Background
Nowadays, self-management and self-management support are becoming more and more important. Besides the fact that health policies encourage people to self-manage for as long as possible [
1], most people also prefer to keep control over their own life and health care. A commonly used definition of self-management in this context is “the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition” [
2]. Self-management is not only a task for patients but also for informal caregivers. In people with dementia, self-management increasingly becomes the responsibility of the informal caregivers as the disease progresses. However, self-management often makes great demands on informal caregivers. Besides managing problems in the person with dementia, they also have to manage their own problems, such as concerns about the future and the daily burden of caregiving. This can have negative consequences for the psychological wellbeing of the informal caregiver [
3] and may have an impact on the relationship with the person with dementia [
4].
Managing well with the problems and consequences of dementia is challenging for informal caregivers, and professional support may be needed. Nurses, psychologists or other professionals can act as partners with the informal caregivers, by supporting them in their decisions and actions to manage the disease and its consequences in daily life [
5]. What type of support or intervention should be provided by professionals to informal caregivers depends on how the informal caregivers are managing or where they feel the need for support. A logical way to distinguish different types of self-management support interventions is to categorize them according to the main target of the intervention. Martin, et al. [
6] distinguish five self-management targets for persons with dementia:
1) relationship with family, 2) maintaining an active lifestyle, 3) psychological wellbeing, 4) techniques to cope with memory changes, and 5) information about dementia. Since self-management by informal caregivers focuses first and foremost on the patient, the patient targets are also applicable when categorizing self-management support interventions aimed at informal caregivers.
In recent decades, many interventions have been developed to provide self-management support to informal caregivers of persons with dementia. Most of the time however, these interventions were labeled not as such as the concept of self-management has emerged relatively recently. Self-management support interventions were labeled for example as ‘psychosocial interventions’, ‘support interventions’ or ‘case management interventions’. Related to these wide variety of labels used for these interventions, until now there has been no insight into the level of evidence for the effectiveness of different types of self-management support interventions for informal caregivers of persons with dementia. Nevertheless, there were already a lot of relevant review papers. We therefore conducted a systematic meta-review, making use of the self-management support targets defined by Martin, et al. [
6]. Additionally, we aim to identify participant and intervention characteristics that are related to positive outcomes of self-management interventions.
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The primary question of this systematic meta-review is:
What scientific evidence exists for the effectiveness of various types of professional self-management support interventions for informal caregivers of persons with dementia?
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The secondary question is:
Which participant and intervention characteristics of self-management support interventions for informal caregivers of people with dementia are associated with larger effects?
Discussion
This meta-review shows that scientific evidence exists for professional self-management support interventions targeting
psychological wellbeing of informal caregivers of people with dementia. Effective interventions within this target were caregiver support group interventions, which were shown to relieve stress [
15]; and cognitive reframing interventions that were shown to improve caregivers’ social outcomes such as social support, relationship with the patient and life quality [
20]. Evidence was also found for the effectiveness of professional self-management support interventions targeting
information on increasing caregivers’ knowledge. Examples of effective interventions in this target are psycho-educational interventions [
19,
22].
Limited evidence was found for the effectiveness of self-management support interventions targeting
techniques to cope with memory change on improving coping skills, mood and competence of informal caregivers [
22]. Training programs are examples of these self-management support interventions. Further, limited evidence was also found for some interventions targeting
information on improving decision-making confidence, stress and sense of competence [
13,
18]. Examples for these interventions are internet-based support interventions and computer-networking interventions.
Inconclusive evidence was found for self-management support interventions targeting relationship with family and targeting techniques to cope with memory change on relieving caregiver burden. Self-management support interventions targeting psychological wellbeing were also found to have inconclusive findings on four caregiver outcomes including: burden, depression, wellbeing and anxiety. In the self-management support target information, inconclusive evidence was found on relieving burden and depression or improving wellbeing and self-efficacy in the informal caregiver. For multi-component interventions, inconclusive evidence was found on caregiver burden, depression, quality of life, mood and sense of competence.
Not much research was found on the informal caregiver outcomes self-efficacy, decision-making confidence, anxiety, stress or distress, RMBPC, quality of life, social outcomes, mood, health and sense of competence. Besides, none of the included reviews described effects of self-management support interventions targeting maintaining an active lifestyle.
We also aimed to identify specific intervention or participant characteristics that contributed to the effectiveness of these interventions. Two systematic reviews additionally performed analyses to investigate this. It is notable that both reviews found that in particular group course (≥8 weeks) and intensity (≥16 h) and longer interventions (number of sessions, not further specified) are associated with larger effects [
19,
20]. These findings are in line with previous reviews, which also describe the importance for longer interventions or follow-up [
23,
24].
The reviews in this meta-review studied different types of self-management support interventions. There was a considerable amount of variability between the underlying studies regarding, for example, content of the intervention, measurement tools used and implementation of the intervention. Despite this variability, it is noteworthy that psycho-education was integrated in most self-management support interventions that were found to be effective. For example, effective caregiver support group interventions consisted in most cases of a (psycho) educational group. Furthermore, it was shown that psycho-educational groups had a significantly higher effect on the outcome variables psychological well-being and depression [
20]. The review of Pinquart and Sorensen [
19] analyzed psycho-educational interventions with active participation of caregivers versus psycho-educational interventions that only provided information. Both interventions increased caregivers’ knowledge, but psycho-educational interventions with active participation of the caregiver had the broadest effects. An example of a psycho-educational intervention included in the review of Pinquart and Sorensen [
19] was a intervention described by Hébert, et al. [
25]. In this study, a group-intervention was tested consisting of fifteen two-hour weekly sessions and contained two components (cognitive appraisal and coping strategies). The intervention was aimed at primary caregivers of community-dwelling persons with dementia [
25].
Looking at the main outcomes of the meta-review, the self-management support target of the successful interventions was directly related to the outcomes in informal caregivers. For example, self-management support interventions targeting information were found to be effective for improving the ability/knowledge of informal caregivers. This could also explain why we found no evidence for the effectiveness of interventions in the targets maintaining an active lifestyle on informal caregiver outcomes, since they were more focused on persons with dementia rather than on the informal caregiver.
Implications for research and practice
Evidence exists for self-management support interventions targeting
psychological wellbeing and
information on specific caregiver outcomes; however more research is needed. To date, only limited research has been described in existent systematic reviews on, for example, the effect of self-management support interventions on quality of life or self-efficacy of the informal caregiver. This is remarkable because in many other studies on supporting self-management for people with long term conditions, it has been shown that self-management support can impact on these outcomes and that they are associated with each other [
26]. Future research could focus on these outcomes for self-management support interventions for informal caregivers of persons with dementia.
Furthermore, more research is needed to investigate how effective interventions can be deployed and implemented. Although further investigation is needed, e-health was shown to be a promising extension to the currently offered care as usual [
13]. Further research could take forward how self-management support interventions could be delivered by e-health.
Although self-evident, the results of this meta-review shows that it is important that the self-management support target is related to the main self-management need of the informal caregiver. For example, if health care providers want to improve caregivers’ social outcomes, they should focus on interventions targeting psychological well-being. Therefore it seems more beneficial to tailor a self-management intervention to the needs of the informal caregiver by using interventions that target on these specific needs.
This meta-review also indicated that longer interventions were associated with greater effects [
19,
20] on some caregiver outcomes. This finding suggests that self-management support interventions should be given over an extended period of time and with a certain intensity.
Another relevant finding of this meta-review is that most of the effective self-management support interventions involved psycho-education. We therefore recommend health care professionals to consider psycho-education when focusing on self-management support targets information and psychological well-being.
Strengths and limitations
To our knowledge, this is the first meta-review that gives insight into the level of evidence for the effectiveness of different types of self-management support interventions for informal caregivers of persons with dementia. Another important strength is the high methodological quality of the included reviews, indicating good reliability of the results which therefore may be appropriate for use in decision making [
11].
Nonetheless, some limitations should be addressed. As mentioned earlier, none of the retrieved reviews labeled the interventions studies as ‘self-management support interventions’. Therefore, our selection of the reviews for inclusion and allocation of the reviews to intervention targets could contain an element of subjective judgment. An explicit definition of ‘self-management support’ interventions was used by the reviewers in order to minimize this.
Another limitation concerns the heterogeneity of the self-management support interventions within specific intervention targets regarding, for example, the nature and intensity of the interventions. This should be taken into account when interpreting the results.
Furthermore, a limitation is that the reported evidence in the reviews is sometimes partially based on the same underlying intervention reviews. An example of this is the review of Mantovan, et al. [
22] that included, in addition to effect studies, systematic reviews (e.g. Thompson, et al. [
21] and Pinquart and Sorensen [
19]). However, the fact that Mantovan, et al. [
22] included these two reviews did not change the conclusions of this meta-review.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
JGH and PM designed and performed a systematic search of the literature. JGH, RV, PM and ALF performed the selection of references. JGH, RV and ALF evaluated the methodological quality of the references. JGH and BM extracted data of the included studies. All authors revised and commented on the manuscript. All authors read and approved the final manuscript.