Background
Close to 35.6 million individuals globally are affected by dementia, and this number is set to double by 2030 and to triple by 2050 (reaching 115.4 million) [
1,
2]. The high rate of cognitive degenerative diseases that accompanies the increase in the aging population [
3] therefore represents a major international public health issue [
2].
Due to limited progress in the development of therapies, dementia is still an incurable chronic disease. However interventions exist to support people with dementia and their families to reduce disruption of their lives and maintain their quality of life. Support from relatives is a cornerstone of the healthcare and the economic systems [
4,
5]. In this review, the term “caregiver” refers to the primary caregiver; it does not include the health professionals who take care of people with dementia. The caregiver is defined as a primary caregiver “who is directly involved with an individual in need of care and who provides for that individual’s daily needs in an informal, non-professional manner. A caregiver is someone who assists an individual who is disabled or having difficulty in completing daily activities and who ensures their safety and connection with society. Family members, friends, and neighbors can all be caregivers” [
6]. Several studies have shown that caring for people with dementia can have positive implications for caregivers. Therefore, by providing care, they may feel a sense of mastery and accomplishment that leads to personal growth and a sense of reward and satisfaction [
7]. These positive feelings vary depending on various factors such as education, the duration of the caregiving, and the level of social support [
8]. Despite these positive feelings, taking care of people with dementia can increase distress levels among caregivers who report poor health and a lack of family support [
9]. On the other hand, the feeling of being prepared and a level of trust reduces the level of distress [
10]. Caregivers are involved in this task on a daily basis, and they consequently feel overburdened at times [
11‐
16]. The burden that caregivers feel can be defined as the combined set of social, emotional, psychological, physical, and financial consequences [
17]. The overload due to the daily demands placed on caregivers can lead to their mental exhaustion.
The needs of caregivers can be met by having adequate information, training, recognition, proper organization regarding care, and above all respite from the demands placed on them [
9]. Indeed, respite is essential for caregivers of people with dementia although the available respite programs appear to be underutilized [
18,
19]. It is therefore important to identify the factors that promote or impede the use of respite services.
The support programs or caregivers have been progressively deployed to meet their needs. Interventions that provide information and training were the first to be introduced, followed by discussion groups providing psychological support. A genuine need has clearly emerged to develop specific interventions to provide respite for caregivers [
20].
“Respite in the broad sense of the term is defined as an interruption in an absorbing or constraining occupation; rest”; “a momentary stop, the suspension of something painful or suffering.” [
21]. Several types of respite interventions have been devised. Each separately addresses caregivers’ needs. Respite benefits can be provided during the day or night, at home or away from home, for a short period or on a daily basis in a daycare facility [
22,
23]. They can be scheduled ahead of time or on short notice [
24]. Respite decreases feelings of loneliness, anxiety, depression, and the sense of “burden” that caregivers often feel, thereby leading to an improvement in their behavior and their quality of sleep [
25‐
27]. Respite also improves the relationships, family bonds, and behaviors of the person with dementia [
28]. Certain programs have long-term beneficial effects on caregivers’ health [
29].
Several types of studies have been conducted to assess the factors that influence the use of respite services for people with dementia. These studies are qualitative systematic reviews focusing exclusively on qualitative studies [
30], a narrative synthesis of the literature that focuses only on non-use factors of respite services [
31], and a review of the literature on the use of respite services but without the inclusion of mixed methods studies [
32]. The purpose of this integrative review is to provide a different and specific method for summarizing empirical or theoretical literature to provide a more complete understanding of a healthcare problem or phenomenon [
33]. This study was to target the non-use factors and the use factors of respite services by investigating studies with various methodologies.
Methods
Search strategy
The aim of this integrative review was to identify the barriers to and the factors promoting the use of respite interventions by caregivers for people with dementia. The results should help devise guidelines that policy and/or executive bodies can use for the implementation of support interventions.
An integrative review was conducted based on Whittemore and Knafl’s (2005) recommendations, and it involved five stages: 1) identification of the issue, 2) a literature search, 3) evaluation of the data, 4) analysis of the data, and 5) presentation of the results.
The integrative literature review is defined as a comprehensive systematic search method that includes all scientific studies. The theoretical and empirical elements are taken into account and analyzed in order to provide a complete understanding ensuring a systemic vision of the subject treated.
The search for relevant documents was carried out using PubMed and CINAHL databases. The MESH terms were “caregivers,” “Alzheimer,” “dementia,” and “respite.” The various terms were combined using Boolean operators to obtain a search equation (Additional file
1).
Two researchers carried out the article selection and analysis stages to ensure cross-checking and controls. Using the results in the various databases, we performed the first selection by restricting the languages; then we perused the titles and abstracts while using the criteria for inclusion and noninclusion. Elimination of duplicates was performed at the same time. Reading of the full articles then allowed for evaluation of the scientific studies’ methodological quality and the final selection.
Study inclusion and exclusion criteria
The included articles were selected based on the following criteria: caregivers for people with dementia, respite services (caregiver respite in an institution or at home), and factors promoting or impeding the use of respite. The articles were published from 1980 to 2016, and they were written in French, English, Portuguese, and Spanish. Primary studies of a qualitative, quantitative, or mixed nature derived from the scientific literature were selected. To provide experts’ knowledge, the gray literature was also consulted. Studies conducted in hospital care but not matching care for people with dementia were excluded.
Study quality assessment
Two researchers independently evaluated the methodological quality of the preselected studies with the “mixed methods appraisal tool” (MMAT) checklist [
34]. This operational grid is composed of several items (Additional file
2). The quality grid allowed for a score ranging from 0 to 4, with the highest scores indicating better quality. Scientific studies with a score of 3 or 4 were selected. The scientific studies that did not meet the methodological criteria were not retained. When the evaluations were discordant, the two researchers discussed the discrepancy to reach a consensus. The consensus factors were based on the 19 items in the MMAT evaluation grid and on the levels of evidence Tavares et al. (2010) proposed for gray literature documents [
34,
35]. In the end, 51 articles were selected with a moderate level of concordance (Kappa = 0.55).
After the article selection, a descriptive and analytical reading was carried out, and a summary table of the selected articles was generated. The analysis of the studies was carried out according to the principles recommended by Miles, Huberman, and Saldaña (2014). An encoding using the MAXQDA 12 software analysis tool allowed for a regrouping of subthemes in a pattern group and determination of the theme categories [
36]. The data was coded in two stages. During the first coding cycle, codes that represented symbolic descriptive or deductive information were assigned. These codes were allocated to large parts of the participants’ statements, and they promoted the grouping of data segments. Then a second coding cycle promoted the identification of “pattern codes” to group these summaries into a smaller number of thematic categories. In the end, a data matrix was produced (see Fig.
2), allowing an analysis of the themes and a summary of the salient points guiding the discussion. The discussion was written in light of the current political context and the state of current scientific knowledge.
Discussion
The purpose of this integrative review was to identify the factors that promote or hinder the use of respite interventions by caregivers for people with dementia. Several authors have already highlighted various elements, particularly regarding the problems of access to respite, the problems related to communication, and caregivers’ various expectations [
30‐
32]. However, this study’s results show that the attributes of respite benefits are the factors that most cited in literature. By examining this factor in more detail, we have identified the notions of geographical distance, administrative complexity, and financial requirements as barriers to respite. O’Shea et al. (2017) and Phillipson et al. (2014) highlighted these elements in their systematic reviews, only geographical distance notion is a new element. On the other hand, our results highlight the need to change the way care is managed to foster networking and collaboration with caregivers. Participation in the network is essential to provide a multidisciplinary approach in the holistic management of the dyad. O’Shea et al. (2017) highlighted the importance of supporting the transition to the use of respite services. From that our study’s results, one can assume that this task could be assigned to a case manager. Indeed, several authors have supported the case manager’s importance in the coordination of complex care involving all care partners [
71,
77], which ensures a personalized follow-up taking into account the dyad’s specific needs. Indeed, the use of respite services by caregivers of people with dementia is often low because the services do not seem to meet the caregivers’ expectations. Moreover, as noted in this study and in the systematic reviews by Neville et al. (2015) and O’Shea et al. (2017), communication problems arise between caregivers and respite care providers. The case manager could help reduce these problems. A partnership between health professionals and caregivers can help avoid communication problems and assimilate each of the two parties’ skills to potentiate a personalized procedure for the management of the dyad. Caregivers can guide decisions, for example, in developing a care plan. This is a new paradigm that health professionals still need to fully embrace. Indeed, this acceptance requires the will to share care [
89]. This partnership also requires that the caregiver agrees to work with health professionals and thus use the respite services. This study’s results indicate that this small step is complicated for the caregiver. Indeed, Strang (2000) and Mollard (2009) indicated that notions of a cognitive nature, feelings, and values influence this decision [
21,
74]. The partnership between health professionals and caregivers can minimize caregivers’ feelings of guilt, betrayal, insecurity, and loss of control and improve their quality of life [
90]. To foster collaboration, health professionals must acquire self-assessment skills and support caregivers’ transitions to respite services [
49,
55,
60,
61,
65,
87,
88]. However, it is important to recognize that experienced caregivers have, over the years of care, acquired substantial skills [
91,
92]. Through their partnership, the use of their skills will allow for recognition of the caregiver’s role in society [
9].
Based on the importance of respite services’ attributes, the benefits provided to the care recipient must be high-quality and personalized. Several authors indicated that to guarantee the quality of respite care, measures must be considered in institutional and home respite care facilities [
30,
53].
This finding requires the involvement of policy makers and health professionals. This integrative review has highlighted “changeable” and “unchangeable” factors that influence the decision to access respite. Actions that may affect the “changeable” factors relate directly to health policies [
93], particularly the decisions that guide the implementation of respite interventions. However, a large part of the responsibility is attributed directly to health professional, who by providing daily care have a pronounced influence on patients’ quality of life [
94,
95]. The partnership with health staff can affect access to respite, patient-centered care, personalization of care according to the dyad’s needs, the sense of burden, the quality of the care provided, the beliefs of caregivers, and the credibility that they are afforded.
The immutable factors, that is to say ethnicity, values, the relationship that exists in the dyad, and the characteristics of caregivers and the individuals living with the disease, are not modifiable. It is policy makers’ and health professionals’ responsibility to adapt to these indicators and take them into consideration upon the creation or alteration of respite interventions and in the daily provision of care. These actions are important for addressing caregivers’ needs and expectations in terms of their role as carers, the intervention attributes caregivers expect, and their expectations regarding the respite’s effects on themselves and their relatives living with the disease. Unlike other types of systematic reviews, this review’s analysis method revealed the link between the various factors influencing the use of respite services and the people they affect. In addition, it highlights the fact that the use of caregivers’ skills in partnership with politicians, decision makers, and care teams can influence the use of respite services. Beyond the information caregivers learn when caring for people with dementia, they can provide solutions in the care of people with dementia, boosting their and their charges’ health and avoiding unnecessary hospitalizations that pose a considerable cost to society and to the safety and quality of care. Respite services must be redesigned to integrate caregivers’ experiential skills into care. A limitation of this study is that the majority of cases occurred in the United States. Due to the difference in ethnicity and health culture, this factor could hamper the transposition of results. In addition, the analysis corresponding to the prioritization of the factors cited in the literature has limitations. Indeed, the most cited factors may have more to do with the availability of data, the factor’s popularity, or the researchers’ biases than with the priority areas.
Conclusion
This study’s results reveal important elements that policy makers and institutional decision makers should consider. The functioning and organization of respite services must meet the dyad’s specific needs. To meet caregivers’ needs, future research could focus on the evaluation of a systemic support program that could meet all the needs of caregivers. It should integrate the need for information, training, recognition, respite, socialization, and financial support. This intervention could be designed based on the fundamentals of a so-called win-win partnership.