Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries

ObjectivesTo explore reasons for institutionalization of people with dementia according to informal caregivers as well as variation in reasons between countries.DesignAn explorative cross-sectional study was conducted in 8 European countries.SettingPer country, a minimum of 3 long term care facilities, offering care and accommodation as a package, participated in this study. Participating countries were selected to represent different geographic areas in Europe.ParticipantsOf the 791 informal caregivers involved in the RightTimePlaceCare project of people with dementia who were recently admitted to a long term care facility, 786 were included for this study.MeasurementsAs part of a semistructured interview, informal caregivers were asked the main reason for institutionalization in an open-ended question. Answers were categorized according to a conventional coding approach. All reasons were then quantified and tested.ResultsMainly patient-related reasons were stated, such as neuropsychiatric symptoms (25%), care dependency (24%), and cognition (19%). Neuropsychiatric symptoms were among the most often mentioned reasons in most countries. Besides patient-related reasons, caregiver burden and the inability of the informal caregiver to care for the patient were stated as reasons (both 15%). Further analyses showed countries differ significantly in reasons according to informal caregivers. Additionally, reasons were analyzed for spouses and child-caregivers, showing that spouses more often stated reasons related to themselves compared with child-caregivers.ConclusionMultiple reasons contribute to the institutionalization for people with dementia, with several factors that may influence why there were country differences. Variation in the organization of dementia care and cultural aspects, or the relationship between the informal caregiver and person with dementia may be factors influencing the reasons. Because of a wide variation in reasons between countries, no one-size-fits-all approach can be offered to guide informal caregivers when facing the possibility of institutionalization of the person with dementia.     

Fit to care? A comparison of informal caregivers of first‐generation Black Caribbeans and White dependants with advanced progressive disease in the UK

The present survey aimed to describe and compare the main needs and problems experienced by informal caregivers of Black Caribbean and White native-born patients in their last year of life. Out of the 106 Black Caribbean and 110 White patients identified as dying during the survey period, 50 interviews per ethnic group were conducted, a response rate of 47% and 45%. Out of these, 31 respondents representing Black Caribbean and 28 representing White dependants said that they bore the brunt of caregiving. Compared with those who cared for White dependants, those who cared for Black Caribbean dependants were more likely to be women (84% versus 46%, chi2 = 9.21, 1 d.f., asymptotic P = 0.002) and younger than 55 years of age (73% versus 37%, chi2 = 7.60, 1 d.f., asymptotic P = 0.006). The personal-care tasks which caregivers assisted their dependants with were similar, as were the informal resources they drew on. Many caregivers reported restrictions in their daily lives; this was more pronounced for those who cared for Black Caribbean dependants (chi2 = 6.40, 2 d.f., asymptotic P = 0.041, exact P = 0.039). Research is required to provide a qualitative narrative of the meaning caregivers from different communities ascribe to caring, and the formal and informal resources which they need to support them.     

Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in Thailand

In Thailand, the crude death rate from stroke is 10.9/100 000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse‐led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver’s strain and quality of life. This was a non‐randomised comparative study with concurrent controls, using a two‐group pre‐test and post‐test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ‐28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P < 0.001) and they also reported less strain (Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P < 0.001; and at 3 months t = 7.67, d.f. = 135, P < 0.001). This research demonstrated that providing education and support to the family caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life.     

Projecting social support needs of informal caregivers in Malaysia

This article presents the findings of a self‐report study of the consequences of being an informal caregiver in Malaysia. The aim of this exploratory study was to examine Malaysian efforts in assisting informal caregivers, based on an analysis of the issues and concerns raised by the caregivers themselves. Data were obtained from a cross‐sectional survey of informal caregivers in 2009. This sample comprised parents, spouses and/or adult siblings, and adult children, caring for their children, spouses or siblings and parents who were chronically ill and/or had a disability. Of 300 prospective participants, only 175 could be located (58%), but all those contacted agreed to participate. Respondents were randomly selected and interviewed using a structured questionnaire to identify the emotional, financial, social and physical issues consequent upon being a caregiver. Most respondents reported that their care‐giving responsibilities had impacted their emotional, financial, social and/or physical well‐being. Inadequate and/or uncertain income was by far the greatest concern followed in descending order by social, physical and emotional consequences. The one‐way analysis of variance showed significant differences among the three categories of caregivers with respect to physical and emotional consequences. The findings show that care‐giving has detrimental effects on the lives of informal caregivers, and that they are in significant need of social support to help them deal with care‐giving tasks and responsibilities. Based on the findings, an integrated social support programme is proposed, tailored to the needs of informal caregivers.     

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.     

Openness and Specialisation: Dealing with Patients in a Hospital Emergency Service

The hospital is characterised by a dual orientation: being open to the heterogenous demands for medical care that are spontaneously directed to it, and selecting patients in terms of their match with medical specialties represented in its different services. This tension is at the heart of the functioning of emergency services. Based on ethnographic fieldwork in a French teaching hospital, the article examines the consequences of this duality on the concrete organisation of work. It shows the main dimensions that go to make up the patient's mobilising worth : closeness to the core of real emergencies; social demands; the intellectual interest of the case; questions raised by transfers of responsibility between doctors. For each dimension, it studies staff reactions and gives some indications about their complexity. Finally it suggests some comparisons between these results and the observations made by several studies conducted in American and UK hospitals since the 1970s.     

Informal Caregivers’ Use of the Internet for Caregiving Information

Using data extracted from the Caregiving in the U.S. 2009 survey, this study describes caregivers’ use of the Internet for caregiving information and identifies factors related to their use. This study includes 800 informal caregivers for community-residing older adults age 65 and over. In the study, more than one-half of caregivers searched online caregiving information. The results from an ordered logistic regression analysis showed that caregivers’ use of the Internet was significantly related to caregivers’ age, education, income, primary caregiver status, caregiving strain, self-reported health, and information/service needs. Implications of these findings are discussed.     

Combining paid work with eldercare: the implications for social policy

Government policy relies upon the continued provision of unpaid care from informal carers to groups such as elderly people. The majority of carers of elderly people are in employment and the number of people who combine care and work is likely to rise as the proportion of women and older workers in the labour force increases. However, recent public policy statements make little mention of the impact of informal care on employment and the difficulties associated with combining care and work. Likewise this issue has been ignored in the policy debate about the promotion of equal opportunities in employment, and in discussion of social policies for older workers, who among workers below pension age are the main providers of care for elderly people. This paper reviews the evidence concerning the relationship between employment and care of the elderly. It suggests an agenda of policy issues that need to be addressed, taking account of the fact that carers of elderly people are not a homogeneous group. A range of policy measures are discussed which would enable more carers to remain in employment, and allow other carers to return to the labour market, and hence reduce some of the financial and other costs associated with loss of employment.     

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.     

More than chores: The invisible health work of family caregivers in rural New Brunswick,Canada

Most home care for people living with chronic illness or disability is provided by informal, or unpaid, family members. Family caregivers in rural New Brunswick engage in essential work to maintain the home as a site of care. Renovations, property maintenance, and the administrative work involved in accessing medical equipment and managing staff are examples of the types of invisible labour involved in interacting with a complex care environment. Conversations with 13 family caregivers across a small rural Canadian province suggest that even when resources are ‘available’, place-based factors involved in caring at home in a rural setting make it difficult for carers to use these resources and accessing them becomes another form of work itself. Similar to Wiles et al.’s (2018) findings in their study of end-of-life family care in Aotearoa, New Zealand, carers in rural New Brunswick spoke of their activities as part of an ongoing process of interaction with the care recipient and care environment. Carers with fewer financial and material resources experienced higher burdens of invisible work. The paper sheds light on the types of labour involved in ‘knowing, doing, and negotiating’ care at home and re-categorizes these activities as ‘health work’ as a means of informing home care policy. The paper finds that family caregivers are aware of their invisible work, characterize it as essential health work, and seek recognition for their complex contribution to the formal health system.     

The Effects of Severe Acute Respiratory Syndrome Coronavirus 2 on the Reported Mental Health Symptoms of Nonprofessional Carers: An Analysis Across Europe

ObjectivesThis study tries to analyze how the crisis generated by severe acute respiratory syndrome coronavirus 2 has affected the reported mental health symptoms of informal caregivers in different European countries.MethodsThe Survey of Health, Ageing and Retirement in Europe-COVID-19 was used, collecting information from the beginning of June 2020 to August 2020 about individuals’ state of health and the care they received. Several probit regression models were used to analyze the differences in the probability of (1) being sad or depressed, (2) being anxious or nervous, (3) having difficulty sleeping, and (4) feeling lonely, between individuals who provided informal care and individuals who did not. Several subanalyses by geographic area, mortality rates due to coronavirus disease 2019 (COVID-19), and long-term care expenditure were also performed.ResultsSince the outbreak of COVID-19, informal caregivers have had a higher probability of being sad or depressed of 8 percentage points (p.p.), a 7.1 p.p. higher probability of being anxious or nervous, and a 5.9 p.p. higher probability of having difficulty sleeping than non-caregivers. Informal caregivers in Southern Europe have had an 8 p.p. higher probability of being sad or depressed than non-caregivers. In Eastern Europe, this difference in probability reaches 9.7 p.p. Finally, in countries with higher mortality rates due to COVID-19, there have been greater differences in terms of being sad or depressed between caregivers and non-caregivers, regardless of expenditure on long-term care.ConclusionsSince the outbreak of COVID-19, informal caregivers in Europe have had a higher probability of reporting mental health symptoms than non-caregivers.