Research in Gerontological Nursing

State of the Science 

Effects of Support Groups for Individuals with Early-Stage Dementia and Mild Cognitive Impairment: An Integrative Review

Ying-Ling Jao, PhD, RN; Fayron Epps, PhD, RN; Caroline McDermott, BSN, RN; Karen M. Rose, PhD, RN, FGSA, FAAN; Janet K. Specht, PhD, RN, FGSA, FAAN

Abstract

Support groups have demonstrated promising outcomes for individuals with mild cognitive impairment (MCI) and early-stage dementia (ESD) in previous literature reviews. However, evidence has not been updated since 2007. The current review aimed to update current evidence on the use and effects of support groups for individuals with MCI and ESD and their care partners. A literature search was conducted in seven databases and 18 eligible research articles were retrieved. Support groups showed positive impacts on participant acceptance of cognitive impairment; performance and satisfaction of meaningful activity; resilience; self-help; and care partner coping self-efficacy, perceived support, and preparation and task effectiveness. Findings also revealed that support groups were well accepted by participants and care partners. Few studies included ethnic diversity, limiting the generalizability of findings. Further large-scale studies are needed to confirm the effects of support groups for individuals with MCI and ESD in all populations.

[Res Gerontol Nurs. 2017; 10(1):35–51.]

Abstract

Support groups have demonstrated promising outcomes for individuals with mild cognitive impairment (MCI) and early-stage dementia (ESD) in previous literature reviews. However, evidence has not been updated since 2007. The current review aimed to update current evidence on the use and effects of support groups for individuals with MCI and ESD and their care partners. A literature search was conducted in seven databases and 18 eligible research articles were retrieved. Support groups showed positive impacts on participant acceptance of cognitive impairment; performance and satisfaction of meaningful activity; resilience; self-help; and care partner coping self-efficacy, perceived support, and preparation and task effectiveness. Findings also revealed that support groups were well accepted by participants and care partners. Few studies included ethnic diversity, limiting the generalizability of findings. Further large-scale studies are needed to confirm the effects of support groups for individuals with MCI and ESD in all populations.

[Res Gerontol Nurs. 2017; 10(1):35–51.]

Mild cognitive impairment (MCI) is defined as modest but measurable cognitive decline in one or more cognitive domains (e.g., complex attention, executive function, learning and memory, language, perceptual–motor, social cognition) without interference with independence in daily activities (American Psychiatric Association [APA], 2013). Dementia has similar aspects of cognitive decline, but the decline is more severe and begins to interfere with individuals' independence in everyday life (APA, 2013). In the early stages of dementia, individuals' cognitive impairment may not be much different from MCI and they are typically still able to work, function independently, and complete complex activities, such as managing medications and paying bills; however, these tasks require greater mental effort (Alzheimer's Association, 2015).

Receiving a diagnosis of any type of cognitive impairment is a life-altering experience for individuals and their families (Plassman et al., 2007). Cognitive impairment and possible behavioral symptoms occurring in early-stage dementia (ESD) affect an individual physically and psychologically, and make it challenging to maintain cognitive function, self-care ability, and quality of life. An early diagnosis allows individuals and their families the opportunity to live well with the disease for as long as possible (Logsdon et al., 2010). It is important to provide support for individuals with MCI/ESD to manage their fears, worries, and psychological distress, and help them cope and plan ahead, as well as assist with practical and financial concerns they may encounter as dementia progresses (Goldsilver & Gruneir, 2001). Moreover, a recent study revealed that family caregivers of individuals with dementia expressed the need to learn caregiving and approaches to manage their loved one's behavioral changes, as well as their own needs regarding their new responsibilities, emotions, and relationship changes with their loved ones (Steiner, Pierce, & Salvador, 2015). Therefore, individuals with MCI/ESD and their families should focus on living meaningful lives while learning to cope with the diagnosis. The literature supports the overlap and controversy that exist in the clinical manifestations of MCI, pre-dementia, and ESD; therefore, these terms have been combined and represented as MCI and ESD (or MCI/ESD) in the current review (Albert et al., 2011; Jack et al., 2011; McKhann et al., 2011; Morris, 2012; Sperling et al., 2011).

Support groups are described as a form of group intervention that offers emotional support, educational seminars, and/or opportunities to interact socially and discuss relevant issues across the course of dementia (Yale, 1999). Support groups are designed for individuals with dementia, their families, or both to meet on a regular basis, typically with a professional facilitator (Toms, Clare, Nixon, & Quinn, 2015). Support groups are a common intervention provided for individuals with MCI/ESD (Toms et al., 2015).

An increasing number of studies are testing the effects of support groups for MCI/ESD; however, syntheses on support groups, specifically for this population, have not been updated since a 2007 white paper by a panel of experts (Burgener et al., 2007). The purpose of the current integrative review was to synthesize the evidence of support groups for individuals with MCI/ESD alone or with their families. The current review aimed to update the evidence and comprehensively explore the effects of support groups and relevant factors associated with support groups for this population.

Method

A systematic literature search was conducted using PubMed, CINAHL, AgeLine, Cochrane Library, PsycINFO, ProQuest, and Scopus. Search terms included: (dementia OR Alzheimer* OR “mild cognitive impairment”) AND (“support group” OR “nonpharmacological intervention” OR psychotherapy). The search was limited to research articles that reported studies about support groups for MCI and/or ESD, and were written in English and published between January 17, 2007 and December 31, 2015.

The current review evaluated research articles that studied support groups for individuals with MCI/ESD or support groups for individuals with MCI/ESD and their care partners. In the current article, care partners are broadly regarded as family caregivers, family members, significant others, and friends. Research studies included quantitative and qualitative methods. For the purposes of the current review, support group was defined as a group treatment program that provided any of the following: (a) emotional support (opportunities to express feelings and concerns), (b) peer support, (c) education about MCI or dementia, or (d) a combination of these approaches (Schmall, 1984). To collect all research evidence available in the literature, studies were not limited to particular types of research design or study outcomes. Using this approach, the current review aimed to comprehensively explore the effects of support groups and relevant factors associated with support groups for this population.

Studies were excluded if they involved support groups for care partners only or for individuals with moderate to severe dementia or across multiple stages of dementia without reporting separate results for MCI or ESD, and interventions designed to target specific cognitive functions or neurobehavioral symptoms.

The initial search resulted in a total of 7,159 articles after the removal of duplicates (Figure). Two pairs of reviewers (Y.-L.J. and C.M., and F.E. and J.K.S.) worked independently to assess all titles and/or abstracts. Full text of the articles was retrieved for in-depth review as necessary. Two pairs of reviewers (Y.-L.J. and C.M., and F.E. and J.K.S.) screened all potential articles and determined the eligibility of each through discussion and consensus. The selection process yielded a total of 18 eligible research articles. Next, four reviewers (Y.-L.J., C.M., F.E., J.K.S.) extracted data independently using narrative analysis to summarize all relevant information from each study. Information gathered included study characteristics, study results, and levels of evidence of each study. Discrepancies were resolved through discussion.


PRISMA flowchart of included articles.
Note. ESD = early-stage dementia; MCI = mild cognitive impairment.

Figure.

PRISMA flowchart of included articles.

Note. ESD = early-stage dementia; MCI = mild cognitive impairment.

The studies were then assessed for quality using Melnyk's Level of Evidence (Melnyk & Fineout-Overholt, 2011). Two pairs of reviewers (Y.-L.J. and C.M., and F.E. and J.K.S.) evaluated each article's quality independently and any disagreements were discussed and brought to the group to reach a consensus. Extracted data and levels of evidence are shown in the Table. For all eligible studies, study characteristics, support group modalities, outcome variables, and the results of support groups were synthesized and discussed.


Matrix of Selected Research Articles
Matrix of Selected Research Articles
Matrix of Selected Research Articles
Matrix of Selected Research Articles
Matrix of Selected Research Articles
Matrix of Selected Research Articles
Matrix of Selected Research Articles

Table:

Matrix of Selected Research Articles

Results

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 Characteristics

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.

Study Findings

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).

Discussion

Support Groups for Individuals with Mild Cognitive Impairment/Early-Stage Dementia

The current review suggested that support groups are likely to benefit participants' acceptance of MCI and performance and satisfaction of meaningful activities. According to evidence from qualitative studies, support groups enhance participants' resilience and self-help ability, but this evidence may need to be confirmed in quantitative studies. Support groups showed mixed results regarding participants' ADLs and showed no difference in their health-related QoL, self-efficacy, coping self-efficacy, coping skills, effectiveness of care tasks, knowledge of dementia, self-esteem, and psychosocial adjustment to illness. These outcomes must be established in large RCTs.

In comparing different support group approaches on participant outcomes, support groups with education tended to improve memory for individuals with MCI but not cognitive function for individuals with ESD. A small non-RCT directly compared the effects between emotional and educational support groups and reported that participants with ESD in the educational support group showed higher levels of depression and anxiety than those in the emotional support group (Cheston & Jones, 2009), suggesting it is beneficial to include emotional support in educational support groups. Another qualitative study evaluated virtual support groups with positive outcomes (Clare et al., 2008). These findings and approaches may need to be confirmed in larger studies to guide future practice.

Support Groups for Care Partners

The current review revealed that support groups are likely to benefit care partners' coping self-efficacy, perceived support, and preparation and task effectiveness. Support groups likely do not benefit care partners' stress and QoL. No significant findings were reported for care partners' health, communication, knowledge of dementia, burden, depression, and preparation for current and future care. These findings must be validated in large-scale studies.

The current review's findings are consistent with those of Steiner et al. (2015), who reported that support groups help care partners face caregiving challenges and provide them with emotional support, as well as those of Kitwood (2006), who suggested allowing the expression of emotions and feelings will significantly impact the effectiveness of support groups for individuals with MCI/ESD.

Support Group Process

The current review revealed that individuals with MCI/ESD participating in support groups tended to have cognitive and communication challenges and may need facilitators' assistance. Emotional support and opportunities to express feelings and gain a sense of belonging are key needs of individuals with MCI/ESD. Based on qualitative study findings, support groups help foster friendships and promote social and emotional support. Ultimately, care partners and individuals with MCI/ESD were satisfied with the support groups and found them to be acceptable interventions.

Updated Evidence Since Previous Review

In the previous white paper examining support groups as an intervention, the cutoff used to define level of cognitive impairment was a Mini-Mental State Examination score of >25, indicating mild-/early-stage dementia for the study samples (Burgener et al., 2007). Since that time, the updated fifth edition of the Diagnostic and Statistical Manual of Mental Disorders now includes a subsection entitled “Neurocognitive Disorders,” which replaces the fourth edition's category of “Delirium, Dementia, and Amnestic and Other Cognitive Disorders” (APA, 2013). In addition, more precise criteria for the diagnosis of MCI did not exist at the time of the original white paper (Albert et al., 2011).

It is reasonable to expect that the sample of studies from the original white paper included individuals with MCI but were undiagnosed. As such, it is impossible to ascertain how this lack of diagnosis may have influenced the results of the previous paper, as it is now known that not all individuals with MCI transition to Alzheimer's disease (Espinosa et al., 2013). In the future, comparing individuals with MCI (all forms) to those with ESD may provide additional insights into the efficacy of support group interventions.

Strengths and Limitations

Limitations

The current review had some limitations. One limitation associated with the review process was the exclusion of non-English language articles, which may limit the extent to which the current literature base on this topic can be assessed. A major limitation was the scarce amount of large RCTs investigating support groups. Studies on this topic predominantly had small samples, poor control, and/or qualitative design; only two studies were RCTs with powered or relatively large samples (N > 100). In addition, the outcome variables tested were widely different across studies and most were only tested in one or two small sample studies. These design weaknesses limit the power to detect the impact of the intervention and generate lower levels of evidence. The smaller samples may explain the mixed or nonsignificant results. In addition, the homogeneous ethnicity of the samples limits the generalization to non-Caucasian populations. Another limitation is the exclusion of studies testing support groups as part of multimodal interventions. Finally, several articles selected did not clearly describe their support group process or fully report findings for all outcome variables. The insufficiently detailed reports made data extraction a challenge and limited the capacity to compare different forms of support groups.

Methodological Strengths

The current review included all types of original studies (e.g., RCTs, non-RCTs, single-group intervention studies, descriptive studies, qualitative studies). All types were included to address the need to expand review criteria from solely RCTs for nonpharmacological interventions in dementia, which was recently proposed by a panel of experts in the field (Cohen-Mansfield et al., 2014). Given that well-designed RCTs on this topic are costly and thus can only be conducted in large-budget studies (which are not typical for nonpharmacological studies), only including RCTs results in poor use and comprehensive understanding of the literature (Cohen-Mansfield et al., 2014; Woods, 2003).

Although RCTs are generally considered the most ideal design for intervention research, other types of research are often more feasible, as well as representative and generalizable, in the real world for nonpharmacological interventions in dementia (Cohen-Mansfield et al., 2014). Studies other than RCTs can add valuable and timely knowledge about interventions, including more individualized and complex outcomes from qualitative studies (Cohen-Mansfield et al., 2014; Woods, 2003). Using this inclusive approach, the amount of eligible articles increased from four RCTs to 18 research articles. Narrative results on the use and implementation of support groups were also included to better understand this intervention's applicability in the real world. In addition, the level of evidence for every research article was distinguished, which allowed for the use of all current research evidence in the literature while maintaining the rigor of the review.

Implications

Implications for Practice

Based on the findings from the current integrative review, the following are considered best practices and recommendations for clinical practice:

  • Support groups for individuals with MCI/ESD are commonly offered for 60 to 120 minutes for at least 10 weeks. Support groups typically involve some level of emotional and peer support.
  • Individuals with MCI/ESD often experience communication challenges. Therefore, they may need assistance during support group sessions.
  • Emotional support and opportunities to express feelings and gain a sense of belonging are key needs of individuals with MCI/ESD and can be affected positively by support groups.
  • It is beneficial to help each participant establish a network of support that is sustained beyond formal group meetings.
  • Providing education in support groups may require careful consideration. Inappropriate education may not benefit participant knowledge and possibly result in higher anxiety and depression for individuals with MCI/ESD.
  • Support groups may benefit individuals' with MCI/ESD acceptance of cognitive impairment, performance and satisfaction of meaningful activities, resilience, and self-help.
  • Support groups may benefit care partner coping self-efficacy, perceived support, and preparation and task effectiveness.
  • Support groups are well accepted for individuals with MCI/ESD and their care partners.

Implications for Research

The current review noted that evidence on support groups for individuals with MCI/ESD is insufficient to draw solid conclusions. However, the review demonstrated many positive outcomes for the offering of support groups for individuals with MCI/ESD. Additional research on this topic is needed in several areas. First, this review found that several outcome variables were only tested in one or two small-scale studies and showed mixed or nonsignificant results. Additional large-scale RCTs are needed to confirm the effects of support groups on these variables, including depression, QoL, coping, effectiveness of care tasks, knowledge of dementia, and self-esteem.

Second, it is necessary that future research further examines the modalities of support groups, including the impact of educational support for individuals at different stages of cognitive impairment. The current review showed that support groups with education did not improve knowledge of dementia for participants and their care partners.

Furthermore, the current review showed that individuals with ESD attending educational support groups showed higher depression and anxiety, whereas those attending emotional support groups showed lower depression and anxiety after intervention (Cheston & Jones, 2009). Although effects between two groups were not significantly different after controlling individuals' baseline affect, this finding highlights that educational support may potentially result in negative affect. Given that the study by Cheston and Jones (2009) had a small sample size (N = 17), it would be necessary to duplicate these results in a large-scale study. One study (Schmitter-Edgecombe & Dyck, 2014) also showed that support groups with education improved individuals' with MCI cognitive function, but another study (Marshall et al., 2015) showed that individuals' with ESD cognitive function did not improve. It is important to identify the appropriate materials for education and target the appropriate population to maximize educational benefits.

Other modality topics of support groups worth further testing include virtual support groups and group facilitators. The current review identified one virtual support group in a qualitative study showing some positive outcomes (Clare et al., 2008). Because many individuals with MCI/ESD are still working and performing their daily duties, virtual support groups have the potential to be more accessible for this population and their care partners. However, how acceptable and feasible these groups are and whether support groups without face-to-face interaction are effective remains unknown. Another support group modality that might be worth exploring is peer-led support groups. It would be beneficial to know if an individual with MCI/ESD prefers receiving support from a peer with similar experiences or from a trained clinician with no lived experience.

Third, the inclusion of more minority ethnic group participants is necessary. The current review found limited diversity in the racial makeup of support group participants in the 18 studies. Recognizing that African American and Hispanic individuals have a higher incidence of having a form of dementia in comparison to Caucasian individuals (Alzheimer's Association, 2015; Steenland, Goldstein, Levey, & Wharton, 2015) supports the need to address health disparities associated with cognitive impairment in minority ethnic groups and their use of support groups in the United States. Taking into consideration the cultural background of these groups, it is not well understood whether support groups will benefit minority ethnic groups. An international study exploring Black minority ethnic groups found that this population had limited access to dementia support and access barriers included the presence of extended families, misconception of dementia, and stigma (Moriarty, Sharif, & Robinson, 2011). Therefore, additional efforts are needed to recruit minority and ethnically diverse individuals in support group studies and develop social groups with culturally sensitive approaches (Logsdon et al., 2010).

In addition, gender-specific coping patterns should be further explored. One study in the current review identified women as having decreased feelings of helplessness after attending group therapy sessions (Joosten-Weyn Banningh et al., 2011). This phenomenon must be examined further to be fully understood. Furthermore, future reviews may expand to include multimodal interventions, such as exercise and cognitive training (which are linked to participation in support groups), which may better serve this population and their care partners (Burgener et al., 2007), and also strengthen the effects of support groups.

Finally, longitudinal studies of support groups are necessary. Further evidence is needed regarding the long-term effects of support groups and how to form networks to sustain peer contacts when the support group no longer meets. These research areas could maximize the long-term effects of support groups, but may prove to be challenging as individuals' cognitive impairment worsens over time.

Conclusion

Positive effects of support groups on care partners have been well established with adequate evidence, but the effects of support groups on individuals with MCI/ESD, who face a unique set of challenges, are not well studied. The current review aimed to update current evidence from 2007–2015 on the use and effects of support groups on individuals with MCI/ESD and their care partners. Although the evidence is still inconclusive, the current study provided updated evidence on the positive impact of support groups for individuals with MCI/ESD and their care partners, and the findings will help guide clinical practice and future research.

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Matrix of Selected Research Articles

ArticleLevel of EvidenceSampleMethodMeasuresOutcomes
Quantitative Studies
Cheston & Jones (2009)3Participants with ESD (N = 17)Non-RCT

Intervention: emotional support

Control: educational support

Cornell Scale for Depression in Dementia

Rating of anxiety in dementia

Brief assessment schedule depression cards

Beck Anxiety Inventory

Significant interaction between intervention and levels of depression (p = 0.013) and borderline significant interaction between intervention and levels of anxiety (p = 0.05)
Gaugler et al. (2011)3Participants with ESD (n = 63); care partners (n = 61)Single-group pretest–posttest intervention

Intervention: support with education

Participants

Rating of effectiveness

Satisfaction

GDS

IADL dependence

Care partners

Stress

Effectiveness

GDS

Preparation checklist

Anticipation of care

Satisfaction

Participants

Significant: IADL dependency increased (p = 0.04)

Nonsignificant: effectiveness and depressive symptoms

Care partners

Significant: increased effectiveness (p = 0.02), increased preparation activities (p < 0.001), increased preparation for care (p = 0.04)

Nonsignificant: depressive symptoms, stress, satisfaction with care needs, and preparation for future care needs

Support group process

83.3% of participants and 90.6% of care partners would “definitely” recommend the intervention

Joosten-Weyn Banningh et al. (2011)3Participants with MCI, care partners (N = 87 dyads)Non-RCT

Intervention: support with education

Control: wait list

Participants

Acceptance and Helplessness of the Illness Cognition Questionnaire SF-36

GDS

Participants

Significant: increased acceptance (p = 0.034) and females reported larger decrease in levels of helplessness post-intervention than males (p = 0.029)

Nonsignificant: distress and general well-being

Joosten-Weyn Banningh et al. (2013)4Participants with MCI, care partners (N = 47 dyads)Cohort

Intervention: support with education

Participants

GDS-15

SF-36

Acceptance and Helplessness of the Illness Cognition Questionnaire

Sense of Competence Questionnaire

IQCODE

Care partners

GDS-15

SF-36

Acceptance and Helplessness of the Illness Cognition Questionnaire

Sense of Competence Questionnaire

Participants

Significant: decreased general well-being (p = 0.045), increased helplessness (p = 0.05), and increased cognitive deterioration (p = 0.001)

Nonsignificant: depressive symptoms and acceptance

Care partners

Significant: increased depressive symptoms (p = 0.031), decreased general well-being (p = 0.038), and decreased burden (p = 0.045)

Nonsignificant: acceptance and helplessness

Logsdon et al. (2010)2Participants with ESD, care partners (N = 142 dyads)RCT

Intervention: support with education

Control: educational written materials

Participants

QoL-AD

GDS

SF-36

Care partners

QoL-AD

GDS

Family Assessment Measure

Perceived Stress Scale

Participants

Significant: improved QoL (p < 0.001) and mood (p < 0.01), but control decreased

Nonsignificant: health-related QoL

Care partners

Nonsignificant: QoL, mood, perceived stress, and communication

Lu, Haase, & Weaver (2013)3Participants with MCI, care partners (N = 10 dyads)Single-group pretest–posttest intervention

Intervention: support without education

Participants

Dementia Deficits Scale

Canadian Occupational Performance Measure

Communication and Affective Expression subscales

ADL Scale

Patient Health Questionnaire

Controlled Oral Word Association

Trail Making Test A & B

General Health Subscale

QoL-AD

Satisfaction

Care partners

Caregiving Burden Scale

Dementia Deficits Scale

Satisfaction

Participants

Significant: improved performance and satisfaction with meaningful activities

Nonsignificant: depression, QoL, cognitive functioning, and ADLs

Care partners

Nonsignificant: burden, perceived support, and communication

Support group process:

Mean acceptability was 4.55/5 (participants) and 4.33/5 (care partners). Dyads planned to continue program use and would recommend the program to others.

Marshall et al. (2015)2Participants with ESD, care partners (N = 58 dyads)RCT

Intervention: support with education

Control: usual care

Participants

QoL-AD

Cornell Scale for Depression in Dementia

Rosenberg Self-Esteem Scale

MMSE

Care partners

General Health Questionnaire

Participants

Nonsignificant: QoL, mood, self-esteem, and cognitive change

Care partners

Nonsignificant: health

Roberts & Silvero (2009)3Participants with ESD, care partners (N = 37 dyads)Single-group pretest–posttest intervention

Intervention: support with education

Participants

Satisfaction

Family Knowledge of Alzheimer's Test

Merluzzi's Measure of Illness Coping Self-Efficacy

Care partners

Satisfaction

Family Knowledge of Alzheimer's Test

Merluzzi's Measure of Illness Coping Self-Efficacy

Psychosocial Adjustment to Illness Scale

MBRC Care Partner Strain Instrument

Participants

Significant: at 3-month follow up, participants felt in control of disease (66%)

Nonsignificant: coping self-efficacy and knowledge about disease

Care partners

Significant: at 3-month follow up, care partners were more accepting of their partner's dementia diagnosis (69%)

Nonsignificant: coping self-efficacy, psychosocial adjustment, knowledge about disease, and care partner strain

Support group process

Participants reported information was easy to understand (86%) and felt more supported while coping with the disease (76%); 63% of individuals with ESD and 79% of care partners gave it a letter grade A. Care partners were more likely than participants to report the series made them feel more supported (p = 0.05).

Schmitter-Edgecombe & Dyck (2014)2Participants with MCI, care partners (N = 23 dyads)RCT

Intervention: support with education

Control: standard care

Participants

Medication Management Ability Assessment

Bill Paying Subtest

ADL Prevention Instrument

Coping Self-Efficacy Scale

QoL-AD

GDS

RBMT-II

RBANS

Care partners

QoL-AD

GDS

ADL Prevention Instrument

Coping Self-Efficacy Scale

Participants

Significant: intervention group performed significantly better on RBMT-II post-treatment (p = 0.01), RBANS immediate memory (p = 0.001), and delayed memory (p = 0.005)

Nonsignificant: ADLs, QoL, coping, and depressive symptoms

Care partners

Significant: intervention group had improved self-coping strategies (p = 0.05)

Nonsignificant: QoL and depressive symptoms

Sims & McCrum (2012)6Participants with ESD, care partners (N = 8 dyads)Descriptive

Intervention: support without education

Participants

Psychotherapeutic Change

Participants

After support groups, participants demonstrated improved understanding (54% increase) and insight of their disease process (14% increase), and capacity to apply and work through their perceived problems (27% increase)

Young, Kwok, & Ng (2014)2Participants with ESD (N = 39)RCT

Intervention: support with education

Control: standardized educational written material

GDS–Chinese version

Rosenberg Self-Esteem Scale–Chinese version

General Self-Efficacy Scale–Chinese version

Index for Managing Memory Loss

Significant: intervention group had a reduction in depressive mood (p = 0.017)

Nonsignificant: self-esteem, self-efficacy, and coping skills; reduction in depressive mood approached significance in control group (p = 0.055)

Anderson (2011)6Participants with ESD (N = 5)Narrative

Intervention: support without education

NoneParticipants

Increased acceptance of diagnosis

Support group process

Dynamics of a fragile group, use of collective un-conscious, group's subjective experience, conductor's countertransference, and risks and benefits of analysis

Clare, Rowlands, & Quin (2008)6Participants with ESD (N = 7)Interpretative phenomenology

Intervention: support without education

None

Dementia land (i.e., a theme yielded to mean an unfamiliar and different territory), collective strength, valuable contributing member of society, and life after diagnosis

Dow, Haralambous, Hempton, Hunt, & Calleja (2011)6Participants with ESD, care partners

Focus group (n = 37)

Dyads (n = 139)

Staff (n = 8)

Providers (n = 24)

Focus groups

Intervention: support with education

NoneSupport group process

Participant themes: enjoyment/social inclusion, peer support, education/information, staff consultation, attendance criteria clarification, meeting frequency, and service planning/evaluation

Staff believed attending the support group: improved social/emotional states, prevented social isolation, reduced care stress, and provided a safe environment

Providers reported: limited awareness of memory lane cafés, with those knowing about them identifying them as beneficial

Goldfein (2007)6Participants with ESD (N = 9)Narrative

Intervention: support with education

NoneSupport group process

Communication changes observed were word-finding difficulties, circumlocutions, comprehension difficulties, and repetitiveness. Facilitator communication was sometimes too vague, lengthy, and complex and difficult to understand.

Kjallman, Hellzen, & Norbergh (2014)6Participants with ESD, care partners (N = 4 dyads)Case study

Intervention: support with education

NoneSupport group process

Improved knowledge about the disease, sense of comfort and support, kinship through shared experiences, and longing for kinship

Matchar & Gwyther (2014)6Participants with ESD, care partners (N = 35 dyads)Narrative

Intervention: support without education

NoneParticipants

Support groups enabled individuals to overcome adversities through resilience, share uncertainties and frustrations, learn to accept help, use humor and hope as coping mechanisms, and provide comfort and support through maintaining regular connections. Suggested key resource for developing resilience in participants is informal support from family and friends.

Ward, Howorth, Wilkinson, Campbell, & Keady (2011)6Participants with ESD (N = 1 group)Case study

Intervention: support without education

NoneSupport group process

Participating in a support group fostered friendships among participants and enabled them to share experiences, interests, social acceptance, a sense of belonging, and a safe space to talk. The facilitator was seen as an advocate and suggested practical tips to facilitate the groups.

Authors

Dr. Jao is Assistant Professor, and Ms. McDermott is PhD Student, Pennsylvania State University, University Park, Pennsylvania; Dr. Epps is Assistant Professor, Georgia State University, Atlanta, Georgia; Dr. Rose is Associate Professor, University of Virginia, Charlottesville, Virginia; and Dr. Specht is Professor Emeritus, University of Iowa, Iowa City, Iowa.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

The authors thank Madeline Verbeke for her assistance with the preparation of this article.

Address correspondence to Ying-Ling Jao, PhD, RN, Assistant Professor, Pennsylvania State University, 201 Nursing Sciences Building, University Park, PA 16801; e-mail: yuj15@psu.edu.

Received: March 04, 2016
Accepted: June 23, 2016
Posted Online: September 23, 2016

10.3928/19404921-20160726-01

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