Study selection
Four thousand nine hundred fifty-six references were identified from database searches. After merging the search results, all references were entered into EndNote, and 4093 references remained after duplicates were discarded. The first (JGH) and second reviewer (RV) reached substantial agreement on the 10 % random selection of the references (kappa coefficient of 0.71) [8] and therefore the remaining 90 % of the references were checked by the first author (JGH). 166 references remained after selection based on title and abstract. Full texts were searched for the 166 references, of which 163 were actually obtained. Four reviewers independently screened the full texts; the first reviewer (JGH) screened all full texts articles, one reviewer (PM) half of the total number of full texts, and two reviewers (RV, ALF) a quarter of the total full texts. Disagreement was resolved by discussion until consensus was reached. In total, 36 references remained after full text screening and were selected for the next stage of the review—the methodological assessment. Reasons for exclusion of the 130 references are detailed in Additional file 4. Three reviewers independently determined the methodological quality of the 36 references, of whom the first reviewer (JGH) screened all reviews and two reviewers (ALF, RV) both performed selection on half of the total number of included reviews. Ten reviews were evaluated with a high quality score. These high scores were based on well-documented methodology and the assessment of validity of the included primary studies. Twenty-six reviews received a score between one and four, reflecting ‘extensive’ to ‘major’ flaws in respect of the checklist. The main reason for excluding these reviews was that they either did not take measures or did not report on measures to prevent selection bias. In conclusion, ten reviews were selected for data-extraction (see Fig. 1).
Characteristics of the reviews included
Additional file 5 shows general and methodological characteristics of the ten reviews included.
Publication date, origin of authors, journals and design of included reviews
Publication dates of the reviews included ranged from 2003 to 2013. The majority were published in the past 5 years. Three of the reviews were conducted in the Netherlands [13–15], and the remainder in Australia [16], Brazil [17], Canada [18], Germany [19], Taiwan [20] and the United Kingdom [21], while a review written in German had a correspondence address in Italy [22]. All reviews had a systematic review design, and five also contained a meta-analysis [16, 17, 19–21].
Objectives of reviews included
All included reviews aimed to focus on the effectiveness of interventions. Half of the reviews focused on a specific type of intervention, e.g. internet-based interventions, support group interventions or case management interventions. Five reviews did not specify the type of intervention in advance and discussed a broader range of interventions. None of the included reviews explicitly used a definition of self-management or self-management support.
Eligibility criteria of reviews included
The target population in all reviews comprised informal caregivers of persons with dementia. The underlying studies in the reviews mainly evaluated the effectiveness of interventions (RCT, CCT, quasi-experimental design). Additional to the inclusion of these designs, two reviews also included systematic reviews [16, 22]. Reported outcomes of the intervention varied in the reviews; see Additional file 6. Restrictions in the reviews were mainly related to language: six reviews reported language restrictions [13, 14, 16, 19, 20, 22]; two reviews explicitly reported to have no language restrictions [17, 21].
Information sources and search periods of the reviews included
All included reviews performed a comprehensive search in at least three databases [range 3 to 15]. PubMed was used in all reviews and the Cochrane Library in most. In addition, almost all reviews carried out other searches such as manual searches or searches of references listed in the reviewed studies. In seven reviews [13, 15, 17–21], the search comprised an extensive publication period of 10 years or more; three reviews had a shorter search period [14, 16, 22]. However, two of these concerned an update of an earlier review and thus included earlier reviews or the related underlying studies.
Score of methodological assessment of the reviews included
Six reviews received a quality score of 5.0 or 5.5, reflecting ‘minor flaws’ [13, 14, 16, 18, 21, 22]. Four reviews were found to have ‘minimal flaws’ based on quality score of 6.0 or 7.0 [15, 17, 19, 20]. Three reviews [15, 17, 20] received a quality score of 7.0 indicating that they met all quality requirements of the Quality Assessment Checklist for Reviews.
Number, design and control conditions of underlying studies in the reviews included
In total, 313 underlying studies were included in the reviews (range 7–127). In these underlying studies, 292 interventions are considered to be self-management support interventions based on the inclusion criteria of this meta-review. Generally, almost all reviews included only RCTs. The control conditions mainly involved usual care or a limited version of the intervention.
Number of intervention sessions, intervention period and professional who delivered the intervention
The number of intervention sessions and/or intervention periods were often not described by the included reviews. Some reviews reported these characteristics for a number of the underlying studies; accordingly, a range for intervention sessions and intervention periods is given. Few studies contained information on the professional who delivered the intervention. In those reviews that contained this information, nurses and case managers were the most frequently reported professionals [see Additional file 5].
Results of underlying studies in reviews included
The underlying self-management support interventions of the included reviews and their reported outcome measures differed too much for their results to be pooled. Therefore, the interventions and results are categorized on the basis of the targets distinguished by Martin, et al. [6]: relationship with family/friends/“carer”, maintaining an active lifestyle, psychological well-being, techniques to cope with memory change, information and multi-component interventions. Within each category, first the different types of self-management support interventions are presented and the overall goal of each self-management support intervention is stated. Second, evidence for the self-management support interventions is presented based on the outcome. Additional file 6 presents the outcomes and effects of the reviews included. The most reported outcomes in the included reviews and the reported effectiveness of the self-management support interventions are shown in Additional file 7.
Self-management support interventions targeting relationship with family/friends/“carer”
Four reviews [16, 18, 19, 22] described self-management support interventions which target a supportive relationship between the person with dementia and the informal caregiver. Three reviews [18, 19, 22] described case management interventions; one review [16] included support interventions involving care planning and case management; and one review [18] described psychotherapy interventions.
Case management interventions under this target included advice and support by a health professional aimed at resolving personal problems that complicate informal care giving, to reduce conflict between caregivers and care recipients, and to improve family functioning.
Support interventions under this target consisted of supporting caregivers in their role involving care planning and case management.
Psychotherapy interventions consisted of individual and family counseling that focused on communication and problem-solving in relation to caregiving.
Using the described method for evidence synthesis, inconclusive evidence exists for the effectiveness of self-management support interventions, that focus on family relationships, for relieving caregiver burden [16, 19, 22] and enhancing coping skills [22]. All reviews that reported on caregiver depression presented no evidence [18, 19]. Other outcomes for which no evidence was found for the caregiver included subjective wellbeing and ability/knowledge [19]. None of the included reviews examined effects on self-efficacy, decision-making confidence, anxiety, stress, Revised Memory and Behavior Problem Checklist (RMBPC), quality of life, mood, health and sense of competence.
Self-management support interventions targeting the maintenance of an active lifestyle
None of the included reviews described self-management support interventions targeting the maintenance of an active lifestyle with effects on the informal caregiver.
Self-management support interventions targeting psychological wellbeing
Four of the reviews included described self-management support interventions targeting psychological wellbeing [15, 19, 20, 22]. In this category different types of interventions are categorized including caregiver support group interventions [20], psychotherapeutic interventions, support interventions [22], cognitive behavioral therapy, general support [19] and cognitive reframing interventions [15].
Support interventions, i.e. caregiver support groups and general support, under this target consisted of mutual emotional support for informal caregivers where they can share personal feelings, experiences and knowledge with other informal caregivers in order to relieve the pressure and burden of caregiving.
Therapeutic interventions, i.e. psychotherapy and cognitive behavior therapy, under this target involve dealing with difficult care situations and caregiving demands, and fostering activities that may promote subjective well-being.
Cognitive reframing interventions “focus on changing self-defeating or distressing cognitions into those cognitions that support adaptive behavior and reduce anxiety, depression and stress” [15].
Synthesizing these interventions under this target, evidence was found for self-management support interventions targeting psychological wellbeing for relieving stress or distress [15] and positive social outcomes [20]. Inconclusive evidence was found for the effectiveness of self-management support interventions targeting psychological wellbeing on relieving burden [15, 19, 20, 22], reduced depressive symptoms [15, 19, 20, 22], improving caregiver wellbeing [19, 20] and alleviating anxiety [15, 22].
No evidence was found for ability/knowledge [19], coping skills, self-efficacy and RMBPC [15]. None of the included reviews examined effects on the following outcomes reported in the included reviews: decision-making confidence, quality of life, mood, health and sense of competence.
Self-management support interventions targeting techniques to cope with memory change
Two of the reviews included described self-management support interventions targeting techniques to cope with memory change [19, 22].
Training programs under this target consisted of skills training for the informal caregivers, for example, to improve communication and problem solving skills. The person with dementia may possibly also be involved in the program, for example, in cognitive stimulation, ADL training and physical activity. Because physical and cognitive decline and behavior problems in the care recipient are associated with caregiver burden and depression, memory clinics and programs aimed at improving the competence of the care recipient may also have a positive effect on caregiver outcomes.
Limited evidence was found for the outcomes coping skills, mood and competence of the informal caregiver [22]. Inconclusive evidence was found for caregiver burden. No evidence was found for the effects of self-management support interventions targeting techniques to cope with memory change on caregiver depression, subjective wellbeing and ability/knowledge [19, 22]. None of the included reviews examined effects on self-efficacy, decision-making confidence, anxiety, stress/distress, RMBPC, quality of life, social outcomes and health.
Self-management support interventions targeting information
Seven of the reviews included described self-management support interventions targeting information [13, 16–19, 21, 22]. In this category, different types of interventions were categorized including (psycho-) educational interventions [16–19, 22], internet-based interventions [13], computer-networking interventions [18] and information and support interventions [21].
(Psycho-) Educational interventions under this target consisted of providing interdisciplinary education and knowledge about dementia, and teaching (coping) skills to support caregivers in their role. Pinquart and Sorensen [19] add that support may constitute part of psycho education, but is secondary to the educational content [19].
Internet-based computer-networking interventions under this target comprised education provision, decision-making support, communication and an opportunity for questions and answers for informal caregivers (through a computer network).
Evidence was found for the effectiveness of interventions targeting information on ability/knowledge [19, 22]. Limited evidence was found for caregiver stress [13], decision-making confidence [13, 18] and sense of competence [13]. One underlying study found a reverse effect on the outcomes anxiety, depression, well-being and quality of life. Anxiety and depression decreased significantly and well-being and quality of life increased in the control group whereas people in the online intervention group did not improve with respect to these outcomes [13]. Inconclusive evidence was found for improving caregiver burden, depression, well-being and self-efficacy [13, 16, 19, 22]. For coping skills and quality of life, two underlying studies had inconclusive findings. No evidence was found for caregiver health [16]. No research was found addressing RMBPC, social outcomes and mood.
Multi-component interventions
Four reviews [14, 16, 19, 22] included multi-component interventions. Multi-component interventions under this target consisted of a combination of various forms of interventions such as information, (psycho) education, support skills training and coping strategies for the caregiver and may also involve training for activities of daily life (ADL), walking or exercise and environmental adaptations for the person with dementia.
Inconclusive evidence was found for the effectiveness of multi-component interventions on caregiver burden, depression, quality of life, mood and sense of competence [14, 16, 19, 22]. No evidence was found for well-being and ability/knowledge [14, 16, 19, 22]. None of the included reviews examined effects on coping skills, self-efficacy, decision-making confidence, anxiety, stress/distress, RMBPC, social outcomes and health.
Intervention and participant characteristics
Two reviews additionally performed analyses on intervention and participant characteristics [19, 20]. The review of Chien, et al. [20] conducted subgroup and regression analyses on intervention and participant characteristics, and their association with outcomes. Associations between these characteristics and effects were found in this review for the following characteristics: (psycho) educational groups, use of theoretical models, group size (6–10 people), group course (≥8 weeks) and intensity (≥16 h), follow up, leader background (interdisciplinary), female participation and age [20].
The review of Pinquart and Sorensen [19] also analyzed the association between intervention and participant characteristics. Associations for some outcomes were found for longer interventions (number of sessions, not further specified) and higher percentage of women [19].