A total of 18 studies were included in the current integrative review. Two studies were essentially from the same study, one being an intervention trial (Joosten-Weyn Banningh et al., 2011) and the other a post-intervention follow up (Joosten-Weyn Banningh et al., 2013). The Table describes each of the 18 studies in detail.
Study Design and Level of Evidence. The 18 studies included 11 quantitative and seven qualitative designs. The quantitative study designs included four randomized controlled trials (RCTs), two non-RCTs, three single-group pretest–posttest intervention studies, one single-group posttest-only follow-up study, and one descriptive study. The level of evidence of each study was rated on a 7-point scale using Melnyk's hierarchy of evidence based on the study design (Level 1 represented the highest level and Level 7 represented the lowest level). Because the current review only included original research articles, none of the selected studies were at Level 1 (systematic reviews, meta-analyses, clinical guidelines) or Level 7 (expert opinion). Of the 18 studies, eight were at Level 6, with most using qualitative methods, followed by five studies at Level 3, four studies at Level 2, and one study at Level 4.
Sample. Of the studies targeting individuals with MCI/ESD, samples ranged from one to 35 participants in the qualitative studies and 17 to 87 participants in the quantitative studies. Of the studies targeting patient–care partner dyads, samples ranged from four to 139 dyads in the qualitative studies and eight to 142 dyads in the quantitative studies. Of 11 quantitative studies, one (Joosten-Weyn Banningh et al., 2011) determined sample size based on power analysis and none of the studies conducted a post hoc power analysis. As for participants' stage of cognitive impairment, 14 of 18 studies focused on individuals with ESD, whereas the remaining studies focused on individuals with MCI. None of the selected studies enrolled participants with both MCI and ESD.
Support Group Modalities. Approaches of Support Groups. Almost all support groups in the current review involved some level of emotional and peer support and two thirds of the studies also included educational support. One study compared the effect of different support group approaches, including emotional versus educational support (Cheston & Jones, 2009). The support groups were led by a variety, and oftentimes combination, of professionals, with the most frequent facilitators being social workers, nurses, and psychologists. Most of the support groups were conducted in person, with the exclusion of one online support group (Clare, Rowlands, & Quin, 2008). Most support groups met at community locations.
Participants. A total of 14 studies included participants with MCI/ESD and their care partners. Of these, six had dyads attend the same sessions together, six had them attend separate sessions and then join together for the remaining part, and two had participants with MCI/ESD attend independently (with their care partners invited to certain sessions). Participants' ethnicities were under-reported and not equally represented. Only five studies reported participants' demographics, with at least 94% of White participants in each study. Approximately 45% of studies were conducted in the United States, as well as 28% in the United Kingdom, 12% in The Netherlands, 5% in Sweden, 5% in Australia, and 5% in China.
Frequency. Duration of support groups ranged from 60 to 180 minutes, with 120 minutes being the most common meeting duration. Eleven groups met weekly, whereas some met twice per week, biweekly, or once every 1 to 2 months. Most support groups were time-limited, ranging from 4 to 15 weeks (with 10 weeks being the most common length), and the longest support group met for 4 years.
Outcome Variables. A variety of outcomes were investigated on the impact of support groups on individuals with MCI/ESD, their care partners, and the support group process. Outcome variables for participants with MCI/ESD included depression, quality of life (QoL) and sense of well-being, self-esteem, performance and satisfaction of meaningful activities, anxiety, knowledge of dementia, acceptance of cognitive impairment, resilience, self-help, self-efficacy, coping self-efficacy, coping skills, self-care effectiveness, activities of daily living, and cognitive function.
Outcome variables for care partners included QoL and health, burden, knowledge of dementia, coping, family support and communication, care preparation and task effectiveness, depressive symptoms, and stress. Some studies also evaluated the support group process, including satisfaction and acceptability with the intervention, benefits and experience of support groups, and characteristics and challenges of individuals with MCI/ESD participating in support groups.
Participants With Mild Cognitive Impairment/Early-Stage Dementia. Depression and Anxiety. Participants' depression or depressive symptoms were the most commonly investigated outcome variables tested in eight clinical trials, which revealed mixed results. One RCT (Young, Kwok, & Ng, 2014) and one quasi-experimental study (Cheston & Jones, 2009) showed significant benefits in reducing depression, although findings were not significant for six other studies, including two RCTs (Marshall et al., 2015; Schmitter-Edgecombe & Dyck, 2014), one non-RCT (Joosten-Weyn Banningh et al., 2011), two single-group studies (Gaugler et al., 2011; Lu, Haase, & Weaver, 2013), and one cohort study (Joosten-Weyn Banningh et al., 2013). Comparing the studies reporting significant versus nonsignificant results showed that study design, participants' stage of cognitive impairment, and whether the support group included education were not notably different.
The quasi-experimental study (N = 17), which compared the effects of different support group approaches, reported that after the intervention, the group with emotional support showed lower depression and anxiety, whereas the group with educational support showed higher depression and anxiety (Cheston & Jones, 2009). However, the effects between groups were not significantly different after controlling for individuals' baseline affect.
Quality of Life. Of the six quantitative studies testing the effects of support groups on participants' QoL, one large RCT (N = 142) showed significant improvement in QoL for individuals with ESD but no difference in health-related QoL (Logsdon et al., 2010). A non-RCT study (Joosten-Weyn Banningh et al., 2011) examined the population of individuals with MCI and showed no significant difference in QoL immediately post-intervention, with a 6-month post-intervention follow-up study finding decreased QoL in the same sample (p < 0.05) (Joosten-Weyn Banningh et al., 2013).
Acceptance of Cognitive Impairment, Resilience, Meaningful Activities, and Self-Help. One non-RCT study with a powered sample size reported that participants in support groups with education had significantly greater acceptance of cognitive impairment than the wait-list control participants (Joosten-Weyn Banningh et al., 2011), and the effect sustained at 6-month follow up (Joosten-Weyn Banningh et al., 2013). One descriptive study also reported that after support groups, participants demonstrated improved understanding and insight into their disease process, as well as an increased capacity to apply and work through their perceived problems (Sims & McCrum, 2012). Similarly, one qualitative study found that participants with ESD no longer considered the word “dementia” taboo and felt more comfortable using it, indicating a shift toward acceptance of their diagnosis (Anderson, 2011).
One qualitative study examined participants' resilience and revealed that support groups encouraged hope, humor, small successes, new friendships, regular connections, group intelligence, conquering loneliness, sharing common threads, and bonding (Matchar & Gwyther, 2014). Findings also suggested that the key resource for developing resilience in individuals with ESD is informal support from family and friends (Matchar & Gwyther, 2014).
One small, single-group pretest–posttest intervention study (N = 10) reported that after support groups, participants had greater performance and satisfaction with meaningful activities (Lu et al., 2013). Another qualitative study investigated participants' self-help and revealed that after diagnosis, participants experienced isolation, loneliness, and feelings of loss (Clare et al., 2008). However, support groups enabled participants to feel understood, valuable, and in control of their lives after diagnosis. Furthermore, one study followed up with participants after participating in a support group and reported that they had increased feelings of helplessness from post-intervention to 6-month follow up (p < 0.05) (Joosten-Weyn Banningh et al., 2013).
Cognitive Function and Activities of Daily Living. Two RCTs (Marshall et al., 2015; Schmitter-Edgecombe & Dyck, 2014) and one single-group intervention study (Lu et al., 2013) evaluated cognitive functioning and only one of the RCTs found significantly positive results (Schmitter-Edgecombe & Dyck, 2014). Schmitter-Edgecombe and Dyck (2014) reported that participants with MCI receiving support groups with education showed significant improvement in memory compared to standard care groups, whereas another small, single-group intervention (Lu et al., 2013) reported support groups without education showed no significant benefits on cognitive function. Although the three studies measured different domains of cognitive function and the study outcomes may not be able to be compared directly, participants with MCI appeared to benefit from support groups with education but not from those without education (Schmitter-Edgecombe & Dyck, 2014). Support groups with education did not benefit cognitive function for individuals with ESD (Marshall et al., 2015). Unsurprisingly, one study reported that participants had increased cognitive deterioration between post-intervention and 6-month follow up (p < 0.001) (Joosten-Weyn Banningh et al., 2013).
Four studies examined participant physical activity. One single-group intervention study found self-reported improvement at 3-month follow up (Roberts & Silvero, 2009) and another single-group intervention study (N = 61) reported increased dependence in instrumental activities of daily living (IADLs) (Gaugler et al., 2011). In contrast, one small RCT (Schmitter-Edgecombe & Dyck, 2014) and one small single-group study (Lu et al., 2013) did not find significant differences in ADLs.
Nonsignificant Outcomes for Participants with Mild Cognitive Impairment/Early-Stage Dementia. Of variables with no significant findings, self-esteem (Marshall et al., 2015; Young et al., 2014), self-efficacy (Young et al., 2014), coping self-efficacy (Roberts & Silvero, 2009; Schmitter-Edgecombe & Dyck, 2014), and coping skills (Young et al., 2014) were each tested in at least one RCT, whereas effectiveness of care tasks (Gaugler et al., 2011), knowledge of dementia (Roberts & Silvero, 2009), and psychosocial adjustment to illness (Roberts & Silvero, 2009) were each only tested in a single-group pretest–posttest study.
Care Partners. Coping, Family Support and Communication, Care Preparation, and Task Effectiveness. Care partner coping self-efficacy was evaluated in one RCT and revealed that individuals participating in support groups with education had significant improvement (p < 0.05), whereas those receiving standard care did not experience improvement (Schmitter-Edgecombe & Dyck, 2014). One single-group study reported that care partners' preparation and task effectiveness improved significantly after the support group intervention (Gaugler et al., 2011). Care partners' perceived support was tested in a single-group intervention study and showed considerable improvement, but no significance test was reported due to a small sample (N = 10) (Lu et al., 2013).
Depression, Quality of Life, and Burden. One RCT reported that support groups did not significantly change outcomes for care partners' depression (Schmitter-Edgecombe & Dyck, 2014). Another large RCT reported that care partners' QoL was more likely to improve if they were participants' spouses (p < 0.05) (Logsdon et al., 2010). A 6-month, post-intervention follow-up study reported increased depressive symptoms (p < 0.031), lower QoL (p < 0.038), and decreased care partner burden (p < 0.045) (Joosten-Weyn Banningh et al., 2013).
Nonsignificant Outcomes for Care Partners. Two single-group studies measured care partner burden as an outcome with no significant results (Lu et al., 2013; Roberts & Silvero, 2009). Studies also showed no significant changes in care partners' stress (Gaugler et al., 2011; Logsdon et al., 2010). Based on results from one single-group intervention trial, after support groups with education, care partners' knowledge of dementia and satisfaction with preparation for current and future care were not significantly different (Roberts & Silvero, 2009). Similarly, one single-group intervention study (Lu et al., 2013) and one RCT (Logsdon et al., 2010) reported no notable differences in family communication. In addition, one RCT (N = 58) reported that care partners' health was not significantly changed after a support group with education (Marshall et al., 2015). One study followed up with care partners after support groups and reported feelings of helplessness and acceptance of their loved one's impairment were not significantly changed between post-intervention and 6-month follow up (Joosten-Weyn Banningh et al., 2013).
Support Group Process. Satisfaction and Acceptability With the Intervention. Two single-group studies evaluated participants' with ESD and care partners' satisfaction with support groups and reported high satisfaction (Gaugler et al., 2011; Roberts & Silvero, 2009). One study (N = 63) reported that most participants (83.3%) and care partners (90.6%) would “definitely” recommend the program to others (Gaugler et al., 2011). Similarly, the other study (N = 37) reported that approximately all participants and care partners (97%) found the intervention helpful, and most (63% to 79%) rated the intervention a grade A (Roberts & Silvero, 2009). Another single-group study reported participants and care partners had high acceptability of support groups (Lu et al., 2013).
Overall Benefits and Experience. Three qualitative studies evaluated participants' overall benefit and experience with support groups. One case study reported that through support groups, participants understood dementia more clearly, felt comfortable and supported, and gained kinship through experience sharing (Kjallman Alm, Hellzen, & Norbergh, 2014). However, participants also expressed feeling a lack of belonging and a desire to get to know their peers (Kjallman Alm et al., 2014).
Another case study examined how support groups fostered friendships between individuals with dementia (Ward, Howorth, Wilkinson, Campbell, & Keady, 2011). Factors identified included: getting together, supportive exchanges, shared experience of dementia, shared interests, sense of belonging, social acceptance, and a safe space to talk (Ward et al., 2011). The facilitators also identified the need to step back from the group to more effectively promote discussion among participants. Facilitators suggested some practical tips to facilitate the groups, including providing reminders, arranging rides as needed, providing structured activities in the group, and arranging local resources and events to support participants (Ward et al., 2011). One study also reported that support groups reduced isolation and enhanced participants' social inclusion, as well as their social and emotional well-being (Dow, Haralambous, Hempton, Hunt, & Calleja, 2011).
Characteristics of Participants with Mild Cognitive Impairment/Early-Stage Dementia and Pitfalls for Support Groups. Two qualitative studies explored participants' characteristics and challenges in support groups. One study examined facilitators' experiences in support groups (Anderson, 2011) and reported that participants with MCI/ESD were fragile and became restless and fatigued easily. They also noticed participants' cognitive function began to deteriorate 1 hour into the support group session and, although participants may not have a collective memory of the content in group meetings, after a few sessions they were able to talk and express themselves with ease; they believed the group was a safe place to talk and attending the group improved their relationship with their family (Anderson, 2011). The second study reported that participants with ESD in support groups demonstrated communication difficulties with retrieving words, staying on topic, understanding lengthy and complex conversations, remembering content, and speaking in a circumlocution manner (Goldfein, 2007). Based on these challenges, the authors suggested that facilitators could enhance the effectiveness of support groups by helping participants with word retrieval, paraphrasing, reminders of the conversation topic, use of short sentences, and avoidance of vague words (Goldfein, 2007).