Profile and needs of primary informal caregivers of older patients in Belgian geriatric day hospitals: a multicentric cross-sectional study

With the improvement of life expectancy, the world faces increasing demands for care of older persons. As other Western countries, Belgium faces increasing demands for the care of older persons due to aging of its population [1]. In January 2019, Belgium had 1.016.804 inhabitants over 75 years old, which accounted for 9% of the population (https://​statbel.​fgov.​be/​fr). The main providers of care for older people are frequently primary informal caregivers (PIC) [2‐4]. A PIC is defined as the person who most often provides care and assistance without any professional relationship with the person being cared for [5]. We know that PIC are at high risk of exhaustion, stress and adverse outcomes which can result in an undesired care breakdown for the person they care for [6, 7]. A better understanding of their needs is a priority, as defined by the World Health Organization [8]. Recent reviews showed that unmet needs of PIC have to be taken into account in a proactive approach of care planning from health care professionals, and that PIC are often not integrated enough in the health care system [9‐11]. In 2011, the Belgian Health Care Knowledge Centre analyzed thirty forms of non-pharmaceutical therapy for people with dementia. Experts applied a level IB of recommendation for multicomponent psychoeducation and psychosocial interventions that have been shown to improve PIC outcomes, like controlling stress, developing strategies for handling their relative’s behavioral problems, reducing their burden and increasing their satisfaction with life. Such interventions also reduce the risk of institutionalization, and improve mood, well-being and quality of life of PIC [12].

The outpatient care is available for geriatric patients in many European countries. In Belgium, as in other countries, older people receive regular care in geriatric day hospital (GDH), an outpatient service funded by the Federal Care Program for geriatric patients. Depending on the hospital and the country, GDH is more oriented to rehabilitation programs or to consultation and comprehensive geriatric assessment. A multidisciplinary team consisting of geriatricians, social workers or community health nurses, nurses, physiotherapists, occupational therapists as well as dieticians, speech therapists and psychologists work in collaboration with general practitioners, and home care services, aiming to provide optimal care for older people and to support them at home for as long as they wish [13, 14]. Based on our experience, despite the well-recognized critical role of social workers, GDH do not currently provide systematically social consultancy to patients, as it is the case for geriatric hospitalized patients, and PIC receive too little attention in outpatient settings [15]. A recent qualitative study in an outpatient geriatric clinic reported that PIC of older people with dementia often receive little or no help, seek information on dementia by internet, and are worried about how their poor health impair their caregiving [16]. We, therefore, aimed to better define the needs of PIC of older patients admitted to GDH, by describing their socio-demographic and psycho-social characteristics, their resources and by the analysis of factors associated with PIC psychological burden for all PIC, and for subgroups of adult children and spouses.

The content of the questionnaire was developed with a 2-step approach. First, during a workshop on PIC organized at the 2016 Annual Congress of the Belgian Society of Gerontology and Geriatrics, day-hospital care-workers with a ground expertise in the assessment of frail older people participated in focus groups, aiming to better define the profile and the needs of the PIC of geriatric outpatients and provide them support, in addition to the patient’s specific needs. Four focus groups were organized, namely: who are the PIC and what kind of help is provided by the PIC; how and how often they help, what could be the consequences of helping for PIC, and how GDH teams could support PIC. More details are available on request.

The questionnaire was in a second step completed and finalized by experts in geriatric care working in GDH, with the support of an economist researcher in Public Health specifically involved in primary services evaluation and PIC needs in Belgium, on the basis of the reports of each focus group. Several meetings were organised to choose items to be included in the questionnaire, like validated questionnaires in the literature, and other items, basing on different experts’ advice. The questionnaire should not last more than 30 min and should be comprehensible by as many people as possible. Since the study involved French-speaking GDH, the questionnaire was written in French. The questionnaire was tested by volunteer PIC in the principal investigator’s center (Erasme Hospital) prior to the beginning of the study, in order to ensure the relevance of the questions and the readability of the questionnaire. The questionnaires were distributed to all centers and were explained to at least two members of the participating centers, including the geriatrician in charge of the GDH. If needed, they were allowed to help the PIC to fill out the questionnaire, in order to ensure a maximum of questions answered.

Although our study focused only on PIC of outpatient in GDH, our findings are consistent with those of other international and Belgian studies: most PIC are women and often providing care without outside help for ADLs as well as for IADLs [1, 2, 4, 14, 20‐22], and this care has a financial cost for PIC [4, 23‐25]. We can identify from this survey the profile of the PIC in Belgium and the factors associated with caregiver’s psychological burden. One in four PIC has an income between 1000 and 1500 Euros per month, which is low compared to the standard of living in Belgium (the minimal social integration income for a single individual is 958, 91 Euros per month (https://​www.​mi-is.​be/​fr/​outils-cpas/​montantsrevenusm​inimum).

Fifteen percent of active PIC, mainly adult children, has to adjust their working hours. PIC are more involved in care for IADLs and much more often than professionals. A high Zarit-12 score is associated with several ADLs and IADLs tasks in univariate logistic regression analysis, indicating that professional help would be beneficial to caregivers. This observation reinforces the findings from a previous study that reported the need to strengthen professional home help for IADLs and ADLs [14] and from other studies. A stronger association was observed between PICs’ burden and the caregiving tasks than with the characteristics of the care recipient, except when the care recipients had dementia and behavioral problems [21, 26‐28]. The subjective health assessment is a powerful and useful criterion to determine health status, and its association with a higher risk of burden was described previously [29‐31]. More specifically, PIC of patients with behavioral or mood disorders should systematically get adequate support and appropriate knowledge on the pathology causing the disorder and on its development in terms of prognosis [28, 32, 33]. An attention should be paid to PIC living with the care recipient with behavioral or mood disorders while also considering the particular needs of support of children and spouses PIC [34]. Tailored-activities programs combining psycho-educational support for PIC and assessment of abilities and interests of patients have shown mild to moderate effect on caregiver burden in meta-analyses, with promising non-pharmacological solutions to prevent PICs’ burden [9, 35]. In addition, developing respite services to support leisure activities for PICs could prevent burden. Regarding the difficulties of accepting help, psychological support should also be provided to the patient to promote acceptance of familial and professional help.

A recent review on the health effects of caregiving summarized negative and positive effects of caregiving. Caring was described as a mixture of satisfaction and represented a challenge for the PIC, making it crucial to pay attention to the PICs’ health status [36‐38].

We observed that while caregiving can be stressful, it can also be rewarding: 83% of PIC were satisfied to take care of their relatives and did not wish to place them in a nursing home, suggesting that the assistance provided strengthens family ties and the feeling of satisfaction of taking care [39]. For PIC who wish to place their relative in nursing home, they should benefit in priority from an individual follow-up since it reveals a situation at risk for both PIC, for mental and health status and care recipient, for elder abuse and unmet needs. Moreover, in Belgium, it may take several months to find a place in nursing home. On the contrary, PIC could feel guilty for having to put their proxy in a nursing home [31, 40]. It is worth keeping in mind, however, that our survey does not cover all the factors that could influence PICs’ burden, and that the reality is much more complex. The refusal of professional help or a placement in a nursing home are sometimes underpinned by a feeling of guilt from the PIC, or by a feeling of failure, which could have influenced the answers. GDH could play a supporting and accompanying role in preventing the deterioration of the caregiver’s health, particularly of spouses, who are often as old as the care recipients.

Many PIC do not know to whom or where to turn when they need professional help. This study suggests that geriatric outpatient teams can play a major role in identifying the needs of PIC in GDH, focusing first on PIC at risk of high burden. It could allow providing early social and psychological assistance, continuing education on chronic diseases and dementia, in collaboration with general practitioners and dedicated non-profit organizations, while taking into account the individual risk factors of both the PIC and the care recipients.

This study shows that primary informal caregivers of older patients attending assessment in geriatric day hospitals are mainly women, and are mainly adult children or spouses. They are frequently involved in ADL and IADL and they feel burdened. A high burden was associated with living with the relative, the difficulty to take leisure time or vacation and the relative’s behavioral and mood disorders. Bathing the relative and a subjective health status estimated as good as or better than people the same age were protective factors against a high burden. Although our study focused only on caregivers of outpatients in GDHs, our findings are consistent with those reported in the literature and highlight the importance of financial and psychosocial impacts of helping his/her relative.