REVIEW ARTICLE

Social support group interventions in people with dementia and mild cognitive impairment: a systematic review of the literature Phuong Leung, Martin Orrell and Vasiliki Orgeta Division of Psychiatry, University College London, London, UK Correspondence to: Dr V. Orgeta, E-mail: [email protected]

Objectives: Despite the large number of studies evaluating social support groups for people with demen-

tia, there are no systematic reviews of current evidence. The aim of this study was to evaluate the effectiveness of social support group interventions for people with dementia and mild cognitive impairment. Methods: A systematic review was performed. We searched electronic databases for randomised controlled trials. Two reviewers worked independently to select trials, extract data and assess risk of bias. Results: A total of 546 studies were identified of which two met the inclusion criteria. We were not able to pool data for further analyses, as the interventions tested in the studies meeting the inclusion criteria were too dissimilar in content. The first trial (n = 136) showed a benefit of early-stage memory loss social support groups for depression and quality of life in people with dementia. The second trial (n = 33) showed that post-treatment self-reported self-esteem was higher in the group receiving a multicomponent intervention of social support compared with that in the no intervention control group. Conclusions: Limited data from two studies suggest that support groups may be of psychological benefit to people with dementia by reducing depression and improving quality of life and self-esteem. These findings need to be viewed in light of the small number, small sample size and heterogeneous characteristics of current trials, indicating that it is difficult to draw any conclusions. More multicentre randomised controlled trials in social support group interventions for people with dementia are needed. Copyright # 2014 John Wiley & Sons, Ltd. Key words: dementia; mild cognitive impairment; social support groups; psychosocial interventions; RCTs History: Received 14 November 2013; Accepted 29 May 2014; Published online 3 July 2014 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/gps.4166

Background It is currently estimated that in the UK alone, 820,000 people are affected by dementia, of which only 46% have a formal diagnosis (Alzheimer’s Disease International, 2011). Many older people have mild cognitive impairment (MCI), a condition of cognitive decline that does not meet criteria for dementia (Petersen et al., 1999; Troyer et al., 2008) but poses a higher risk of developing Alzheimer’s disease (AD) (Petersen, 2003). Cognitive symptoms such as losses in the ability to communicate can hinder people with dementia from participating in social activities (Mason et al., 2005), limiting their access to social support (Waite Copyright # 2014 John Wiley & Sons, Ltd.

et al., 2004). People with dementia can often experience losses related to their individual identity, which are related to a lack of opportunities for expression rather than due to the progress of the disease itself (Sabat and Harre, 1992; Mason et al., 2005). Despite the growing emphasis on the importance of early diagnosis (Goldsilver and Gruneir, 2001), many people with dementia do not have the opportunity to raise their concerns once a diagnosis is made and may feel isolated and stigmatised (Gauthier, 2002; Logsdon et al., 2006; Cantley and Smith, 2007). Often, services for people with dementia focus on later stages of the illness or on carers’ needs, with very few support services developed to meet the support needs of people Int J Geriatr Psychiatry 2015; 30: 1–9

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with dementia early on (Goldsilver and Gruneir, 2001). The National Dementia Strategy ‘Living well with dementia’ recommends provision of early diagnosis and peer support, which should be provided to those affected immediately after a diagnosis has been established (Department of Health, 2009). Social support group interventions for people with dementia often take the form of group discussions or ‘social clubs’ and focus on enhancing friendships and socialisation by incorporating elements such as interactive education seminars (Logsdon et al., 2010). They can offer emotional support and opportunities to solve problems or plan for future living arrangements or other legal matters throughout the course of the disease (Yale, 1999). It has been argued that these types of social interventions may support the psychological needs of people with dementia (Yale, 1995; Mason et al., 2005), by allowing them to address their concerns (LaBarge and Trtanj, 1995) and self-disclose over time (Snyder et al., 1995). Support groups can play a vital role in establishing social networks by building an identity based on social ties with others (Mason et al., 2005). Studies show that older people who receive social support may be less likely to experience cognitive decline, and more likely to maintain their social relationships over time (Yeh and Liu, 2003). This can be important for people with dementia as, once diagnosis has been made, there is a greater focus on the disability associated with the disease rather than on maintained capacity (Goldsilver and Gruneir, 2001). Social support groups therefore can provide crucial follow-up after diagnosis for people with dementia by offering support that is only sparsely available (Yale, 1999). The benefits of social support interventions for carers of people with dementia have been described in a number of studies (Chien et al., 2011), but there is limited evidence of efficacy of support groups for people with dementia. Despite the large-scale evaluative studies demonstrating that social support groups can provide an important forum for socialisation and learning for people with mild to moderate dementia (Snyder et al., 2007), there are no studies that attempt to systematically review available evidence. The aim of this study was to evaluate the effectiveness of social support group interventions in improving well-being for people with dementia and MCI. Methods Criteria for considering studies for this review Types of studies. Studies were included in this review if they fulfilled the following criteria: Copyright # 2014 John Wiley & Sons, Ltd.

P. Leung et al.

• • • • •

were randomised controlled trials (RCTs), including cluster RCTs, included a non-intervention control or comparison group, provided adequate information in terms of results and description of the study (i.e. means, standard deviations (SDs), t-test or F-test, and n-values) and provided separate data on participants with dementia and/or MCI if the study was of a mixed population (e.g. also including older adults with normal cognition). Ongoing studies were identified but were not included in the meta-analysis.

Types of participants. Inclusion criteria for participants

were as follows:





Older adults diagnosed with dementia, AD according to DSM-IV, ICD-10 or comparable and participants with a diagnosis of MCI. Any definition of MCI was acceptable as long as the criteria used were published and included evidence of objective cognitive impairment but no dementia (Petersen et al., 1999; Petersen, 2003). Any setting (e.g. home, community and institution).

Types of interventions. For the purposes of this review, a social support group intervention was defined according to the definition provided by Schmall (1984), specifying as a social support group a treatment programme that provided any of the following: (i) education about dementia or MCI; (ii) mutual/peer support; (iii) education/mutual support; and (iv) opportunities to express feelings and concerns. Examples include support groups that aim towards allowing people with dementia or MCI to gain better understanding of their illness, have their concerns addressed, express feelings, share experiences, offer emotional mutual support and develop their coping strategies. Multicomponent interventions were considered as eligible. Treatments identified as medication were excluded. Control conditions included no treatment (usual care) or a comparison group engaging in nonspecific psychosocial activity (e.g. attention-control, controlling for effects of staff attention or social contact). Comparisons with other therapeutic interventions are not considered in this review. Studies that used combinations of different social support group interventions combined with other non-pharmacological or psychological therapies were included as long as the intervention was based on a social support group model for people with dementia or MCI. Int J Geriatr Psychiatry 2015; 30: 1–9

Social support groups in dementia

Types of outcome measures. Studies were included if

they reported an outcome measure of depression and/or anxiety, quality of life (QoL) or other measures of well-being, measured by a standardised test.

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criteria and one was identified as ongoing. See Figure 1 for a PRISMA flow diagram detailing the search process. Selection of studies

Primary outcomes.



Measures of depression (e.g. Cornell Scale for Depression in Dementia, Hamilton Depression Scale, Beck Depression Inventory and Geriatric Depression Scale (GDS)). Clinician, carer and patient ratings were included.

Secondary outcomes.

• •

Measures of patient QoL, daily activity level (e.g. ADLs) and neuropsychiatric symptoms (e.g. NPI). Caregivers’ QoL or experience of caregiver burden.

Search methods and identification of studies Electronic databases and key articles were searched for RCTs published in English. Searches were carried out in MEDLINE, Embase, Pubmed, PsycINFO, Scopus and The Cochrane Library in order to identify clinical trials. Key words used in the search included people with dementia*, Alzheimer’s*, mild cognitive impairment*, early-stage dementia, early stages of Alzheimer’s disease, support group, supportive group and social support. Relevant papers were scored according to established criteria set by the Cochrane Group. We searched identified citations for additional trials and contacted corresponding authors of identified trials for additional references and unpublished data. We scanned the reference lists of identified publications, and all review papers that were related to social support group interventions in dementia or MCI. Abstracts of the references retrieved by the search were read by two reviewers (P. L. and V. O.) in order to discard those that were not eligible for inclusion. Any disparities were resolved by discussion with the third author in order to arrive at the final list of included studies.

We excluded a total of 28 studies, details and reasons of exclusion can be seen in Table 1. A total of 18 studies did not employ an RCT, and in six of the studies, the intervention did not meet criteria for a social support group intervention or was not primarily aimed at people with dementia. In the remaining four studies, multiple reasons of exclusion applied were the design was not an RCT, and the intervention was not based on a social support group intervention. Two studies met the inclusion criteria for this review: Burgener et al. (2008) and Logsdon et al. (2010). The study of Burgener et al. (2008) was conducted in the USA but did not specify the setting. The study of Logsdon et al. (2010) was also conducted in the USA and recruited patients living in the community.

Results of the search A total of 533 studies were identified through database searching, which was conducted from the period of June 2013 to August 2013. A total of 13 additional studies were identified by the authors via other sources. After removal of duplicates and irrelevant studies, 54 studies were retrieved via full text. Of these 54 references, 23 were excluded at this stage as not relevant, leaving 31 full text articles to be fully assessed for eligibility. Of these, 28 were excluded, two met the inclusion Copyright # 2014 John Wiley & Sons, Ltd.

Figure 1 Study flow diagram.

Int J Geriatr Psychiatry 2015; 30: 1–9

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P. Leung et al.

Table 1 Characteristics of excluded studies Study 1

Reason for exclusion

2 3 4

Joosten-Weyn Banningh et al., 2011 Brooker et al., 2011 Eloniemi-Sulkava et al., 2001 Gaugler et al., 2011

5 6 7 8

Goldsilver and Gruneir, 2001 Karlin, 1999 Laakkonen et al., 2012 LaBarge and Trtanj, 1995

9

LaBarge et al., 1998

10

Marshall et al., 2005

11 12 13 14

Mason et al., 2005 Oppikofer et al., 2002 Oppikofer et al., 2010 Pratt et al., 2005

15

Roberts and Silverio, 2009

16 17

Snyder et al., 1995 Snyder et al., 2007

18

Sorensen et al., 2008

19

Villars, 2013

20 21 22 23 24 25

Wang and Chien, 2011 Ward et al., 2012 Cappeliez et al., 1989 Yale, 1999 Yale and Kaplan, 2006 Zarit et al., 2004

26

McAfee et al., 1989

27 28

Yeh et al., 2001 Trabert, 1996

Not an RCT, intervention was group therapy based on CBT combined with psychoeducation and memory rehabilitation in MCI Intervention included staff training and provision of activities Social support group meetings primarily aimed at carers Not an RCT, pre-/post-evaluation of social support groups for people with dementia, no control comparison group Not an RCT, evaluation of carers’ views of benefits of social support groups for people with dementia Not an RCT, social support group meetings primarily aimed at carers Intervention is self-management (knowledge on dementia, active lifestyle and nutrition) Not an RCT, qualitative study of social support groups for people with dementia and measurement of satisfaction with the intervention A qualitative study of social support groups for people with dementia exploring feelings and concerns discussed by group members Not an RCT, pre-/post-evaluation of social support groups for people with dementia, qualitative analysis of group sessions Not an RCT, qualitative and observational data of social support groups for people with dementia Not an RCT, article in German, intervention incorporated scheduled visits only Not an RCT, article in German, intervention incorporated scheduled visits only Commentary on the development of a user-led model of a social support intervention for people with dementia Not an RCT, pre-/post-evaluation of social support groups for people with dementia, no control comparison group Not an RCT, evaluative survey of social support groups for people with early dementia Not an RCT, evaluative survey of social support groups for people with mild to moderate Alzheimer’s disease Qualitative study investigating the experiences of people with dementia participating in a counselling intervention Ongoing trial, educational intervention of consultation incorporating knowledge of the disease and treatments Social support group meetings primarily aimed at carers Case studies of people with dementia taking part in a social support group intervention Clinical comments on social support group interventions for people with dementia Qualitative review of research on social support group interventions for people with dementia Commentary on delivery of social support groups for people with dementia Qualitative study investigating the experiences of people with dementia participating in a social support group intervention Not an RCT, pre-/post-evaluation of social support groups for people with dementia, no control comparison group Case vignettes of people with dementia taking part in a social support group intervention Case vignettes of people with dementia taking part in a social support group intervention

RCT, randomised controlled trial; CBT, cognitive behavioural therapy; MCI, mild cognitive impairment.

Ongoing trials

The ongoing trial by Logsdon (2013) investigates the effects of a modified version of the early-stage memory loss model (4-week format), to a usual care control group, with primary outcomes at the 1-month assessment social activity participation and family communication, and primary outcomes at 4-month follow-up QoL and depression.

resolved through discussion. The extracted information included data on methods, participants, interventions, outcomes and results. In relation to methods used, data were extracted on methodologies used for randomisation. Items related to participant characteristics were number and age of participants. Data relevant to interventions used were specifics of duration, intensity, type and frequency. Participants

Data extraction and management Two reviewers (P. L. and V. O.) extracted data independently using a standardised data extraction form, which was piloted before use, and discrepancies were Copyright # 2014 John Wiley & Sons, Ltd.

In Burgener et al. (2008), all participants were diagnosed with dementia, with a score of

Social support group interventions in people with dementia and mild cognitive impairment: a systematic review of the literature.

Despite the large number of studies evaluating social support groups for people with dementia, there are no systematic reviews of current evidence. Th...
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