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Do informal caregivers for elderly in the community use support measures? A qualitative study in five European countries
© The Author(s). 2016
Received: 11 January 2016
Accepted: 24 June 2016
Published: 16 July 2016
Informal caregivers are essential figures for maintaining frail elderly at home. Providing informal care can affect the informal caregivers’ physical and psychological health and labour market participation capabilities. They need support to prevent caregiver burden. A variety of existing support measures can help the caregiver care for the elderly at home, but with some limitations. The objective of this review was to explore the experiences of informal caregivers caring for elderly in the community with the use of supportive policy measures in Belgium and compare these to the experiences in other European countries.
An empirical qualitative case study research was conducted in five European countries (Belgium, The Netherlands, Luxembourg, France and Germany). Semi-structured interviews were conducted with informal caregivers and their dependent elderly. Interview data from the different cases were analysed. In particular data from Belgium was compared to data from the cases abroad.
Formal services (e.g. home care) were reported to have the largest impact on allowing the caregiver to care for the dependent elderly at home. One of the key issues in Belgium is the lack of timely access to reliable information about formal and informal services in order to proactively support the informal caregiver. Compared to the other countries, informal caregivers in Belgium expressed more difficulties in accessing support measures and navigating through the health system. In the other countries information seemed to be given more timely when home care was provided via care packages.
To support the informal caregiver, who is the key person to support the frail elderly, fragmentation of information regarding supportive policy measures is an important issue of concern.
Keywords(Family) caregivers Continuity of care Long term care Primary care Support
The European population is aging rapidly, and the number of very old people in particular will increase in the coming decades. Aging is accompanied by a decrease in health and an increase in the number of chronic diseases. It is expected that the ageing population will increase the need and consumption of long-term care in Europe over time [1, 2].
According to the Organisation for Economic Cooperation and Development (OECD), long-term care is “a range of services required by persons with a reduced degree of functional capacity, physical or cognitive, and who are consequently dependent for an extended period of time on help with basic activities of daily living (ADL)”. Long term care includes both formal and informal care . Formal care refers to provisions to dependent people by health and social care professionals within regulated employment relationships. Informal care refers to the care or support given on a voluntary basis to a dependent elderly by a family member, friend or acquaintance .
In Belgium and in other OECD countries, there is a growing awareness of the importance of informal care for the organisation of the present and future health care system . The need for support and the need for a coordinated and integrated approach for elderly care is highlighted in several studies in Belgium [4, 5]. The care transition process, with an increasing attention for informal home care, offers a critical opportunity to treat informal caregivers as important care partners . The family is described as the biggest source of help for the elderly and for the sustainability of our chronic health care system .
However, providing informal care can affect the informal caregivers’ physical and psychological health and labour market participation capabilities . In order to counter the possible negative impact of providing informal care on these aspects, policies have been implemented in different countries to provide financial support, improve the balance between working and caring, and enhance the informal caregiver’s wellbeing .
In recent years, several studies have provided detailed descriptions of available policies in different countries [3, 7]. The studies point out that the way in which support is actually provided does not correspond with one single pathway and that the effectiveness of the measures is not easily assessed . The latter may be partially related to the fact that measures to provide informal caregivers with support are scattered in different sectors of the social security system. Due to the diversity in caregivers’ needs, the uncertainty on the effectiveness of measures and the complexity of social security systems it is difficult to create a comprehensive policy framework responding to the needs of all informal caregivers. Yet, there is some evidence that a comprehensive set of measures and integrated support packages tailored to the individual needs are required to support caregivers of frail elderly in order to prevent caregiver burden [8, 9].
This study builds an innovative approach to the evaluation of support measures for informal caregivers using a single and comprehensive framework to assess existing policy measures in five countries, i.e. Belgium, France, Germany, Luxembourg and the Netherlands . In particular data from Belgium is compared to data from the cases abroad.
Design of the study and setting
Each case contains subunits of analysis (the participants) consisting of the dependent elderly and his/her main informal caregiver. For each subunit, we studied the informal caregivers’ and the dependent elderly’s experiences and perceptions of support services provided to them by the different competent authorities. The differences within the cases, divided in a seven topic framework (see Additional file 1) were constructed to assess the different support measures identified in the different countries. A detailed description of the policy measures can be found in Anthierens et al. . All cases were analysed, with a special focus on Belgium with the aim of contributing towards a new policy for informal caregivers.
Sample frame of subunits
1. A necessary condition for inclusion of ICG and DEP is having the ability to carry out the interviews separately with the DEP and the ICG. So, it is important that the GP or the person who contacts the informal caregiver and his/her dependent elderly asks whether this is possible before the interview takes place.
2. Ideally, we aim to interview subunits but in some situations, it will not be possible to interview the dependent elderly. For each case study, we have to interview at least 3 subunits.
3. When it is possible to interview the subunit, it is important to have the first interview with the caregiver, in order not to burden the dependent elderly with too many questions (that we have already covered with the caregiver).
4. It is important for the GP who recruits the subunits that he/she has ‘common situations’ in mind (cases that occur often in the practice, not the exceptions) (ideally we recruit people with a variety of medical conditions but we need at least 2 people with dementia). The caregiver has taken up his/her role for at least 1 year. Common cases should include subunits receiving a lot of formal services as well as little or no services at all according to the GP. This can apply to people living in the community or in an institution (level of services refers to the situation before institutionalization).
5. In addition to this, the dependent elderly needs to be 70 years or older and not being :
o in palliative care.
o hospitalised in the past four weeks
o having an acute disease
6. We keep a mix between spouse, child caregivers (the exact number will be defined by the sampling)
7. Two dependent elderly institutionalized but less than four months (at least 1 people with dementia), Three in the community (at least 1 people with dementia).
8. Select at least two caregivers who are in paid employment.
9. At least 1 man as caregiver
An interview guide for semi-structured interviews was developed in English. A first version of the guide for the elderly living in the community was prepared by three researchers and separate semi-structured guides were constructed for the institutionalised elderly. The first version of the guide was compared with three recent surveys in order to ensure that all relevant topics were included (e.g. basic questionnaire, definition of care tasks) [11–13]. The new version was then reviewed by the research team. Afterwards, questions were translated in English and then translated again into the languages of the participating countries.
The interview guide consisted of open ended questions (Appendix Table 3). Questions and interview topics were based on an analysis of existing policies (formal and informal) available to caregivers in their respective country .
Five experienced researchers, one for each country, conducted the interviews. For each case, the analysis was done using the framework and was then discussed within the team, each researcher was a native speaker of the language used during the interview. In order to increase uniformity in all cases, peer debriefing occurred before starting the interviews. The first interview from one subunit in each case was discussed by all members of the research team. The team discussed data between the members of the research team during four meetings.
In order to have a single analysis framework, a grid for the analysis of the interviews was developed based on two pilot interviews in Belgium. The grid was then sent to the five researchers conducting the interviews. The first interview in each subunit (caregiver and dependent elderly) was encoded to appraise the analysis grid validity. The analysis grid was divided into four parts: (1) description of the family, professional and living situation of the informal caregiver and the dependent elderly, (2) informal caregiver role, (3) formal services for the dependent elderly, (4) support measures for the informal caregiver. The analysis grid could evolve during the collecting of data and any changes were communicated between the researchers. A reporting scheme that included some representative quotes in their respective language was used to report the findings. After analysing the separate cases, thematic analysis was performed across cases to define domains.
The interview data was divided into four parts (1) description of the family, professional and living situation of the informal caregiver and the dependent elderly, (2) the informal caregiver role, (3) formal services for the dependent elderly, and (4) support measures for the informal caregivers.
Part 1: Description of the family, professional and living situation of the informal caregiver and the dependent elderly
Demographics of the subunits/participants
Informal caregivers demographics per case (n = 35)
Belgium (n = 15)
France (n = 5)
Netherlands (n = 5)
Germany (n = 5)
Luxembourg (n = 5)
Mean age (years)
Living/has lived with DEP
In the labour market
Dependent elderly demographics per case (n = 35)
Belgium (n = 15)
France (n = 5)
Netherlands (n = 5)
Germany (n = 5)
Luxembourg (n = 5)
Mean age (years)
Living at home
Dependent elderly demographics
Dependent elderly were over 70 (mean 85 years). The dependent person was slightly younger (66 and 69 years old) in two subunits in the Belgian case. The majority of the elderly were female, with the exception of the Luxembourg case (three of the five were male). Most caregivers were family members. Care was usually provided by the spouse or by a child (sometimes child-in-law). The informal caregivers shared the house with the partner or wife/husband in subunits where the elderly was married and not institutionalized. In the Netherlands, Germany, Belgium and France, a mix of co-residence status with child (or in-law) caregivers was present.
The average age of the caregivers (spouse/partner relationship with the dependent older person) was 61 years. The mean age for non-spouse caregivers was 53 years. Regarding active job occupation the sample was heterogeneous, except for Luxembourg where the sample was older and all caregivers were retired. In the Netherlands, Germany, Wallonia and France, a mix of co-residence status with child(-in-law) caregivers was present. In Belgium (French speaking part) all daughters providing care lived-in with the dependent older person.
Part 2: The informal caregiver role
Caregivers played an essential role in arranging and managing the continuity of care of the dependent elderly. In all cases, caregivers to some extent provide personal care or support at home and ensure the continuity of care through coordination of formal care. From our data, it seemed that the caregivers in all cases preferred to do as much as possible without professional help. The caregiver was often the key person to provide care and coordination for the dependent elderly.
Q1: “I know that there is new arrangement for informal caregivers. But I haven’t looked any further into it. It’s not of much importance. We did look for support with devices, that sort of thing you follow up.” (caregiver the Netherlands).
Q2: “Providing informal care and making decisions are done in good harmony with her (dependent elderly). She (elderly person) was able to indicate to us clearly what she expected from us and what she didn’t. For example, bathing in the shower or bath was left to a professional caregiver. The choices were made together with her.” (caregiver Belgium).
Q3: “So I told my brothers, you have to go and check on mother one or two extra times, as we’re going on holiday. And that’s no problem.” (caregiver Netherlands).
Q4: “This year I went on holiday to the seaside with my child. I was making myself comfortable when I got a call from the social worker to tell me she could not provide care during the three days a week while I was at the sea … She had a problem with her staff … I thought I was going to die, and then, no humanity, no one apologizes …" (caregiver Belgium).
Q5: “Mom has always been a woman who was very independent. Every day she could go out whenever she wanted to. Now everything has changed, she is the caregiver, and has all the weight on her shoulders. She does not know when she can go out. She needs to look after him all the time, she cannot lock him (her husband) up in the house and go out …" (caregiver Belgium).
Part 3: Formal services for the dependent elderly
Most caregivers are informed about the formal services available to the dependent elderly. Information (e.g. home care and nursing care) is provided by the general practioner or the social assistant at discharge from hospital.
In the Netherlands, Luxembourg, Germany and France, care for the dependent elderly, and information about this care, was offered in a care package by health insurance or by the municipality. In contrast to Belgium where services for the dependent elderly and also information on these services were divided between several sectors of the social security system. Finding information seemed to be more difficult in Belgium.
Q6: “It all went extremely fast, there was a man from Assurance Dependence that came to assess the situation and the degree of burden, then the caregiver only had to sign. The next month the money was there.” (caregiver Luxembourg).
Part 4: Support measures for informal caregivers
Q7: "They live relatively well, they are not in need of for more help. But if you have to use more nursing assistance, I do not think is it possible … From the care insurance, he receives 343 euros, it helps to cover medical expenses. He already needs almost 300 euros for drugs per month. Also 300 euros per month for the day centre, and he only has a pension of 900 euros, so if he needs nursing help or if he wants to give a contribution to the informal caregivers, he has nothing to eat …" (caregiver Belgium).
Q8: “It's a bit like a fixed schedule, but you could be flexible with it. They saw to it at work that I was able to switch shifts with colleagues. They are very nice colleagues, they have taken my situation into account.” (caregiver Belgium).
Flexible work arrangements and leave policies are used to support the caregiver in looking after the dependent elderly and to sustain their role and thus the continuity of care for the elderly.
Q9: “I find it important to home-care. And you should not be paid. But I can understand if you do not work or do not have work because you home-care, then it's another matter.” (caregiver Netherlands)
Q10: “The amount is not the same everywhere. In one place they get 50 euros, 20 euros at the other. That's a big difference. And here they get nothing. I (DEP) asked, can’t they then have euros for a bunch of flowers? I think that we need to appreciate them and volunteering is not appreciated, it's because you’re happy to do it. You won’t get anything for doing it.” (caregiver Flanders)
Q11: “Well, an informal care allowance, two hundred euros per year, we just received that. We went out for dinner with the four of us with that money; my brother, his wife and us two. Because they also help our mother.” (caregiver Netherlands).
Policy measures, such as respite care and psychosocial support, were seldom used or known.
Informal caregivers reported that when respite care alternatives were available, they were seldom adapted to the needs or preferences of the informal caregiver and/or the dependent older person. For other informal caregivers and dependent older people, it appeared unacceptable to use these types of services. The reasons given were a lack of trust and the strong relationship between the informal caregiver and the dependent older person.
Q12: “The amount that you get every month from the care allowance, you can use for groceries and then it’s gone, with that small amount you cannot cover all financial things. If you need to look for help everywhere and everything has to be paid for, then you need to have some savings.” (Caregiver Belgium)
Q13: “He is going to a day center, two times a week. (…). During those two days, I can recover a bit, I try to recover from my busy week…” (caregiver Belgium, Brussels)
Q14: “I told the doctor that my husband should go to a day clinic for rehabilitation. They picked him up and he would see somebody else than always me. Then I can do other things and have some relief. I will get a piece of paper and then it will be possible.” (caregiver Germany)
Q15: “Dependent person goes to a day care centre twice a week. They do handicraft, crosswords, cooking (like cookies for Christmas). Dependent person stays there from 9 h30 to 17 h00. Caregiver drives dependent person to the centre, there is also a bus but it never was punctual.” (caregiver Luxembourg)
The case-context influenced the extent to which caregivers used informal support measures. The way information was provided also influenced the use of the support measures and this varied between the different cases. If the caregivers were provided with more information, this resulted in an increased use of formal and informal support measures.
Q16: “I didn’t even know that these support measures exist. I should have known about their existence before.” (caregiver Belgium, French speaking).
Q17: “It's really looking for things and calling around, getting to know/ finding out. And then you see peers left and right from you who experience the same problems, the same situation and you work it out. You really have to persevere and repeatedly fil out forms.” (caregiver Belgium, Dutch speaking).
Q18: “The nursing help is part of your insurance package. And the cleaning, that depends on your income and you pay a monthly contribution. And the rest is paid by the council (ACTD). You must at least pay a contribution.” (caregiver The Netherlands).
Q19: “The “Assurance Dépendance” gave us about €1000 a month because I was taking care of him, that was when (organisation name) came twice a day. Since he is partly paralysed they come 4 times a day, and we still get about €500 each month.” (caregiver Luxembourg).
This also means that the informal caregiver or the dependent elderly does not need to look for information themselves, as it has been provided to them in a proactive way. This was provided by health and social care professionals or insurances, which is in contrast with the Belgian case, where information was not easily available and not offered uniformly and ad hoc.
All caregivers, and especially those who lack information, stressed the necessity of being proactively informed instead of having to search for it themselves. Belgian subunits mentioned that often the information was provided by the social assistant at discharge from hospital, too late in the care process.
This study explored the experiences with policy measures of informal caregivers in five European countries: Belgium and four other European countries (France, Germany, The Netherlands, and Luxembourg). The lessons learned through the eyes of the informal caregivers provide important insights on (1) the accessibility and the use of different policy measures and (2) how the continuity of care for the dependent elderly at home is coordinated and organised.
The accessibility and the use of support measures
Primary care organisation was unique in the described cases. The different countries in this study had complex and varied policy measures. Therefore results emphasise the differentness of the environment in which support policies for caregivers are implemented and delivered. The use of support measures depends on whether sufficient and timely-appropriate information is communicated to the end users.
Earlier research shows similar results [7, 14, 15]. The use of policy measures (formal care) differs between European countries, but when allocating this formal care every country focuses on older persons living alone or on the most care-dependent persons . Literature describes that the majority of these elderly persons and their carers do not seem to seek for help for their unmet needs . The complexity of finding information is one of this reasons.
Hence, the results from the case studies are in line with what was already reported in literature: caregivers only look for information on what is available to them very late in the care process, and in extreme situations, informal caregivers often seek for information on support for themselves.
As a solution for the problems described, the use of integrated care packages is recommended. Integrated care packages by health insurance or by the municipality (as for instance in the cases of France and the Netherlands) facilitate transfer of knowledge on informal support measures to the end users which can increase the use. In the Belgian case, fragmentation of information about policy measures is apparent. Caregivers, who are engaged in a complex caring micro-environment, are obliged to search for information themselves. A mixture of information is available to adults with chronic diseases. Because of the different health care professionals connected to these patients, this information is fragmented and the search for information is very difficult .
Organisation and coordination of continuity of care
From our data it shows that most informal caregivers organize the coordination of care themselves to ensure continuity of care for their elderly. Formal support measures help the caregiver to offer support to the elderly person. Informal caregivers often experience difficulties in ensuring the continuity of care. Often this continuity is a fragile equilibrium, due to the high age of the caregiver or the combination of working and caring for their family member.
As we know, risk factors for caregiver burden are frequently described in literature [17, 18]. Caregiver burden can threaten the coordination of care for the elderly person. One of the risk factors is the lack of information and support for the informal caregiver.
Therefore, the provision of information and the support in finding custom-fit information for the caregiver has to improve. Information about policy measures should be available to support the caregiver, in order to keep the dependent elderly at home longer. Our study showed that integrated care packages, where information is tailored, are effective in the support for the caregiver . Not only were the accessibility and the use of the support measures increased, but the caregivers also experienced a lot of support when information was provided early in the care process.
Care packages, where a case manager acts as a central contact person and offers information “just in time”, can be a valuable support for the informal caregiver in specific situations. The GP and/ or other health care professionals (e.g. nurse, social assistant, or pharmacist) can fulfil this role of case manager. The case manager must guide the informal caregivers and their dependent elderly person. They need to maintain an overview of the situation of the caregiver, provide information, and look whether the situation is still bearable and doable for the caregiver.
Wagner et al. identified the role of case management to provide this information . Such case management in the community facilitates optimal chronic care management by enhancing the coordination of home care providers from the health and social care sector.
Strengths and limitations
Even though a uniform but heterogeneous blueprint for the recruitment of participants in the different cases was designed, problems with recruitment in the different cases did not allow the researchers to completely follow this initial strategy. This was particularly the case in Luxembourg, where only retired caregivers could be recruited.
Since participation was voluntary a selection bias is possible, but it is unclear whether this influences the perception of caregivers to support measures.
The intention was to interview dependent elderly and informal caregivers in pairs (subunits). In more than a half of the cases, caregivers and their dependent elderly person were actually both interviewed. The interview with the dependent elderly was done supplementary, after the interview with the caregiver. These interviews did not bring new insights, but rather recapitulated the data given by the informal caregiver and confirmed the caregivers’ experiences, regarding the use of policy measures and the need for support.
A selected number of individuals were interviewed in the different countries. Their specific experiences cannot reflect the overall picture of informal care in each country; but nevertheless the results allow the researcher to test whether the first explanations emerging from one case are robust enough when applied to other cases. In this way, within the aim of the research, an overall description of the caregivers’ experiences brought valuable insights. Based on these experiences, we can learn about the factors that influence the uptake and impact of the different policies.
The informal caregiver plays an essential role in the long term care. Support to informal caregivers is a complex issue. Each caregiving situation is unique. Therefore, a single support strategy cannot benefit all informal caregivers and tailored measures are necessary. Measures to support informal caregivers are scattered in different sectors of the social security system. Not surprisingly, developing a coherent policy to support informal caregivers is not a simple task and a forward-looking approach is required.
To support the informal caregiver, who is the best person to monitor the progression of the patient’s problem, fragmentation of information regarding supportive policy measures is an issue of concern. Fragmentation of the system is more prominent in Belgium compared with other countries and Belgian informal caregivers find it difficult to navigate through the system. In the other countries, when home care is provided via a care package, information seems to be given more timely, and/or there is a regular assessment of the changing needs of the dependent elderly.
ADL, activities of daily living; DEP, Dependent elderly; GP, General practitioners; OECD, Organisation for economic cooperation and development; UZA-UA, University Hospital of Antwerp, University of Antwerp
This research was conducted at the department of primary and interdisciplinary care of the University of Antwerp and the department of health sciences Université Catholique de Louvain. We thank all experts for their willingness to share knowledge and information during the interviews. Special thanks to the fieldworkers of Yellow windows for making the interviews in the German and the Luxembourg cases.
We also thank Frank Hulstaert for reviewing the results and improving the initial analysis grid.
This research received a grant from the Federal Knowledge Centre for Health Care (KCE).
Availability of data and materials
Dataset and materials are available at the institution who provided funding: The Federal Knowledge Centre for Health Care (KCE).
The authors WE, AS, SO, MJ, RR, FPMI contributed equally to the study design, data collection and data analysis. WE wrote the draft of the paper. BH developed the initial study design and was involved in the initial analysis steps. Four other authors (AS, RR, FPMI, TD) reviewed and approved the final version of the paper. All authors (WE, AS, FPMI, SO, MJ, BH, DT and RR) read and approved the final manuscript.
The authors declare that they have no competing interests.
Consent for publication
There are no names of individuals described in the article or shown on photographs.
The Committee for Medical Ethics UZA-UA approved this project (B300201419841). All participants signed informed consent and agreed upon audio taping and subsequent analysis of the interviews. The informed consent for participants was provided in their own language, confidentiality is guaranteed.
Ethical approval and consent to participate
The Committee for Medical Ethics UZA-UA approved this project (B300201419841). All participants signed informed consent and agreed upon audio taping and subsequent analysis of the interviews.
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