Community Ment Health J DOI 10.1007/s10597-014-9696-9
BRIEF REPORT
Informal Home Care for Elderly in Belgium: A Study on the Features and Challenges of Informal Care at Local Level Bart Criel • Veerle Vanlerberghe • Benedicte De Koker Bieke Decraene • Elke Engels • Riet Waltens
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Received: 6 September 2012 / Accepted: 13 January 2014 Ó Springer Science+Business Media New York 2014
Abstract In Belgium, and in other OECD countries, there is a growing awareness about the importance of informal home care for the elderly’s well-being. Informal care is considered as an intrinsically valuable social phenomenon. Public authorities in Belgium have been advocating an active policy of support for informal carers. In 2007, an extensive survey was carried out in the Belgian municipality of Kruibeke in order to establish a better picture of the various needs of the elderly in their home situation, but also to better understand the way in which informal care is provided and perceived by care receivers and care givers. The study points to the need for support for the difficult burden of informal care and highlights the need for a coordinated and integrated approach to elderly care. Keywords Elderly Well-being Informal care Home care Belgium
Bart Criel was chairman of the Public Centre of Social Welfare in Kruibeke from April 2001 to July 2008. B. Criel (&) V. Vanlerberghe Department of Public Health, Institute of Tropical Medicine, Nationalestraat 155, 2000 Antwerp, Belgium e-mail: [email protected] B. Criel B. Decraene E. Engels R. Waltens Public Centre of Social Welfare (PCSW) Kruibeke, Kruibekestraat 12, 9150 Kruibeke, Belgium B. De Koker Department of Sociology, University of Antwerp, Sint-Jacobstraat 2, 2000 Antwerp, Belgium
Introduction Informal care is fairly widespread in Belgium and other European countries (Burau et al. 2007; Pickard 2011). According to the 2001 Socio-Economic Survey (the former population ‘‘census’’), 9 % of Belgians living in the Flemish region aged 15? cares at least once a week for one or more individuals with a long-term illness, disorder or disability, outside the context of their normal occupation (Farfan-Portet et al. 2010). The Flemish Centre for Population and Family Studies defines 19 % of 25- to 64-yearolds as (intensive) informal caregivers (Jacobs et al. 2005). The Panel Study of Belgian Households (PSBH) identified 6 % of Belgians aged 16 and older as informal caregivers (Declercq and Van Audenhove 2004). The figure varies according to the criteria used and the questions asked. There is as yet no clear method for measuring informal care (Jacobs et al. 2005; Masuy 2011). Studies from the perspective of care recipients acknowledge the great contribution made by informal carers. For the elderly, informal care prevails over professional care for most care tasks (Geerts 2009; Vanderleyden and Vanden Boer 2004). Although the contribution made by informal caregivers declined slightly in the last decades, it is still and by far the biggest source of help for the elderly (De Koker et al. 2007). Studies from other countries than Belgium confirm these findings: according to Tester (Tester 1996) informal care accounts for 75–80 % of all care in the US and in a number of European countries. In an environment of fragmented and poorly coordinated care systems, like is the case in Belgium, the informal caregiver is often the best person to monitor the progression of the patient’s problems (Levine et al. 2010; Chartreau et al. 2006). Today, governments and researchers show a keen interest in informal care for the elderly and
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intergenerational relationships. There is a growing awareness that professional care is unable to cope with the ever increasing need for care in Belgian society. This interest in informal care, and by extension in home care contains contradictions (Exley and Allen 2007): there is the danger of an over-romanticized notion of informal care on the one hand and the need to guard against it becoming a sort of (politically correct) makeshift to cope with the (large) deficits and (high) costs in the professional and/or residential care for the elderly on the other hand. The political choice in favour of home care imposes a greater burden on individual citizens, more specifically on the informal caregiver. Research shows that informal carers suffer poorer mental health compared to people who do not give care or the general population. These caregivers show increased symptoms of depression, anxiety disorders and psychological stress than their non-caregiving peers or the general population (Marks et al. 2002; Hirst 2003; Pinquart and So¨rensen 2007; Schoenmakers et al. 2004). Although the results about their physical health are less unambiguous (Taylor et al. 1995; Hirst 2004), several studies found that informal care is associated with poorer subjective health, greater physical health problems, a lower immunity and even a higher risk of mortality (Schulz and Beach 1999; Vitaliano et al. 2003; Barrow and Harrison 2005; FarfanPortet et al. 2010). Informal caregivers are therefore often described as ‘hidden patients’ (Fengler and Goodrich 1979). There is also a social and financial impact. Intensive caregiving can lead to a loss of social contacts and a higher risk of social isolation (Fast et al. 1999). It can also lead to worsening household finances because of the cost of care and the loss of income (Fast et al. 1999; Heitmueller and Inglis 2007). On the other hand, the care commitment has a number of positive outcomes: 52 % of Flemish informal caregivers indicated that it gives meaning to their life, while 56 % find it an enriching experience (Vanbrabant and Craeynest 2004). One in ten carers in the study of de Boer et al. (2009) even indicated that he/she became happier in the process. This does however not take away the fact that highly demanding and long term care can result in a perceived heavy care burden which has negative consequences for the carer’s well-being. The informal care experience is thus characterised by its ambiguous nature (Al-Janabi et al. 2010). The municipality of Kruibeke has been a forerunner in providing a cash allowance to people caring for needy persons at home. Its local Public Centre of Social Welfare (PCSW) thought that informal caregivers would need more and better support and decided in 2007 to fund an in-depth local survey. The target group consisted of both the local informal caregivers who at that time benefited from a home care allowance, as well as the care recipients themselves. The lessons from this survey are obviously relevant for the
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Kruibeke policymakers but, given the rather average character of the Kruibeke municipality in Flanders and Belgium, also provide a good overview of the challenges and perspectives of informal care throughout the country. Context, Objectives and Methods of the Study The municipality of Kruibeke has 15,000 inhabitants. In 1991, the PCSW started with a home care cash benefit for residents who take care of an elderly person ([65 years), who is living with them, who is of limited financial means, and who is in need of help. An application had to be made to the PCSW, which was then subject to a social and financial investigation. The height of the monthly allowance depended on the level of care needed (determined via a scoring system1) and initially varied between 25 and 75 Euro. The number of recipients of the Kruibeke PCSW’s care allowance tripled in the period 2002–2008 and the earmarked budget amounted to nearly 120,000 Euro in 2008. In consultation with the communal council, this budget was fully funded by own means. The study about informal care in Kruibeke was motivated by a growing awareness of the need to support caregivers. The PCSW was looking for evidence to be translated into a concrete and evidence-based policy plan. As soon as the decision was taken to organize a study, it was proposed that the survey be extended to the care recipients in order to explore their perception of informal care (rs). The objective of the study was thus first and foremost to get a better insight in the way in which care is administered (which type of care? at what frequency? during how much time? etc.) and to identify the specific needs of the informal caregiver. Data were collected in the autumn of 2007 by two interviewers (social workers familiar with the local context and known by the interviewees), through semi-structured interviews with both caregivers and care recipients. The questionnaires for the informal caregivers and their ‘‘patients’’ were designed jointly by all the authors and pre-tested before the start of the study. The two interviewers, who also co-author this paper, actively participated in these processes. The first two parts of the survey looked at the profile of the informal caregiver/recipient; the third part looked into the relationship with professional home care services. The target group included all informal caregivers of the Kruibeke municipality who received an allowance at the time of the study as well as those entitled to one in a near future. Since it was operationally possible to visit all these people, the investigators decided not to take a sample. Everyone who agreed to take part in the study and who was verbally and mentally able to answer the questions was included. A 1
The Katz basic activities of daily living (ADL) scale.
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total of 178 informal caregivers and the 174 ‘corresponding’ care recipients were surveyed. The interviews were carried out at the home of respectively the caregiver and the patient. Moreover, the two interviewers were asked to systematically write down their impressions, including about the relationship caregiver-patient, the perceived work burden, etc. The circumstances of the survey were not always straightforward. A separate survey in time and space for informal caregivers and their patients respectively was often difficult. Both wanted to be present and in a number of cases the recipient needed the help of the carer in answering the questions. On a number of occasions the survey could not be carried out because the care recipient suffered from dementia, confusion, was hard of hearing or even fell asleep. Only in 7 out of 10 situations was it possible to carry out the survey autonomously. In other instances, this was impossible because of the poor general condition of the patient and a third person had to attend and help out. This makes the results of the care recipient survey somewhat less reliable than the one of the caregivers. In the case of two migrant families, the language presented a problem. A descriptive analysis of the quantitative data was done using SPSS 17.0 software (SPSS, Chicago, IL, USA). The qualitative data were reviewed using a content analysis, with a special attention to the categories: formulation of the perception to receive or to provide informal care and the attitude of interviewees towards professional care.
Results The presentation of results is structured in two parts. In a first part the main quantitative results of the survey are presented. In the second part, the qualitative responses of both carers and recipients and the personal impressions of the interviewers are described. A total of 122 care recipients and 178 care givers was included in the analysis. A few interviewees did not answer to all questions (mainly at the end of the questionnaire, due to personal time constraints), which is reflected in the totals in the text below. Part 1 The vast majority of caregivers in the Kruibeke municipality looks after one single person. Nine people provide care for more than one care recipient and one caregiver even looks after 4 people. In 4 out of 10 cases (71/178) the recipient is the partner of the caregiver. In 4 out of 10 cases (74/174) the care receiver is a parent. The other cases involve a child or another relative. Very rarely (in the case of two informal carers) the recipient was not a family member of the carer. In 55 % of cases (101/174) the care
recipient lives with the caregiver. In about 2/3 of cases (108/174) there are other carers besides the respondent, in most cases the son or daughter of the caregiver, sometimes the brother or sister. The average age of the carer is 71 years old when he/she is the partner of the patient and 56 years old in case he/she cares for his/her parents. Only five caregivers were younger than 40. Regardless of the relationship to the recipient, the majority of caregivers are women (123/174). The support which the caregiver provides varies and generally takes up considerable time. In half of the cases, the care has been provided for more than 4 years, and in one instance for more than 50 years. When probed about the motivation of the caregiver, 65 % of respondents (107/174) refer to strong family ties: the recipient is her/his partner/husband/wife. The other reasons given recur less frequently and are very diverse: I like it; I am the best person to do it; out of necessity; I am the only one available; I already do all the housework and have added the care as well; or, out of gratitude. There is one response that stands out: 3 out of 10 caregivers (48/174) find it their duty to provide care when the recipient is a partner but equally when it concerns a parent or when there exists another relationship with the caregiver. We also asked about the individual carer’s experiences in providing care. The top three cited problems are: psychological and emotional stress (35 %, 58/174), physical stress (25 %, 41/174), which is especially the case when the recipient is the partner, and practical and organizational problems (24 %, 39/174) which crop up when the care receiver does not live with the caregiver. It is worth mentioning that about 15 % of carers (25/174) experience problems in their social life as a result of the care they provide and 11 % (18/ 174) refer to the financial burden. When questioned about possible difficulties in combining work and housekeeping with caregiving, just over half (53 %, 87/174) say they have little or no problems with it. In 27 % (45/174) of cases it is a recurring daily problem. In 20 % (32/174) of cases the burden varies from day to day. When possible, the vast majority of caregivers kept their outside job. Nearly one in four carers (22 %, 37/174) said they needed additional support. In the case of ‘‘partner-carers’’, one in three indicated that they need additional support compared to one in five of the other caregivers. If professional home care is available, it was taken up in slightly more than half of the cases (54 %, 66/122) after a hospital stay, in one out of four cases (31/122) at the request of the caregiver. The information the caregiver has about these professional services was obtained from their mutual health organisation, a family member, neighbours and acquaintances. When professional home care is called upon, the vast majority of caregivers assessed this cooperation as positive. A majority of informal care respondents found information on homecare sufficiently accessible (72 %, 119/165). But
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more than 1 in 4 (43/165) believes it could be improved. The best known services are nursing care (86 % of carers; 142/165), the home cleaning service (78 %, 128/165) and the meals-on-wheels service (73 %, 121/165). Only about half of the carers are aware of the Personal Alarm System2 (PAS), and slightly less than half is familiar with the family help services and the existence of the handicar.3 Half of the care recipients are over 81 years old. Nearly all say they are satisfied with the informal care they receive. However, 1 in 4 (33/122) believes that it would be beneficial for the caregiver to receive extra help. The subjective health status, as perceived by the recipient himself is not good. 95 % (116/122) complains about mobility problems, nearly 9 out of 10(107/122) about difficulties with carrying out daily activities, and nearly 7 out of 10 (83/122) about anxiety, gloom and nostalgia. Almost two-thirds (77/122) have a serious illness. They say they need help mainly for the following activities: household work (almost everyone 121/122), going outdoors (94 %, 115/122), administrative tasks (86 %, 105/122), personal care (80 %, 98/122), but also emotional support (63 %, 77/122). When probed about the intensity of the contact with people other than the carer, 13 % (16/122) states not having had any social contact in the last 7 days. 70 % (86/122) of the people receiving informal care at home (we call them ‘‘patients’’ henceforth) also rely on some form of professional homecare. The information about these services is most often provided by family members, to a lesser extent by the mutual health organisation or the health care provider. The best known services are nursing care, meals-on-wheels and the home cleaning service. Lesser known are the home care services, PAS and handicar. Nearly 6 out of 10 patients (71/122) complain about poor access to professional home care services. Most of the ones who use these services (86 patients), are satisfied with them (78 %, 66/86). Professional home care is most often called upon after a hospital admission. The most frequently cited ‘‘obstacle’’ when starting professional home care is of a psychological– emotional nature, according to the recipients of care (38 %, 46/122). Only 3 % (4/122) of them mentioned a financial barrier.
care for psychiatric patients. Some statements specify this: it is very hard; I have the feeling that I am pulled from all sides; I have reached my limits; I worry about the future, or, informal care causes a lot of stress. From the perspective of the recipient, the decline is sometimes difficult to accept and induces feelings of despondency, embarrassment, even humiliation and bitterness. Several caregivers indicated that they would like to meet up with others in the same position but that they do not have the time. The vast majority was very satisfied with the care allowance—it is a nice bonus—but suggested that even without this cash benefit they would take on the ‘‘job’’. In general, we found a positive attitude towards professional home care, although the recipients more than once objected to home help provided by ‘‘unfamiliar’’ carers. The resistance is more widespread than might be suspected—despite the aforementioned perception that informal care is experienced as a heavy burden. It also appears that both the caregiver and the care recipient often have no clear view of the home help services on offer. There is a real need for integrated information as people are not always well informed about the nature of the existing services (both in the public and the private sector). They find it difficult to find their way in the fragmented and inadequately coordinated tangle of care providers. Sometimes the use of these services is self-stigmatizing: for example, collecting free bin bags for incontinent people at the municipal offices is seen by some as humiliating. The discussions revealed that the role of the general practitioner (GP) in providing information is very important. He or she is a confidante and makes regular house calls. It also became obvious that there are large differences in the information provided by the different GPs to their patients. The need for a professional day care centre in the home municipality was also cited. The demand for residential care was addressed on a number of occasions: a great number of people worried about the long waiting lists for nursing homes. In a smaller number of cases (N = 6) the current situation is hardly tenable and there is a great urgency for a place in a residential home. This is a source of great dissatisfaction and frustration.
Part 2 Discussion The qualitative data reveal that despite informal care being willingly provided, it is still perceived as a heavy burden especially if the recipient is not the partner or in the case of 2
An electronic device the elderly person wears around his/her neck and through which he can call for help in case of an emergency (e.g. after a fall) by simply pressing a button. 3 A car adapted to the transportation of physically handicapped persons, such as wheelchair users.
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This study gives a more accurate picture of the profile of the informal carer at local municipal level in Belgium—or at least of those carers who are in regular contact with the local PCSW and who receive a monthly care allowance. Kruibeke is indeed reasonably representative of the overall Belgian situation. Although THE informal carer does not exist as such, the profile of the informal carer in Kruibeke can be clearly defined: a married woman, aged over 60,
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with two children, either a housewife or retired, living in her own house with her husband, and caring for one person, usually her partner or one of her parents. In half of the cases, the care recipient lives in the same house as the caregiver. In almost all situations, the caregiver carries out the household tasks and in three quarters of cases also the personal care. There is a priori no reason to believe that this profile would be significantly different from the other semirural settings in Belgium. As far as the relationship between the informal carer and the patient is concerned, it confirms what other studies show i.e. that (intensive) informal care is first and foremost a family affair (Masuy 2011). The vast majority helps their partner or a parent. Only a small minority helps a friend or a neighbour. The care recipients in this study make relatively little use of professional home care services, except for home nursing. According to the care givers there is sufficient information about these services, but more than half of the care recipients disagree. The information needs of informal caregivers have been stressed in other studies as well: it seems that lack of information is a key factor preventing many caregivers from adequately accessing support service (Lamura et al. 2008; Roelands et al. 2008). It is also striking that nearly one in six patients state that the informal carer was his/her ‘only’ social contact in the last 7 days. This clearly underlines the stress and the expectations as to the ‘social’ role of the informal carer. Worth noting is the fact that both interviewers had the feeling that the survey left on the whole a very positive impression. There is obviously a great need for ‘a listening ear’ both for the patient and the carer. Besides the informal care practice, other themes that came up were hobby’s, family affairs, memories from times past (Worldwar II), in a number of cases the loss of a child. Both the caregivers and the recipients were sometimes very emotional and many wept during the interviews. The vast majority were extremely grateful that someone came along to listen to their story and showed an interest in their situation. Repeatedly after the interview the interviewer got an invitation to call again. There was also interest in the results of the survey. The questions about the health of the care recipient were frankly answered and many talked in great depth and without embarrassment or hesitation about their situation. It seems that despite informal and potential professional home care, many patients are very lonely. Our study shows that informal care is also a heavy burden. This is not new but still gives rise to policy considerations. Informal care is perceived as burdensome by the parties, nearly one in four caregivers hinted that they would like additional support. One in four care recipients also believed that the caregiver needed extra help. The specific suggestion formulated in the survey to ‘‘get together’’ with other caregivers was dismissed however, with carers saying they
do not have time for that. Research has demonstrated that informal carers need to overcome resistance regarding the involvement of professional help for the patient they care for (De Koker 2009; Winslow 2003). It is therefore not inconceivable that caregivers are hesitant to get some form of professional support for themselves. Thinking about informal carers as ‘‘people with their own needs’’ is a relatively new concept and a systematic assessment of carers’ needs remains far from routine (Lamura et al. 2008). The study also points to the importance of a coordinated and integrated approach to care for the elderly in their home setting. At this point we agree with Lopez Hartmann et al. (2012, p. 14) who state that: ‘‘Integrated support packages where the content of the package is tailored to the individual caregivers’ physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved’’.
Conclusion There is a great and justified interest in informal care in Belgium. Informal care is intrinsically valuable and can contribute to more efficient care in the home setting of the care recipient. However, this type of care constitutes a heavy burden and is only a component of the broader spectrum of home care. It is therefore not without its limitations. This study draws a clearer picture of local expression and perception of informal care at local municipal level in Belgium and includes a number of lessons for the social policy plans of local authorities. There is the need for more action-oriented research to give a broader meaning to the support of informal caregivers. Due attention should be given to more and better coordination of the different carers operating in the local social medical system. The role of local authorities in this endeavour is of paramount importance.
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BRIEF REPORT
Informal Home Care for Elderly in Belgium: A Study on the Features and Challenges of Informal Care at Local Level Bart Criel • Veerle Vanlerberghe • Benedicte De Koker Bieke Decraene • Elke Engels • Riet Waltens
•
Received: 6 September 2012 / Accepted: 13 January 2014 Ó Springer Science+Business Media New York 2014
Abstract In Belgium, and in other OECD countries, there is a growing awareness about the importance of informal home care for the elderly’s well-being. Informal care is considered as an intrinsically valuable social phenomenon. Public authorities in Belgium have been advocating an active policy of support for informal carers. In 2007, an extensive survey was carried out in the Belgian municipality of Kruibeke in order to establish a better picture of the various needs of the elderly in their home situation, but also to better understand the way in which informal care is provided and perceived by care receivers and care givers. The study points to the need for support for the difficult burden of informal care and highlights the need for a coordinated and integrated approach to elderly care. Keywords Elderly Well-being Informal care Home care Belgium
Bart Criel was chairman of the Public Centre of Social Welfare in Kruibeke from April 2001 to July 2008. B. Criel (&) V. Vanlerberghe Department of Public Health, Institute of Tropical Medicine, Nationalestraat 155, 2000 Antwerp, Belgium e-mail: [email protected] B. Criel B. Decraene E. Engels R. Waltens Public Centre of Social Welfare (PCSW) Kruibeke, Kruibekestraat 12, 9150 Kruibeke, Belgium B. De Koker Department of Sociology, University of Antwerp, Sint-Jacobstraat 2, 2000 Antwerp, Belgium
Introduction Informal care is fairly widespread in Belgium and other European countries (Burau et al. 2007; Pickard 2011). According to the 2001 Socio-Economic Survey (the former population ‘‘census’’), 9 % of Belgians living in the Flemish region aged 15? cares at least once a week for one or more individuals with a long-term illness, disorder or disability, outside the context of their normal occupation (Farfan-Portet et al. 2010). The Flemish Centre for Population and Family Studies defines 19 % of 25- to 64-yearolds as (intensive) informal caregivers (Jacobs et al. 2005). The Panel Study of Belgian Households (PSBH) identified 6 % of Belgians aged 16 and older as informal caregivers (Declercq and Van Audenhove 2004). The figure varies according to the criteria used and the questions asked. There is as yet no clear method for measuring informal care (Jacobs et al. 2005; Masuy 2011). Studies from the perspective of care recipients acknowledge the great contribution made by informal carers. For the elderly, informal care prevails over professional care for most care tasks (Geerts 2009; Vanderleyden and Vanden Boer 2004). Although the contribution made by informal caregivers declined slightly in the last decades, it is still and by far the biggest source of help for the elderly (De Koker et al. 2007). Studies from other countries than Belgium confirm these findings: according to Tester (Tester 1996) informal care accounts for 75–80 % of all care in the US and in a number of European countries. In an environment of fragmented and poorly coordinated care systems, like is the case in Belgium, the informal caregiver is often the best person to monitor the progression of the patient’s problems (Levine et al. 2010; Chartreau et al. 2006). Today, governments and researchers show a keen interest in informal care for the elderly and
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intergenerational relationships. There is a growing awareness that professional care is unable to cope with the ever increasing need for care in Belgian society. This interest in informal care, and by extension in home care contains contradictions (Exley and Allen 2007): there is the danger of an over-romanticized notion of informal care on the one hand and the need to guard against it becoming a sort of (politically correct) makeshift to cope with the (large) deficits and (high) costs in the professional and/or residential care for the elderly on the other hand. The political choice in favour of home care imposes a greater burden on individual citizens, more specifically on the informal caregiver. Research shows that informal carers suffer poorer mental health compared to people who do not give care or the general population. These caregivers show increased symptoms of depression, anxiety disorders and psychological stress than their non-caregiving peers or the general population (Marks et al. 2002; Hirst 2003; Pinquart and So¨rensen 2007; Schoenmakers et al. 2004). Although the results about their physical health are less unambiguous (Taylor et al. 1995; Hirst 2004), several studies found that informal care is associated with poorer subjective health, greater physical health problems, a lower immunity and even a higher risk of mortality (Schulz and Beach 1999; Vitaliano et al. 2003; Barrow and Harrison 2005; FarfanPortet et al. 2010). Informal caregivers are therefore often described as ‘hidden patients’ (Fengler and Goodrich 1979). There is also a social and financial impact. Intensive caregiving can lead to a loss of social contacts and a higher risk of social isolation (Fast et al. 1999). It can also lead to worsening household finances because of the cost of care and the loss of income (Fast et al. 1999; Heitmueller and Inglis 2007). On the other hand, the care commitment has a number of positive outcomes: 52 % of Flemish informal caregivers indicated that it gives meaning to their life, while 56 % find it an enriching experience (Vanbrabant and Craeynest 2004). One in ten carers in the study of de Boer et al. (2009) even indicated that he/she became happier in the process. This does however not take away the fact that highly demanding and long term care can result in a perceived heavy care burden which has negative consequences for the carer’s well-being. The informal care experience is thus characterised by its ambiguous nature (Al-Janabi et al. 2010). The municipality of Kruibeke has been a forerunner in providing a cash allowance to people caring for needy persons at home. Its local Public Centre of Social Welfare (PCSW) thought that informal caregivers would need more and better support and decided in 2007 to fund an in-depth local survey. The target group consisted of both the local informal caregivers who at that time benefited from a home care allowance, as well as the care recipients themselves. The lessons from this survey are obviously relevant for the
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Kruibeke policymakers but, given the rather average character of the Kruibeke municipality in Flanders and Belgium, also provide a good overview of the challenges and perspectives of informal care throughout the country. Context, Objectives and Methods of the Study The municipality of Kruibeke has 15,000 inhabitants. In 1991, the PCSW started with a home care cash benefit for residents who take care of an elderly person ([65 years), who is living with them, who is of limited financial means, and who is in need of help. An application had to be made to the PCSW, which was then subject to a social and financial investigation. The height of the monthly allowance depended on the level of care needed (determined via a scoring system1) and initially varied between 25 and 75 Euro. The number of recipients of the Kruibeke PCSW’s care allowance tripled in the period 2002–2008 and the earmarked budget amounted to nearly 120,000 Euro in 2008. In consultation with the communal council, this budget was fully funded by own means. The study about informal care in Kruibeke was motivated by a growing awareness of the need to support caregivers. The PCSW was looking for evidence to be translated into a concrete and evidence-based policy plan. As soon as the decision was taken to organize a study, it was proposed that the survey be extended to the care recipients in order to explore their perception of informal care (rs). The objective of the study was thus first and foremost to get a better insight in the way in which care is administered (which type of care? at what frequency? during how much time? etc.) and to identify the specific needs of the informal caregiver. Data were collected in the autumn of 2007 by two interviewers (social workers familiar with the local context and known by the interviewees), through semi-structured interviews with both caregivers and care recipients. The questionnaires for the informal caregivers and their ‘‘patients’’ were designed jointly by all the authors and pre-tested before the start of the study. The two interviewers, who also co-author this paper, actively participated in these processes. The first two parts of the survey looked at the profile of the informal caregiver/recipient; the third part looked into the relationship with professional home care services. The target group included all informal caregivers of the Kruibeke municipality who received an allowance at the time of the study as well as those entitled to one in a near future. Since it was operationally possible to visit all these people, the investigators decided not to take a sample. Everyone who agreed to take part in the study and who was verbally and mentally able to answer the questions was included. A 1
The Katz basic activities of daily living (ADL) scale.
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total of 178 informal caregivers and the 174 ‘corresponding’ care recipients were surveyed. The interviews were carried out at the home of respectively the caregiver and the patient. Moreover, the two interviewers were asked to systematically write down their impressions, including about the relationship caregiver-patient, the perceived work burden, etc. The circumstances of the survey were not always straightforward. A separate survey in time and space for informal caregivers and their patients respectively was often difficult. Both wanted to be present and in a number of cases the recipient needed the help of the carer in answering the questions. On a number of occasions the survey could not be carried out because the care recipient suffered from dementia, confusion, was hard of hearing or even fell asleep. Only in 7 out of 10 situations was it possible to carry out the survey autonomously. In other instances, this was impossible because of the poor general condition of the patient and a third person had to attend and help out. This makes the results of the care recipient survey somewhat less reliable than the one of the caregivers. In the case of two migrant families, the language presented a problem. A descriptive analysis of the quantitative data was done using SPSS 17.0 software (SPSS, Chicago, IL, USA). The qualitative data were reviewed using a content analysis, with a special attention to the categories: formulation of the perception to receive or to provide informal care and the attitude of interviewees towards professional care.
Results The presentation of results is structured in two parts. In a first part the main quantitative results of the survey are presented. In the second part, the qualitative responses of both carers and recipients and the personal impressions of the interviewers are described. A total of 122 care recipients and 178 care givers was included in the analysis. A few interviewees did not answer to all questions (mainly at the end of the questionnaire, due to personal time constraints), which is reflected in the totals in the text below. Part 1 The vast majority of caregivers in the Kruibeke municipality looks after one single person. Nine people provide care for more than one care recipient and one caregiver even looks after 4 people. In 4 out of 10 cases (71/178) the recipient is the partner of the caregiver. In 4 out of 10 cases (74/174) the care receiver is a parent. The other cases involve a child or another relative. Very rarely (in the case of two informal carers) the recipient was not a family member of the carer. In 55 % of cases (101/174) the care
recipient lives with the caregiver. In about 2/3 of cases (108/174) there are other carers besides the respondent, in most cases the son or daughter of the caregiver, sometimes the brother or sister. The average age of the carer is 71 years old when he/she is the partner of the patient and 56 years old in case he/she cares for his/her parents. Only five caregivers were younger than 40. Regardless of the relationship to the recipient, the majority of caregivers are women (123/174). The support which the caregiver provides varies and generally takes up considerable time. In half of the cases, the care has been provided for more than 4 years, and in one instance for more than 50 years. When probed about the motivation of the caregiver, 65 % of respondents (107/174) refer to strong family ties: the recipient is her/his partner/husband/wife. The other reasons given recur less frequently and are very diverse: I like it; I am the best person to do it; out of necessity; I am the only one available; I already do all the housework and have added the care as well; or, out of gratitude. There is one response that stands out: 3 out of 10 caregivers (48/174) find it their duty to provide care when the recipient is a partner but equally when it concerns a parent or when there exists another relationship with the caregiver. We also asked about the individual carer’s experiences in providing care. The top three cited problems are: psychological and emotional stress (35 %, 58/174), physical stress (25 %, 41/174), which is especially the case when the recipient is the partner, and practical and organizational problems (24 %, 39/174) which crop up when the care receiver does not live with the caregiver. It is worth mentioning that about 15 % of carers (25/174) experience problems in their social life as a result of the care they provide and 11 % (18/ 174) refer to the financial burden. When questioned about possible difficulties in combining work and housekeeping with caregiving, just over half (53 %, 87/174) say they have little or no problems with it. In 27 % (45/174) of cases it is a recurring daily problem. In 20 % (32/174) of cases the burden varies from day to day. When possible, the vast majority of caregivers kept their outside job. Nearly one in four carers (22 %, 37/174) said they needed additional support. In the case of ‘‘partner-carers’’, one in three indicated that they need additional support compared to one in five of the other caregivers. If professional home care is available, it was taken up in slightly more than half of the cases (54 %, 66/122) after a hospital stay, in one out of four cases (31/122) at the request of the caregiver. The information the caregiver has about these professional services was obtained from their mutual health organisation, a family member, neighbours and acquaintances. When professional home care is called upon, the vast majority of caregivers assessed this cooperation as positive. A majority of informal care respondents found information on homecare sufficiently accessible (72 %, 119/165). But
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more than 1 in 4 (43/165) believes it could be improved. The best known services are nursing care (86 % of carers; 142/165), the home cleaning service (78 %, 128/165) and the meals-on-wheels service (73 %, 121/165). Only about half of the carers are aware of the Personal Alarm System2 (PAS), and slightly less than half is familiar with the family help services and the existence of the handicar.3 Half of the care recipients are over 81 years old. Nearly all say they are satisfied with the informal care they receive. However, 1 in 4 (33/122) believes that it would be beneficial for the caregiver to receive extra help. The subjective health status, as perceived by the recipient himself is not good. 95 % (116/122) complains about mobility problems, nearly 9 out of 10(107/122) about difficulties with carrying out daily activities, and nearly 7 out of 10 (83/122) about anxiety, gloom and nostalgia. Almost two-thirds (77/122) have a serious illness. They say they need help mainly for the following activities: household work (almost everyone 121/122), going outdoors (94 %, 115/122), administrative tasks (86 %, 105/122), personal care (80 %, 98/122), but also emotional support (63 %, 77/122). When probed about the intensity of the contact with people other than the carer, 13 % (16/122) states not having had any social contact in the last 7 days. 70 % (86/122) of the people receiving informal care at home (we call them ‘‘patients’’ henceforth) also rely on some form of professional homecare. The information about these services is most often provided by family members, to a lesser extent by the mutual health organisation or the health care provider. The best known services are nursing care, meals-on-wheels and the home cleaning service. Lesser known are the home care services, PAS and handicar. Nearly 6 out of 10 patients (71/122) complain about poor access to professional home care services. Most of the ones who use these services (86 patients), are satisfied with them (78 %, 66/86). Professional home care is most often called upon after a hospital admission. The most frequently cited ‘‘obstacle’’ when starting professional home care is of a psychological– emotional nature, according to the recipients of care (38 %, 46/122). Only 3 % (4/122) of them mentioned a financial barrier.
care for psychiatric patients. Some statements specify this: it is very hard; I have the feeling that I am pulled from all sides; I have reached my limits; I worry about the future, or, informal care causes a lot of stress. From the perspective of the recipient, the decline is sometimes difficult to accept and induces feelings of despondency, embarrassment, even humiliation and bitterness. Several caregivers indicated that they would like to meet up with others in the same position but that they do not have the time. The vast majority was very satisfied with the care allowance—it is a nice bonus—but suggested that even without this cash benefit they would take on the ‘‘job’’. In general, we found a positive attitude towards professional home care, although the recipients more than once objected to home help provided by ‘‘unfamiliar’’ carers. The resistance is more widespread than might be suspected—despite the aforementioned perception that informal care is experienced as a heavy burden. It also appears that both the caregiver and the care recipient often have no clear view of the home help services on offer. There is a real need for integrated information as people are not always well informed about the nature of the existing services (both in the public and the private sector). They find it difficult to find their way in the fragmented and inadequately coordinated tangle of care providers. Sometimes the use of these services is self-stigmatizing: for example, collecting free bin bags for incontinent people at the municipal offices is seen by some as humiliating. The discussions revealed that the role of the general practitioner (GP) in providing information is very important. He or she is a confidante and makes regular house calls. It also became obvious that there are large differences in the information provided by the different GPs to their patients. The need for a professional day care centre in the home municipality was also cited. The demand for residential care was addressed on a number of occasions: a great number of people worried about the long waiting lists for nursing homes. In a smaller number of cases (N = 6) the current situation is hardly tenable and there is a great urgency for a place in a residential home. This is a source of great dissatisfaction and frustration.
Part 2 Discussion The qualitative data reveal that despite informal care being willingly provided, it is still perceived as a heavy burden especially if the recipient is not the partner or in the case of 2
An electronic device the elderly person wears around his/her neck and through which he can call for help in case of an emergency (e.g. after a fall) by simply pressing a button. 3 A car adapted to the transportation of physically handicapped persons, such as wheelchair users.
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This study gives a more accurate picture of the profile of the informal carer at local municipal level in Belgium—or at least of those carers who are in regular contact with the local PCSW and who receive a monthly care allowance. Kruibeke is indeed reasonably representative of the overall Belgian situation. Although THE informal carer does not exist as such, the profile of the informal carer in Kruibeke can be clearly defined: a married woman, aged over 60,
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with two children, either a housewife or retired, living in her own house with her husband, and caring for one person, usually her partner or one of her parents. In half of the cases, the care recipient lives in the same house as the caregiver. In almost all situations, the caregiver carries out the household tasks and in three quarters of cases also the personal care. There is a priori no reason to believe that this profile would be significantly different from the other semirural settings in Belgium. As far as the relationship between the informal carer and the patient is concerned, it confirms what other studies show i.e. that (intensive) informal care is first and foremost a family affair (Masuy 2011). The vast majority helps their partner or a parent. Only a small minority helps a friend or a neighbour. The care recipients in this study make relatively little use of professional home care services, except for home nursing. According to the care givers there is sufficient information about these services, but more than half of the care recipients disagree. The information needs of informal caregivers have been stressed in other studies as well: it seems that lack of information is a key factor preventing many caregivers from adequately accessing support service (Lamura et al. 2008; Roelands et al. 2008). It is also striking that nearly one in six patients state that the informal carer was his/her ‘only’ social contact in the last 7 days. This clearly underlines the stress and the expectations as to the ‘social’ role of the informal carer. Worth noting is the fact that both interviewers had the feeling that the survey left on the whole a very positive impression. There is obviously a great need for ‘a listening ear’ both for the patient and the carer. Besides the informal care practice, other themes that came up were hobby’s, family affairs, memories from times past (Worldwar II), in a number of cases the loss of a child. Both the caregivers and the recipients were sometimes very emotional and many wept during the interviews. The vast majority were extremely grateful that someone came along to listen to their story and showed an interest in their situation. Repeatedly after the interview the interviewer got an invitation to call again. There was also interest in the results of the survey. The questions about the health of the care recipient were frankly answered and many talked in great depth and without embarrassment or hesitation about their situation. It seems that despite informal and potential professional home care, many patients are very lonely. Our study shows that informal care is also a heavy burden. This is not new but still gives rise to policy considerations. Informal care is perceived as burdensome by the parties, nearly one in four caregivers hinted that they would like additional support. One in four care recipients also believed that the caregiver needed extra help. The specific suggestion formulated in the survey to ‘‘get together’’ with other caregivers was dismissed however, with carers saying they
do not have time for that. Research has demonstrated that informal carers need to overcome resistance regarding the involvement of professional help for the patient they care for (De Koker 2009; Winslow 2003). It is therefore not inconceivable that caregivers are hesitant to get some form of professional support for themselves. Thinking about informal carers as ‘‘people with their own needs’’ is a relatively new concept and a systematic assessment of carers’ needs remains far from routine (Lamura et al. 2008). The study also points to the importance of a coordinated and integrated approach to care for the elderly in their home setting. At this point we agree with Lopez Hartmann et al. (2012, p. 14) who state that: ‘‘Integrated support packages where the content of the package is tailored to the individual caregivers’ physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved’’.
Conclusion There is a great and justified interest in informal care in Belgium. Informal care is intrinsically valuable and can contribute to more efficient care in the home setting of the care recipient. However, this type of care constitutes a heavy burden and is only a component of the broader spectrum of home care. It is therefore not without its limitations. This study draws a clearer picture of local expression and perception of informal care at local municipal level in Belgium and includes a number of lessons for the social policy plans of local authorities. There is the need for more action-oriented research to give a broader meaning to the support of informal caregivers. Due attention should be given to more and better coordination of the different carers operating in the local social medical system. The role of local authorities in this endeavour is of paramount importance.
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