOSSs facilitate collaborative care. This study explored the collaboration between YOSSs and external agencies between 2015 and 2017 using a multiple case study method. This paper reports qualitative focus group and individual interview data from two of four case sites including six YOSS staff and 14 external agency staff. Results showed participants regarded collaboration as critical to the successful care of high needs young people and were positive about working together. They believed YOSSs provided effective wraparound collaborative care and actively facilitated communication between diverse agencies on behalf of young people. The main challenges participants faced when working together related to the different “world views” and cultures of agencies which can run contrary to collaborative practice. Despite this, some highly collaborative relationships were apparent and staff in the different agencies perceived YOSSs had a lead role in co‐ordinating collaborative care and were genuinely valued and trusted. However without the YOSS involvement, collaboration between agencies in relation to young people was less frequent and rarely went beyond limited information exchange. Establishing and maintaining trusting interpersonal relationships with individual staff was key to successfully negotiating agency differences. The study confirms that collaboration when caring for young people with high needs is complex and challenging, yet agencies from diverse sectors value collaboration and see the YOSS integrated wraparound approach as an important model of care.     

Working towards integrated community care for older people: Empowering organisational features from a professional perspective

Although multi-disciplinary cooperation between professionals is a prerequisite to provide integrated care in the community, this seems hard to realise in practice. Yet, little is known about the experiences of professionals who implement it nor about the organisational features professionals identify as empowering during this cooperation process. Therefore, a case study of a multi-disciplinary geriatric team was performed. The data-collection included observations of meetings, in-depth interviews and focus groups with professionals (N = 12). Data were analysed inductively and related to the three organisational levels within the model of organisational empowerment of Peterson and Zimmerman. Signs of empowering organisational features on the intraorganisational level were mutual trust and clear working routines. On the interorganisational level important features included improved linkages between participating organisations and increased insight into each other's tasks. Tensions occurred relating to the inter- and the extraorganisational level. Professionals felt that the commitment of the management of involved organisations should be improved just as the capacity of the team to influence (local) policy. It is recommended that policymakers should not determine the nature of professional cooperation in advance, but to leave that to the local context as well as to the judgement of involved professionals.     

Impediments to community‐based care for people ageing with intellectual disability in rural New South Wales

The emerging phenomenon of ageing with an intellectual disability has become subject to an increasing research focus in recent years. However, there remains little knowledge regarding the specific impediments that community workers face in supporting this cohort. The aims of the current study were to identify the major factors that, direct care staff believe, have most impact upon individuals ageing with an intellectual disability in the community. A three‐round Delphi project was conducted across rural areas of New South Wales in Australia with 31 disability support workers to gain their perspectives on the main impediments facing a person ageing with intellectual disability. The 2010 study identified that the issue of ageing with an intellectual disability was presenting significant problems for community‐based service delivery to this group of people. The panel identified 25 different impediments to the provision of support. A thematic analysis of the items indicated three main themes of ‘funding’, ‘training’ and ‘access to services’. By identifying these impediments to supporting people ageing with an intellectual disability in the community, both services and government funding bodies have the ability to plan to overcome both current and future problem areas. This identification of impediments may facilitate individuals to receive more appropriate assistance, which in turn may lead to an improved quality of life and maintenance of a community‐based placement rather than premature admission to the congregate‐care system. This study is particularly timely, given that Australia is in the midst of implementing a National Disability Insurance Scheme, and is an opportunity for all levels of government to agree on the mechanisms to appropriately assist individuals with an intellectual disability to continue to be supported in the community as they age.