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Determinants of the need for respite according to the characteristics of informal carers of elderly people at home: results from the 2015 French national survey

BMC Health Services Research volume 21, Article number: 995 (2021) Cite this article

Abstract

Background

The demographic and social changes associated with population aging and the increasing incidence of chronic diseases underscore the importance of the role of informal carers. The number of informal carers is increasing and negative consequences associated with providing care, such as burnout, are known. However the influence of socioeconomic and psychological factors on the need for respite have not been well characterized to date. Informal care represents an essential component of health care systems and long-term care. The purpose of this study was to shed light on how the characteristics of informal carers affect the need for respite.

Methods

We used data from a nationally representative survey, Capacités Aides et Resources des Seniors (CARE - ménage), collected in 2015 by the National Institute for Statistics and Economic Studies (INSEE) and the Directorate for Research, Studies, Assessment and Statistics (DREES). The determinants of the need for respite among the characteristics of informal caregivers were explored using a probit model. To handle missing data, sensitivity analyses were performed using multiple imputations.

Results

Our study included N = 4033 dyads of informal carers and care recipients. The mean age was 61 for carers. The majority of carers were female, married, the child of the care recipient. Almost 27% reported a need for respite. A worse health status, feeling of loneliness, having a lack of time for oneself and needing to provide more than 30 h of care per month very significantly increased the need for respite irrespective of whether or not the carer lived with the care recipient (p < 0.01). Providing care to other persons was likely to induce a greater need for respite (p < 0.01). Cohabitation of the informal carer and the care recipient was likely to increase the need for respite (p < 0.05). Conversely, however, being closely acquainted with the care recipient showed a reduced need for respite in comparison with that of carers who are married to their care recipient (p < 0.05).

Conclusions

These findings provide useful information for policymakers, physicians and other health professionals for reducing carers’ risk of exhaustion and burnout and for referring carers to the relevant service, e.g. psychological intervention, respite care support, training support and education support.

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Introduction

Informal carers represent unpaid persons such as family members, neighbours, close acquaintances or other significant individuals who provide daily assistance to a family member or dependent elderly person who cannot care for himself or herself. Informal care represents an essential component of health care systems and long-term care, and a significant proportion of the population dedicates a particular part of their time to providing care to care recipients (parents, children or spouses). In France, almost 3.9 million informal carers of older adults (aged 60 or more) living at home provide regular care due to age or a health problem [1]. Informal carers have a ubiquitous and very substantial presence throughout the world. International Alliance of Carer Organizations (IACO) provided the following figures of informal carers internationally: 43.5 million in the USA (2015), 8.1 million in Canada (2012), 6.5 million in the UK (2011) and more than 8 million people in France (2019) [2]. Given the situation marked by the increase in expenditure for the health system in the majority of western countries due to ageing populations, the demand for informal care is likely to increase over the coming decades [3].

In France, according to the projections of the National Institute for Statistics and Economic Studies (INSEE), the proportion of people aged over 60 years will increase sharply until 2035 [4]. This sharp increase will be transitory and will correspond to the “baby-boomer” generation ageing. In 2015, 3 million people aged 60 or older living at home reported being regularly assisted with activities of daily living because of their age or a health condition [5]. Simultaneously, among carers, the number of individuals likely to be able and willing to provide care has probably reduced as a result of a range of socio-cultural trends, such as demographic changes, the increase of female participation in the labour force, cultural values and changes to family structures [6,7,8,9,10]. Therefore, demographic and social changes associated with population ageing have resulted in much debate regarding how care is provided to the elderly and/or people with disabilities [11, 12].

Informal carers play a strategic role in the daily activities of their dependent care recipients. Although some carers view care provision as propitious and a generator of positive utility, it can be seen that for some informal carers, care provision has lost these qualities [13,14,15,16]. When this happens, providing informal care produces negative consequences for carers as a result of a high risk of exhaustion (strain/burnout) if carers do not receive external assistance. Generally, informal care negatively affects the carer’s work productivity [17,18,19,20,21,22] and their health [23,24,25,26,27]. Despite rapid impairments being observed in situations involving an overwhelming burden, there is more concern regarding the gradual worsening of carers’ quality of life [28,29,30]. In light of this, it is clear that many carers need support services to improve their health and quality of life [31]. This need is substantial for carers with a high risk of exhaustion, who remain without support at their disposal. As a result, the consequential situation may potentially lead to a “double boomerang” effect of one care recipient receiving informal care leading to two dependent individuals using formal care [25].

Assuming that carers occupy an ambiguous position within the social care system [32], the majority of services are predominantly structured around recipients. Nevertheless, many support services dedicated to carers have been developed across countries [33, 34], particularly respite care [35, 36]. Respite care generally provides temporary relief to informal carers from continuing caregiving responsibilities and restores resilience and improves the quality of life and well-being of carers [37]. The need and the claims for respite assistance are priority considerations in the debate regarding the prevention of frailty of the carers. Despite the rapid intensification of focused carer support programmes in recent decades, due to the increasing number of carers over this period [38], there are still many who become overwhelmed with the burden of providing informal care. Several studies have found inadequacy of services on offer, ambivalence in carers’ attitudes, a lack of available time [39] and a feeling of guilt when carers request assistance [40, 41]. Given the potential benefit of respite and the gradual recognition of this fact by health professional and policymakers, the assessment of respite programmes establishes that the timing at which services were offered and then subsequently used by carers was deemed both “too late” [42] and “too little” [43], even for overburdened carers [44]. Nevertheless, despite the low use of respite, many carers reported a significant need in general [45, 46] and particularly for day care [45, 47].

Regarding this significant public health issue, it is essential to identify and understand factors influencing the need for respite among carers, such health status [48]. Note that, the need for respite does not necessarily equal the need for respite care [49].

In this paper, we investigated the need for respite related to the characteristics of carers and recipients. Our paper constitutes an important contribution to the field because it provides a first exploratory analysis taking advantage of the large and recent French national data set and a broad pattern of explanatory variables.

Material and methods

Data source

Data used in our study stemmed from the Capacités Aides et Resources des Seniors (CARE ménage) [50], a nationally representative survey carried out in France’s metropolitan areas in 2015 by the National Institute for Statistics and Economic Studies (INSEE) and the Directorate for Research, Studies, Assessment and Statistics (DREES). We used both the data of carers [51] and care recipients [52]. The carer survey (CARE ménage - Volet “Aidants”) was a supplementary section of CARE ménage - Volet “Senior”, collected in 2015. The survey protocol favoured face-to-face data collection. The survey was conducted by phone when face-to-face contact was not possible.

The CARE survey focuses on the living conditions of people aged 60 or over living at home, their difficulties in carrying out the activities of daily living and the assistance they receive. About 15,000 older people were interviewed, including healthy people. A total of 10,628 care recipients among the elderly were included in the study. Informal carers represented 6201 (16 years of age or older) of those declared by recipients.

Regarding the need for respite (dependent variable), the carer had to answer “yes”/“no” to the following question: “Do you need respite? / Do you need more respite for longer periods of time?”. The characteristics, technical details and a full description of the CARE survey are available in the technical notice of the DREES website [53, 54].

Methods

We used descriptive statistics to provide details on the study sample, including informal carers and care recipients. We used multivariate regressions to explore variables influencing the need for respite. We assumed that the need for respite depends on the health status, living arrangement and various socio-economic characteristics. Hence, we selected a number of variables based on scientific knowledge and existing literature [24, 25, 48, 55,56,57].

We modelled the Need for respitei (dichotomous dependent variable) through a probit model (primary analysis). The econometric specification of the Need for respitei in was formulated as follows:

$$ Need\ {for\ respite}_i={\beta}_0+{\beta}_1{H}_i+{\beta}_k{X}_i+{\varepsilon}_i $$
(1)

Where Hi stands for the health status of the carers. Xi represents explanatory variables related to socio-economic dimensions of the characteristics of informal carers and recipients. βk represents the parameters to be estimated and εi represents the error term. The dependent variable Need for respitei was defined as:

$$ Need\ {for\ respite}_i=\left\{\begin{array}{c}1\ if\ Need\ {for\ respite}_i>0\\ {}0\ if\ Need\ {for\ respite}_i\le 0\end{array}\right. $$
(2)

We pay particular attention to the interest variable “health status”. It referred to a set of levels describing different carer health statuses: very good; good; fair; bad; very bad. We assumed that a worse health status induces more need for respite. The other characteristics included in the analyses were: (i) length of time for care provision (in year), income, marital status, filiation, care for other persons, cohabitation, replacement in case of unavailability, age, gender, duration of care provision (in hour per month), use of support group, and of training for informal carers; (ii) and number of chronic diseases, use of formal care, restrictions for activities of daily living (ADL) and Instrumental activities of daily living (IADL), Mental health index (MHI5) for care recipients. After we checked no high correlation was identified between included predictors, a logistic regression was performed with the need for respite as dependent variables.

Furthermore, we performed a secondary analysis for robustness checks by using a composite index as a proxy of the health status (interest variable) of the informal carers. In order to avoid problems of multicollinearity, we deemed appropriate to analyse them separately. Therefore, we built a Health Status Composite Index (HSCI) capturing the level of vulnerability related to negative consequences of the carers’ health states [58], considered to be the interest variable. In keeping with the literature, the following as indicators were retained: stress, anxiety, back problems, physical exhaustion, sleep disorders. The HSCI, which reflects a linear combination of such indicators, can also be assumed as a subjective burden of informal care. These selected variables were turned into the HSCI by computing the Principal Components Analysis (PCA), which amounts to a substantial contribution to the main component. The PCA was related to the strain of carers (this comprised high values for the most affected), with cumulative inertia in the first axis. We used Varimax rotation to change the PCA coordinates that maximise the variances of the sum of the squared loadings. Thus, all of the coefficients of each component became either large or close to zero, with few intermediate values. The goal was to capture the association of each variable with at the most one factor. As we only considered the first factor/axis, the composite index provided substantial information regarding retained variables (stress, anxiety, back problems, physical exhaustion, sleep disorders). Finally, the econometric specification of the secondary analysis of the Need for respitei was determined as follows:

$$ {Need}_i={\beta}_0+{\beta}_1{HSCI}_i+{\beta}_k{X}_i+{\varepsilon}_i $$
(3)

Where HSCIi represents the Health Status Composite Index capturing the carer vulnerability.

All variables and parameters remained unchanged compared with primary analysis, except for the variable “health status” which was replaced by the “HSCI” variable.

To deal with the problem of multicollinearity, overfitting and reduce the number of predictors, we performed a stepwise backward selection with p < 0.05 in order to determine which among socio-demographic characteristics significantly affect the need for respite. We have followed the recommendations of MA Babyak [59]. Only predictors with p-value < 0.05 were included in the multivariate analysis after the stepwise backward selection [60].

To handle missing data in primary and secondary analyses, sensitivity analyses were performed using multiple imputations (m = 10 imputations) with chained equations [61, 62]. The data after multiple imputations replaced the missing observations on the covariates of the full model. The results of multiple imputations were provided using all covariates.

The level of significance of 0.05 was retained. We carried out all the statistical analyses with STATA SE-64 Statistical software 16 (StataCorp. LP, College Station, TX, USA).

Results

Descriptive statistics

Figure 1 describes the entire study population. The CARE survey contains 42,688 individuals, among which N = 6201 were informal carers and N = 10,628 were care recipients. Carers’ data were then matched with recipients’ data to provide a dyadic sample study. Of those, only N = 5095 informal carers reported the need for respite (yes/no). Finally, our study included N = 4033 informal carer-care recipient dyads with the full complete case. Data was missing in N = 2168 dyads (i.e. 6201 - 4033) and calculated with imputations.

Fig. 1
figure 1

Study population

Full size image

Table 1 provides details of the characteristics of informal carers and care recipients for the entire included population and for informal carers who did and did not need respite. Of 4033 informal carers, almost 62% reported a health status of “very good” or “good”. Almost 66% of carers were married. The mean age of carers was 61 years (SD ± 14) with a range of 18–96. Female carers accounted for 61%. Almost 41% of carers lived in cohabitation. The majority of carers (54%) were offspring of those for whom they were caring, 28% partner by marriage, 13% a family member and 5% a close acquaintance. Almost 77% reported the possibility of replacement in case of unavailability. Almost 58% of carers reported a length of time for care provision greater than 5 years. Informal carers who provided care for less than 30 h per month represented 45%. Regarding the need/use for support services, 27% of informal carers needed respite while 11% used training services and 4% support groups.

Table 1 Characteristics of informal carers and care recipients
Full size table

Regarding care recipients, the majority (85%) reported quite bad health status and 68% were female. The mean age was 81 years (SD ± 9) with a range of 60–107 and 67% were suffering from more than one chronic disease. Almost 20% of recipients were assisted for at least one ADL, whereas 68% of recipients were assisted for IADL. A total of 35% care recipients received formal care.

Econometric modelling

Primary analysis

Table 2 reports the results of the econometric modelling for the primary analysis. We reported the model with complete cases (1), after stepwise backward selection (2) and with multiple imputations (3). Our findings show that the poorest health status for informal carers significantly increased the need for respite (p < 0.05). The need for respite was significantly reduced for close acquaintances compared to partners by marriage (p < 0.05). Providing care to other persons was likely to induce a greater need for respite (p < 0.01). The cohabitation of the informal carer and the care recipient was likely to increase the need for respite (p < 0.05). Our results also indicate that the feeling of loneliness (p < 0.001), the lack of time (p < 0.001), the duration (in hour per month) for care provision (p < 0.001), the use of training (p < 0.001), and the use of support groups (p < 0.01) significantly increased the need for respite. Our results indicated that age was not likely to affect carers’ need for respite at 5% significance level.

Table 2 Primary analysis - Determinants of the need for the respite of informal carers
Full size table

There was a higher need for respite for carers with the raise of the duration of care provided to recipients (p < 0.001). Figure 2 illustrates this finding.

Fig. 2
figure 2

Probability of the need for respite according to the duration that carers had been providing support to care recipients

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Finally, regarding the characteristics of care recipients, carers’ need for respite increases with the worsening of the health status of the recipients (p < 0.05). Additionally, care recipients suffering from more than one chronic disease were more likely to create a higher need for respite (p < 0.05).

Secondary analysis

The results of the secondary analysis are reported in the appendix. The higher the strain (HSCI), the higher the need for respite (p < 0.001). As in the primary analysis, the other explanatory variables were also significant in secondary analysis. The filiation variable was significant, with a positive effect for children and family members for carers (p < 0.05). At the same time, the close acquaintance was less likely to need respite (p < 0.05). The more carers reported the problem of lack of time (p < 0.001), and the feeling of loneliness (p < 0.001), the higher the probability of the need for respite. The care duration (p < 0.001), the use of training (p < 0.001), and the use of support group (p < 0.05) positively affected the need for respite. The chronic condition of care recipients significantly increased the need for respite (p < 0.05).

Discussion

This study is based on a very recent nationwide database CARE, collected in 2015. From this point of view, it brings new and additional information to the published work of this relationship given the steady increase in the number of old-aged people and carers and the lack of quantitative research into the determinants of the need for respite in France [25, 44, 48, 56, 63].

In this study, we used two different factors that relate to health: the health status of carers; and a measure of health status through a composite index (HSCI). We did this on purpose because these measures differ both in content and in measurement and focus on different but complementary aspects of health. The rationale in the realization of two separated models or analysis (primary/secondary) is particularly avoiding the problem of multicollinearity. Econometric modelling provides the finding that the health of carers is one of the most important determinants of the need for respite. The results of both analyses were relevant and quite similar in the sense that health status and HSCI turn out to be significant and had the same expected positive effect in explaining the need for respite. Thus, when informal carers experience poor health or strain, the need for respite increased. This finding could be explained by the fact that the negative consequences of informal care and its emotional impact widely affect carers’ health [1]. However, one should be cautious with international comparisons of the results, as research showed that cultural values might vary considerably within and between countries.

Nevertheless, regardless of the cultural values or living status of carers, the association between the health status of carers and the need for respite seems evident and intuitive. Our findings chime with those of Gervès-Pinquié et al. (2014), who found that the need for respite was associated with the health of carers in France. Some studies show that the need for respite depends not only on the health of carers and recipients but also on other carers characteristics. These findings accord with those reported in the Netherlands using data collected among Dutch informal carers (respectively N = 950 and N = 273) [25, 56] and in the U.S. based on community and informal carers survey data (N = 1058) [48].

Our findings also highlight that the living arrangement of carers with care recipients could significantly increase the probability of the need for respite. According to Schulz and Beach, certain forms of living arrangement increased the need for respite by 20% [30]. However, the assumption that carers living with their care recipients experience a considerable burden and require more respite has been confirmed empirically [57].

Carers not living with their recipient may have experienced less burden and less need, for instance. This result could be due to less informal care, considering the median volume of assistance provided by cohabiting carers is twice as high as that of non-cohabiting carers [64, 65]. However, in the multivariate analysis, after adjustment for the duration of informal support, the effect of cohabitation remains an independent factor. In other words, the presence around the immediate environment with the recipient could represent a mental burden for the carer. There is a lack of various respite interventions in the sense that some carers are not always aware of the availability of services. It sometimes appears that carers choose not to use support partially as a result of having difficulty accessing and using it and partially as a result of a lack of information [66,67,68].

Given the negative effect of the length of time providing care on the need for respite, it clearly appears that, in the case of a lack of respite assistance, informal carers, particularly those cohabiting with care recipients, have a sense of being stuck in a “trap” or they no longer need support. Therefore, it could not be at all surprising that some carers reported having renounced the need for respite mainly expressed by the feeling of reluctance [69]. Nonetheless, there is still a need for empirical evidence to support the assumption of the length of time providing care. Mostly, the feeling of guilt could discourage family members who are providing care from asking for in-home support for a relative [41]. Conversely, the duration for caregiving may likely increase the need for respite. This result is quite intuitive in the sense that the volume of informal care could create a greater burden for carers, independently of their living status [70].

Moreover, considering the intergenerational relationship between informal carers and recipients, the situation is complicated because some children are generally not willing to provide care to old-aged dependants, even though they represent the majority of informal carers [64, 71]. At the same time, the majority of old-aged dependants need assistance with daily activities [72]. In addition to this, the lack of time and the feeling of loneliness also determine the need for respite. Once again, this finding could be explained by a reluctance to place their care recipient in a support service in order to spend some time away [69].

Importantly, it has been shown that psychological, emotional responses to chronic diseases and illness of care recipients may sometimes be managed very poorly by informal care providers. This could reflect on carers the problem of the lack of training and awareness among those assuming a caregiving role, but also the fact that cultural values may differently affect informal carers.

Therefore, if policymakers want to rely on informal care as an essential input in health care in long-term care, they should first keep a close watch on the human capital, particularly on carers’ health [73, 74]. Following this, policymakers should identify strained carers at risk with high volume care through supervised learning to prevent carer exhaustion [75]. Since the French health system cannot necessarily accommodate all formal and informal costs related to carer and recipient health, there is a need for tailor-made respite, psychological and training/support programmes based on carers’ preferences. However, mixed evidence of the effectiveness of existing interventions should assist health policymakers [76,77,78,79]. Additionally, we find that the majority of informal carers (73%) who don’t need respite are less affected by the burden of care, compared to those who need respite. From this point, health policymakers could nationally prioritise the implementation of various support program to alleviate the burden of carers with a high volume of care when assisting older persons living with chronic afflictions. In all cases, it is important to prevent the high risk of exhaustion due to caregiving which could generate depression, anxiety, and/or other diseases. This study helped to better characterised the carer situation and to focus on major factors associated with the increasing need for respite for informal carers and to identify high risk groups of informal caregivers. A short questionnaire could be added, for example, in the framework of care recipient consultation and/or hospitalisation in order to assess if a carer is at high risk. If it is determined that they are at risk and if necessary, health screening, educational program or personalised training could be offered to the carer in order to protect carers’ health as far as possible and avoid the need for respite care. Our results could also lead to the implementation of a more personalised support plan for family members [80]. Further development could be based on data mining method applications [81].

Some limitations were identified in our paper. First, there is no denying that econometric modelling gives rise to the endogeneity problem for at least two primary sources. One possible source of endogeneity is the two-way (reverse) causality between the need for respite and the health status. Another possibility is the unobserved individual heterogeneity. Informal carers can differently report their experiences of strain because of higher levels of impairment. As a result, some exogenous factors such as age, relationship and/or gender may induce informal carers to provide incorrect estimates of the negative impact of care. Second, the dependent variable reflects a dichotomous measure (“yes” or “no”) of the need for respite. It has not been possible to assess the intensity on the preferences of carers (“never” or “sometimes” or “more often”). Third, future studies will want to analyse the demand for various supplies of support (respite) services and access how the characteristics of each carer enable or limit the preferences of carers. The utility function or behavioural model of informal carers towards the need for respite should be assessed in further investigations.

Conclusions

Our study consists of an analysis of the data of the National French CARE survey, conducted in 2015. We show that the need for respite varies according to the characteristics of informal carers, as well as care recipients’ factors. Health status, feeling of loneliness, lack of time, care duration more than 30 h per month, use of training for informal carers and the number of chronic diseases of care recipients were the most significant characteristics impacting on the need for respite. This study has important health policy implications for the current ageing population crisis in the most OECD countries to prevent the high risk of exhaustion. A prioritisation scheme for policymakers could consist of conducting prevention policies to identify at-risk carers. Practically, the challenge for policymakers, physicians and other health professionals is to refer to the right service, e.g. psychological interventions, respite care support, training support, education support. Dealing with the dyad’s quality of life, innovative interventions that aimed to provide support to carers and/or carers’ family members have to be developed. However, there is a need for more economic evaluations of respite interventions for carers to assist policymakers in prioritising carers support programmes.

Availability of data and materials

The data that support the findings of this study are available at in the website of the French National Institute for Statistics and Economic Studies (INSEE) and the Directorate for Research, Studies, Assessment and Statistics (DREES - French Ministry of Health): (https://drees.solidarites-sante.gouv.fr/etudes-et-statistiques/open-data/personnes-agees/article/les-enquetes-capacites-aides-et-ressources-des-seniors-care).

Abbreviations

ADL:

Activities of daily living

IADL:

Instrumental activities of daily living

CARE:

Capacités aides et ressources des seniors

DREES:

Directorate for research, studies, assessment and statistics

HSCI:

Health status composite index

IACO:

International alliance of carer organizations

INSEE:

National institute for statistics and economic studies

MHI5:

Mental health index

OECD:

Organisation for economic co-operation and development

PCA:

Principal components analysis

SD:

Standard deviation

References

  1. Besnard X, Brunel M, Couvert N, Roy D. Les proches aidants des seniors et leur ressenti sur l’aide apportée. Résultats des enquêtes «CARE» auprès des aidants (2015–2016) 2019.

  2. IACO. The global state of care. 2018.

  3. Zigante V. Informal care in Europe. Exploring Formalisation, Availability and Quality, EC 2018.

  4. Blanpain N, Chardon O. Projections de population à l’horizon 2060 Un tiers de la population âgé de plus de 60 ans. Insee Première 2010.

  5. Brunel M, Latourelle J, Zakri M. Un senior à domicile sur cinq aidé régulièrement pour les tâches du quotidien 2019.

  6. Robine JM, Michel JP, Herrmann FR. Who will care for the oldest people in our ageing society? BMJ 2007;334:570–571. https://doi.org/https://doi.org/10.1136/bmj.39129.397373.BE, 7593.

  7. Geerlings SW, Pot AM, Twisk JWR, Deeg DJH. Predicting transitions in the use of informal and professional care by older adults. Ageing Soc 2005;25:111–130. https://doi.org/https://doi.org/10.1017/S0144686X04002740, 01.

  8. Van Houtven CH, Norton EC. Informal care and health care use of older adults. J Health Econ 2004;23:1159–1180. https://doi.org/https://doi.org/10.1016/j.jhealeco.2004.04.008, 6.

  9. Wiles J. Daily geographies of caregivers: mobility, routine, scale. Soc Sci Med 2003;57:1307–1325. https://doi.org/https://doi.org/10.1016/S0277-9536(02)00508-7, 7.

  10. Heath I. Long term care for older people. BMJ 2002;324:1534–1535. https://doi.org/https://doi.org/10.1136/bmj.324.7353.1534, 7353.

  11. Davin B, Paraponaris A, Verger P. Entraide formelle et informelle quelle prise en charge pour les personnes âgées dépendantes à domicile? Gerontol Soc 2009;127:49–65. https://doi.org/https://doi.org/10.3917/gs.127.0049, 4.

  12. Karlsson M, Mayhew L, Plumb R, Rickayzen B. Future costs for long-term care: cost projections for long-term care for older people in the United Kingdom. Health Policy 2006;75:187–213. https://doi.org/https://doi.org/10.1016/j.healthpol.2005.03.006, 2.

  13. Brouwer WBF, Exel NJA van, Berg B van den, Bos GAM van den, Koopmanschap MA. Process utility from providing informal care: the benefit of caring. Health Policy 2005;74:85–99. https://doi.org/https://doi.org/10.1016/J.HEALTHPOL.2004.12.008, 1.

  14. Van Exel J, Van Den Berg B, Van Den Bos T, Koopmanschap M, Brouwer W. Informal care in the Netherlands A situational sketch of informal caregivers reached via informal care Centres. 2002.

  15. Van Wijngaarden B, Schene AH, Koeter MWJ. Family caregiving in depression: impact on caregivers’ daily life, distress, and help seeking. J Affect Disord 2004;81:211–222. https://doi.org/https://doi.org/10.1016/S0165-0327(03)00168-X, 3.

  16. Hirst M. Carer distress: A prospective, population-based study. Soc Sci Med 2005;61:697–708. https://doi.org/https://doi.org/10.1016/j.socscimed.2005.01.001, 3.

  17. Chadili N, Coll-Cabarrus M, Fau-Prudhomot P, Le Jeune C, Locher F, Montéléon PY, et al. Effets de la situation d’aidant non professionnel sur le travail et la santé. Arch Des Mal Prof l’Environnement 2017;78:239–251. https://doi.org/https://doi.org/10.1016/j.admp.2016.11.007, 3.

  18. Hassink WHJ, Van den Berg B. Time-bound opportunity costs of informal care: consequences for access to professional care, caregiver support, and labour supply estimates. Soc Sci Med 2011;73:1508–1516. https://doi.org/https://doi.org/10.1016/j.socscimed.2011.08.027, 10.

  19. Li Y. The effects of formal and informal child care on the Mother’s labor supply—evidence from urban China. China Econ Rev 2017;44:227–240. https://doi.org/https://doi.org/10.1016/j.chieco.2017.04.011.

  20. Peyrache M, Ogg J. Concilier vie professionnelle et aide informelle à un parent âgéCombining professional life and support given to an ageing parent : a challenge for persons aged 50-64 in Europe. Rev Eur Sci Soc 2017;55:97–125. https://doi.org/https://doi.org/10.4000/ress.3841, 55-1.

  21. Sugawara S, Nakamura J. Can formal elderly care stimulate female labor supply? The Japanese experience. J Jpn Int Econ 2014;34:98–115. https://doi.org/https://doi.org/10.1016/j.jjie.2014.05.006.

  22. Yamada A, Sakai T. Labor supply and income reduction of middle-and old-aged people in Japan with a parent in need of long-term care. Keizai Bunseki. 2016;191:183–212.

  23. Suzuki W, Ogura S, Izumiida N. Burden of family care-givers and the rationing ing the long-term care insurance benefits of Japan. Singap Econ Rev 2008;53:121–144. https://doi.org/https://doi.org/10.1142/S0217590808002872, 01.

  24. Yuda M, Lee J. Effects of informal caregivers’ health on care recipients. Japanese Economic Review 2016;67:192–210. https://doi.org/https://doi.org/10.1111/jere.12102, 2.

  25. van Exel J, de Graaf G, Brouwer W. Give me a break!. Informal caregiver attitudes towards respite care. Health Policy 2008;88:73–87. https://doi.org/https://doi.org/10.1016/j.healthpol.2008.03.001, 1.

  26. Antoine P, Quandalle S, Christophe V. Living with a chronically ill relative: assessment of positive and negative dimensions of the experience of natural caregiver. Ann Med-Psycho (Paris) 2010;168:273–282. https://doi.org/https://doi.org/10.1016/j.amp.2007.06.012, 4.

  27. McMillan SC, Mahon M. The impact of hospice services on the quality of life of primary caregivers. Oncol Nurs Forum. 1994;21(7):1189–95.

    CAS  PubMed  Google Scholar 

  28. Stall NM, Kim SJ, Hardacre KA, Shah PS, Straus SE, Bronskill SE, et al. Association of Informal Caregiver Distress with Health Outcomes of Community-Dwelling Dementia Care Recipients: A Systematic Review. Journal of the American Geriatrics Society 2018;67:jgs.15690. https://doi.org/https://doi.org/10.1111/jgs.15690, 2019.

  29. Montgomery RJ V., Gonyea JG, Hooyman NR Caregiving and the experience of subjective and objective burden Fam Relat 1985;34:19. https://doi.org/https://doi.org/10.2307/583753, 1.

  30. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. Am Med Assoc 1999;282:2215–2219. https://doi.org/https://doi.org/10.1001/jama.282.23.2215, 23.

  31. Lopez Hartmann M, Wens J, Verhoeven V, Remmen R. The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review. Int J Integr Care 2012;12:e133. https://doi.org/https://doi.org/10.5334/ijic.845, 5.

  32. Twigg J. Models of Carers: how do social care agencies conceptualise their relationship with informal Carers? J Soc Policy 1989;18:53–66. https://doi.org/https://doi.org/10.1017/S0047279400017207, 1.

  33. Jones C, Edwards RT, Hounsome B. A systematic review of the cost-effectiveness of interventions for supporting informal caregivers of people with dementia residing in the community. Int Psychogeriatr 2012;24:6–18. https://doi.org/https://doi.org/10.1017/S1041610211001207, 1.

  34. Eurocarers. Informal carers’ skills and training-a tool for recognition and empowerment. Brusels: 2016.

  35. Maayan N, Lee H. Respite care for people with dementia and their carers (review). Cochrane Database Syst Rev 2014. https://doi.org/https://doi.org/10.1002/rr14651858.CD004396.pub3.www.cochranelibrary.com.

  36. McNally S, Ben-Shlomo Y, Newman S. The effects of respite care on informal carers’ well-being: A systematic review. Disabil Rehabil 1999;21:1–14. https://doi.org/https://doi.org/10.1080/096382899298043, 1.

  37. Fung AWT, Cheng S-T, Lai FHY. Respite Care. Encyclopedia of Gerontology and Population Aging, Cham: Springer International Publishing; 2019, p. 1–3. https://doi.org/https://doi.org/10.1007/978-3-319-69892-2_853-1.

  38. Wimo A, Gauthier S, Prince M. Global estimates of informal care. 2018.

  39. Thomas P, Hazif-Thomas C, Delagnes V, Bonduelle P, Clément J-P. La vulnérabilité de l’aidant principal des malades déments à domicile. L’étude Pixel. Psychol Neuropsychiatr Vieil. 2005;3(3):207–20.

    PubMed  Google Scholar 

  40. Ostrowski M, Mietkiewicz M-C. Du conjoint à l’aidant : l’accompagnement dans la maladie d’Alzheimer. Bull Psychol 2013;Numéro 525:195. https://doi.org/https://doi.org/10.3917/bupsy.525.0195.

  41. Pierron-Robinet G, Bonnet M, Mariage A, Puyraveau M. Les incidences du sentiment de culpabilité sur la demande d’aide de l’aidant familial. Ann Med Psychol 2018;176:170–176. https://doi.org/https://doi.org/10.1016/j.amp.2016.02.016, 2.

  42. Gottlieb BH, Johnson J. Respite programs for caregivers of persons with dementia: A review with practice implications. Aging Ment Health 2000;4:119–129. https://doi.org/https://doi.org/10.1080/13607860050008637, 2.

  43. Willemse E, Anthierens S, Farfan-Portet MI, Schmitz O, Macq J, Bastiaens H, Dilles T, Remmen R Do informal caregivers for elderly in the community use support measures? A qualitative study in five European countries. BMC Health Serv Res 2016;16. https://doi.org/https://doi.org/10.1186/s12913-016-1487-2, 1, 270.

  44. van Exel J, Morée M, Koopmanschap M, Goedheijt TS, Brouwer W. Respite care-an explorative study of demand and use in Dutch informal caregivers. Health Policy 2006;78:194–208. https://doi.org/https://doi.org/10.1016/j.healthpol.2005.11.002, 2-3.

  45. Armstrong M. Factors affecting the decision to place a relative with dementia into residential care. Nurs Stand 2000;14:33–37. https://doi.org/https://doi.org/10.7748/ns2000.01.14.16.33.c2737.

  46. Schofield H, Murphy B, Herrman HE, Bloch S, Singh BS. Carers of people aged over 50 with physical impairment, memory loss and dementia: a comparative study. Ageing Soc. 1998;18(3):355–69. https://doi.org/10.1017/S0144686X98006965.

    Article  Google Scholar 

  47. Phillipson L, Jones SC. Use of day centers for respite by help-seeking caregivers of individuals with dementia. J Gerontol Nurs 2012;38:24–34. https://doi.org/https://doi.org/10.3928/00989134-20120307-05, 4.

  48. Casado BL. Sense of need for financial support and respite services among informal caregivers of older Americans. J Hum Behav Soc Environ 2008;18:269–287. https://doi.org/https://doi.org/10.1080/10911350802427514, 3.

  49. Rao SR, Gupta M, Salins N. The concept of respite in palliative care: definitions and discussions. Curr Oncol Rep 2021;23:1–6. https://doi.org/10.1007/s11912-021-01015-z, 2.

  50. Ministère des Solidarités et de la Santé - DREES. Les enquêtes Capacités, Aides et REssources des seniors (CARE) - Ministère des Solidarités et de la Santé 2016. https://drees.solidarites-sante.gouv.fr/etudes-et-statistiques/open-data/personnes-agees/article/les-enquetes-capacites-aides-et-ressources-des-seniors-care (accessed May 26, 2020).

  51. Capacité Aides et REssources des seniors (CARE ménages) - Volet aidants. DREES - Ministère de la Santé, INSEE (producteurs), ADISP (diffuseur) 2015.

  52. Capacité Aides et REssources des seniors (CARE ménages) - Volet seniors. DREES - Ministère de la Santé, INSEE (producteurs), ADISP (diffuseur) 2015.

  53. Ministère des Solidarités et de la Santé - DREES. CARE Volet « aidants» Questionnaire. 2015.

  54. Ministère des Solidarités et de la Santé - DREES. CARE Volet « seniors » Questionnaire. 2015.

  55. Gervès-Pinquié C, Bellanger MM, Ankri J. Willingness to pay for informal care in France: the value of funding support interventions for caregivers. Heal Econ Rev 2014;4. https://doi.org/https://doi.org/10.1186/s13561-014-0034-2, 1, 34.

  56. Koopmanschap MA, Van Exel NJA, Van Den Bos GAM, Van Den Berg B, Brouwer WBF. The desire for support and respite care: preferences of Dutch informal caregivers. Health Policy 2004;68:309–320. https://doi.org/https://doi.org/10.1016/j.healthpol.2003.10.002, 3.

  57. Mello J de A, Macq J, Van Durme T, Cès S, Spruytte N, Van Audenhove C, et al. The determinants of informal caregivers’ burden in the care of frail older persons: a dynamic and role-related perspective. Aging Ment Health 2016;21:838–843. https://doi.org/https://doi.org/10.1080/13607863.2016.1168360, 8.

  58. Kumagai N. Distinct impacts of high intensity caregiving on caregivers’ mental health and continuation of caregiving. Heal Econ Rev 2017;7:15. https://doi.org/https://doi.org/10.1186/s13561-017-0151-9, 1.

  59. Babyak MA. What you see may not be what you get: a brief, nontechnical introduction to overfitting in regression-type models. Psychosom Med. 2004;66(3):411–21. https://doi.org/10.1097/01.psy.0000127692.23278.a9.

    Article  PubMed  Google Scholar 

  60. Hosmer Jr, DW, Lemeshow S, Sturdivant RX. Applied logistic regression. Vol. 398. Wiley; 2013.

  61. White IR, Royston P, Wood AM. Multiple imputation using chained equations: issues and guidance for practice. Stat Med 2011;30:377–399. https://doi.org/https://doi.org/10.1002/sim.4067, 4.

  62. Royston P, Carlin JB, White IR. Multiple imputation of missing values: new features for mim. Stata J. 2009;9(2):252–64. https://doi.org/10.1177/1536867X0900900205.

    Article  Google Scholar 

  63. Bannerot F, Leocadie M-C, Rothan-Tondeur M. Déterminants du recours au répit pour les proches aidants de malades atteints de démence. Sante Publique. 2019;31(2):277–86. https://doi.org/10.3917/spub.192.0277.

    Article  PubMed  Google Scholar 

  64. Soullier N, Weber A. L’implication de l’entourage et des professionnels auprès des personnes âgées à domicile. Etudes Résultats. 2011:1–8.

  65. Soullier N. L’aide humaine auprès des adultes à domicile : l’implication des proches et des professionnels. Etudes et Résultats, DREES 2012;827.

  66. Kosloski K, Montgomery RJV. Perceptions of respite services as predictors of utilization. Res Aging 1993;15:399–413. https://doi.org/https://doi.org/10.1177/0164027593154002, 4.

  67. Hong SI, Hasche L, Lee MJ. Service use barriers differentiating care-givers’ service use patterns. Ageing Soc 2011;31:1307–1329. https://doi.org/https://doi.org/10.1017/S0144686X10001418, 8.

  68. Potter AJ. Factors associated with caregivers’ use of support services and caregivers’ nonuse of services sought. J Aging Soc Policy 2018;30:155–172. https://doi.org/https://doi.org/10.1080/08959420.2017.1414539, 2.

  69. Coudin G. La réticence des aidants familiaux à recourir aux services gérontologiques: Une approche psychosociale. Psychol Neuropsychiatr Vieil. 2004;2(4):285–96.

    PubMed  Google Scholar 

  70. Andrieu S, Balardy L, Gillette-Guyonnet S, Bocquet H, Cantet C, Albarède JL, et al. Burden experienced by informal caregivers assisting Alzheimer’s patients in the REAL.FR study. Rev Med Interne 2003;24:351s–359s. https://doi.org/https://doi.org/10.1016/S0248-8663(03)80695-1.

  71. Pickard L. The decline of intensive intergenerational care of older people in Great Britain. Popul Trends. 1985-1995;2002:31–41.

    Google Scholar 

  72. Weber A. Des enquêtes nationales pour connaître l’aide apportée par les proches en raison d’un handicap ou d’un problème de santé. Inf Soc 2015;n° 188:42. https://doi.org/https://doi.org/10.3917/inso.188.0042.

  73. Grossman M. The demand for health: a theoretical and empirical investigation: Columbia University Press; 2017. https://doi.org/10.7312/gros17900.

  74. Becker GS. Health as human capital: synthesis and extensions. Oxf Econ Pap. 2007;59(3):379–410. https://doi.org/10.1093/oep/gpm020.

    Article  Google Scholar 

  75. Batata O, Augusto V, Xie X. Caregivers Burnout Prediction Using Supervised Learning. 2018 IEEE international conference on systems, man, and cybernetics (SMC), IEEE; 2018, p. 1749–54.

  76. Jeon Y-H, Brodaty H, Chesterson J. Respite care for caregivers and people with severe mental illness: literature review. J Adv Nurs 2005;49:297–306. https://doi.org/https://doi.org/10.1111/j.1365-2648.2004.03287.x, 3.

  77. Guets W, Al-Janabi H, Perrier L. Cost–utility analyses of interventions for informal Carers: A systematic and critical review. PharmacoEconomics 2020;38:341–356. https://doi.org/https://doi.org/10.1007/s40273-019-00874-6, 4.

  78. Courtin E, Jemiai N, Mossialos E. Mapping support policies for informal carers across the European Union. Health Policy 2014;118:84–94. https://doi.org/https://doi.org/10.1016/j.healthpol.2014.07.013, 1.

  79. Colvez A, Joël ME, Ponton-Sanchez A, Royer AC. Health status and work burden of Alzheimer patients’ informal caregivers: comparisons of five different care programs in the European Union. Health Policy 2002;60:219–233. https://doi.org/https://doi.org/10.1016/S0168-8510(01)00215-9, 3.

  80. Kokorelias KM, Gignac MAM, Naglie G, Cameron JI. Towards a universal model of family centered care: a scoping review n.d. https://doi.org/https://doi.org/10.1186/s12913-019-4394-5, 19, 1, 564.

  81. Jhang K-M, Wang W-F, Chang H-F, Chang M-C, Wu H-H. Characteristics Predicting a High Caregiver Burden in Patients with Vascular Cognitive Impairment: Using the Apriori Algorithm to Delineate the Caring Scenario 2021. https://doi.org/https://doi.org/10.2147/RMHP.S297204, Volume 14, 1335, 1351.

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Acknowledgements

The National Solidarity Fund for Autonomy supported this research project “PERRIER-AAP16-Hand7-25” through the IRESP research grants programme in 2016. The authors wish to thank the French National Institute for Statistics and Economic Studies (INSEE) and the Directorate for Research, Studies, Assessment and Statistics (DREES - French Ministry of Health) for allowing access to the survey data. The authors are grateful for the monthly invitation in attending to the CARE seminar at DREES (Paris). The authors also thank the reviewers and Magali Morelle for their valuable comments.

Funding

The National Solidarity Fund for Autonomy supported this research project “PERRIER-AAP16-Hand7–25” through the IRESP research grants programme in 2016.

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  1. Univ Lyon, Université Lumière Lyon 2, GATE UMR 5824, F-69130, Ecully, France

    Wilfried GUETS

  2. Univ Lyon, Léon Bérard Cancer Center, GATE UMR 5824, F-69008, Lyon, France

    Lionel PERRIER

  3. Human and Social Sciences Department, Léon Bérard, F-69008, Lyon, Centre, France

    Lionel PERRIER

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All authors designed the study. WG prepared and analysed the data. WG and LP reviewed the results. WG drafted the article. WG and LP reviewed and provided comments on successive drafts. All authors read and approved the final draft.

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GUETS, W., PERRIER, L. Determinants of the need for respite according to the characteristics of informal carers of elderly people at home: results from the 2015 French national survey. BMC Health Serv Res 21, 995 (2021). https://doi.org/10.1186/s12913-021-06935-x

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