Managing behavioural and psychological symptoms in community dwelling older people with dementia: 1. A systematic review of the effectiveness of interventions

Selection criteria

We included English language studies that investigated BPSD management in community-dwelling individuals and excluded studies set in long-term care facilities.

Search strategy

Studies were identified by computerised searches of PubMed, Embase, CINAHL, PsycInfo, AMED, HMIC, BNI, HEALTH BUSINESS ELITE, Scopus and Web of Knowledge (Web of Science). In addition, we searched the Cochrane Library (including Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Health Technology Assessment, Economic, Systematic reviews, Trials, Method, Techno). We carried out lateral searches (checking reference lists and citation searches) and screened several reviews to identify other relevant studies. An example search query from PubMed is presented in Box 1. Searches were conducted in October/November 2012 from year 2000, with two updates (March 2015 and October 2016). The broad mapping informed the selection of studies for our in-depth systematic review, through applying additional criteria and assessing the focus of complex interventions and BPSD relevant outcomes.

Screening for inclusion in systematic review

All records from searches were retrieved in Endnote and screened for potential inclusion; 10% were independently screened by two reviewers. Hard copies of potentially relevant papers were further screened, with 20% screened independently. Studies included were RCTs describing interventions for BPSD and reporting one or more of the following as main outcomes: BPSD and QoL for people with dementia, and carer burden/strain, distress, psychological health and QoL for carers. Secondary outcomes included resource use and costs and processes of care. Uncertainties were resolved by consensus in discussion by the research team.

Data extraction and quality assessment

All quantitative data were extracted into an Excel database, using a pre-piloted data extraction tool developed in consultation with our study’s lay advisers. This included participant characteristics, intervention details, providers, clinical outcomes, resource use, costs (where available) and effect sizes. Key outcome and descriptive data for reviewing economic implications were extracted independently (HG). Data were extracted by one reviewer, with 70% extracted independently by two reviewers for in-depth systematic review. Quality assessment was conducted on all included studies independently by two reviewers using the Cochrane risk of bias tool for RCTs (Higgins & Green, 2011). Categories for seven types of non-pharmacological interventions were based on a broad classification used in the earlier review (Dickson et al., 2012), namely: behavioural, education and training, environmental, multi-component, organisational, physical and structured and support types of interventions.

Evidence mapping

We retrieved 17,871 de-duplicated records. Following screening, 301 records were selected (all study types) for an initial mapping exercise (Trivedi et al., 2015). Records retrieved and screened for final inclusion of quantitative studies are shown in Figure 1. Non-pharmacological interventions identified were heterogeneous, with over 50 different formats of varying content and duration. A range of different terminologies was used to describe BPSD, and the evaluations were based on a variety of different outcomes and instruments. The interventions targeted people living with dementia and family carers, were delivered at home or in community or out-patient settings and were often multi-faceted and multidisciplinary. Many studies addressed symptoms as one component of a complex intervention for dementia (including behavioural management, various types of support, education and training) whilst others did not specifically target BPSD but reported BPSD-relevant findings as secondary outcomes. Findings from the analysis of 48 RCTs where BPSD management was one of the components of the intervention and reported BPSD as either a primary or secondary outcome are reported in this paper.

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Figure 1.

PRISMA flow diagram of RCT study selection process.

Box 1

Example of search query.

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PubMed searches*: (dementia[ti] or Alzheimer*[ti]) AND (activities of daily living OR acupuncture OR animal-assisted OR aromatherapy OR art therapy OR Behavior Therapy OR biofeedback OR Breathing Exercises OR calligraphy OR cognitive-behavior OR cognitive therapy OR cognitive stimulation OR Combined Modality Therapy OR complementary therapies OR counseling OR creative therapy OR dance OR dance therapy OR day care OR Diet, Sodium-Restricted OR Diet, reducing OR Diet therapy OR domestic OR Electric Countershock OR Electric Stimulation Therapy OR electroconvulsive OR exercise OR exercise therapy OR family therapy OR group therapy OR hypnosis OR integrative OR interview therapy OR Life style OR massage OR music therapy OR occupational therapy OR Patient Education OR Phototherapy OR Physical Fitness OR physical therapy modalities OR physiotherapy OR psychotherapy OR psychosocial OR psycholog* OR complementary OR reality orientation OR recreation therapy OR rehabilitation OR relaxation OR relaxation therapy OR reminiscence OR respite care OR Sensory art therapies OR Self Care OR sleep therapy OR support OR Transcutaneous Electric Nerve Stimulation OR walking OR non-pharmacolog* OR nonpharmacolog* OR non-drug OR nondrug OR multicomponent OR multifaceted OR multi-factorial OR intervention OR rehabilitation OR complex OR alternative) AND (caregivers OR community OR community Health Services OR community health planning OR Community Health Services OR Community Health Nursing OR Community Health Workers OR community living OR community nursing OR community dwelling OR community-dwelling OR day care OR extra care housing OR Home Care Services OR home health care OR “home nursing” OR HOUSING-FOR-THE-ELDERLY OR Intermediate Care Facilities OR non-institutionalised OR occupational therapy OR Residence Characteristics OR sheltered housing OR Social Support OR carers OR dwelling) *Search terms were adapted for other databases.

Evidence synthesis

Due to the heterogeneity of interventions, outcomes and follow-up, a narrative synthesis was constructed according to the ‘target’ group (interventions offered to people living with dementia alone, to dyads (people living with dementia and family carers) and to family carers alone and broad intervention groups and outcomes.

Seven studies (10 papers) reported evidence on interventions that focused on people living with dementia only, 18 studies (33 papers) on dyads and 23 studies (46 papers) related to family carers only. Studies took place in the United States (US) (n = 27), mainland Europe (n = 7), United Kingdom (UK) (n = 6), Japan (n = 2), Hong Kong (n = 3); one report came from a collaborative UK/US/Australia study, one from Canada and one from a joint Russia/Peru study. Most studies targeted the mild-moderate stages of dementia and included all dementia types. The quality of the studies was mixed, with 20 having low risk of bias (ROB) (5 or more domains of low or good quality); 8 low/unclear risk (4/6 domains of low or moderate quality), 15 unclear and 5 at high risk. They used various instruments for BPSD-related outcomes, most validated or based on previous research. Less than half the studies reported theoretical frameworks. Details of these and effect sizes are shown in evidence Tables S1 to S3 (see supplementary tables). Comparison groups mostly included ‘usual care’ or interventions that did not include specific components of a complex intervention.

Behavioural interventions

Education and training

Four psychosocial education and training interventions ((1) Belle et al., 2006; Nichols et al., 2008, (2) Gitlin, Winter, Dennis, Hodgson, & Hauck, 2010a, (3) Gitlin, Winter, Dennis, Hodgson, & Hauck, 2010b; Gitlin, Winter, Dennis, & Hauck, 2007; Gitlin & Rose 2016) and (4) Judge, Yarry, Looman, & Bass, 2012; Judge, Yarry, & Orsulic-Jeras, 2010) were included.

Multicomponent interventions

Two good quality studies from the US and Denmark involved multifaceted Alzheimer’s disease programmes for dyads, which included home-based exercise with behavioural management and multifaceted semi-tailored counselling, information and support programmes, respectively.

Organisational interventions

Physical and structured interventions

Support interventions

Interventions for family carers alone (supplementary evidence Tables S3.1–3.2)

Of 23 studies directed at family carers alone, 10 were of good quality, three were of moderate quality and the rest were unclear or of low quality. For family carer interventions, the number of sessions and duration of interventions varied from brief (<6 sessions, n = 5), to medium (around 8–14 sessions, n = 9), to long (≥16 sessions weeks, n = 9); and follow-up periods varied from short (≤6 months, n = 11) to longer term (>6 months, n = 12) (Evidence Table S3.2 reports studies by intervention whilst Table S3.3 shows outcomes).

Behavioural interventions

One moderate quality study evaluating intensive CBT-based telephone intervention (TeleTanDem) focused on managing behavioural problems, promoting competence and coping strategies for challenging behaviour, personality changes of care recipient, enhancing coping skills for reducing social isolation and help with accessing professional and informal support. This 12-week intervention reduced family carer depression but with no effect on QoL. However, it did not specifically target clinically depressed family carers (Schinköthe & Wilz, 2014; Wilz, Schinköthe, & Soellner, 2011; Wilz, Meichsner, & Soellner, 2016; Wilz & Soellner, 2016).

Education and training

Sixteen studies evaluated education and training programmes targeted specifically at family carers. These included six psychoeducational ((de Rotrou et al., 2011), (Gallagher-Thompson et al., 2003; Gallagher-Thompson, Gray, Dupart, Jimenez, & Thompson, 2008), (Gallagher-Thompson et al., 2010), (Buckwalter, Gerdner, & Kohout, 1999; Gerdner, Buckwalter, & Reed, 2002; Garand, Buckwalter, & Lubaroff, 2002), (Hebert et al., 2003) and (Martin-Carrasco et al., 2009)), six psychosocial ((Burgio, Stevens, Guy, Roth, & Haley, 2003), (Czaja, Loewenstein, Schulz, Nair, & Perdomo, 2013), (Farran et al., 2004; Farran et al., 2007), (Moniz-Cook et al., 2008), (Tremont et al., 2014; Tremont et al., 2013; Tremont, Davis, Bishop, & Fortinsky, 2008) and (Ulstein, Sandvik, Wyller, & Engedal, 2007)) and four other training programmes ((Gavrilova et al., 2009; Guerra, Ferri, Fonseca, Banerjee, & Prince, 2011), (Hepburn, Tornatore, Center, & Ostwald, 2001; Ostwald, Hepburn, & Caron, 1999), (Teri, McCurry, Logsdon, & Gibbons, 2005; Logsdon et al., 2005) and (Wright, Litaker, Laraia, & DeAndrade, 2001)).

Evidence from seven good quality family carer studies suggests that psychoeducation programmes focusing on problem solving techniques, emotion-centred coping (de Rotrou et al., 2011), enhancing skills in handling disruptive behaviours, cognitive appraisal with coping strategies (Hebert et al., 2003) and identifying triggers, planning to manage as symptoms change and ‘anticipating’ stressful situations (Gallagher-Thompson et al., 2008) improve family carer health including depression, distress and reactions to disruptive behaviours. Psychosocial interventions report that enhancing behaviour management skills reduced emotional stress related to agitated behaviours over 18 months (Farran et al., 2004). The intervention involved 12-weekly sessions (group and individual) with booster sessions and ‘as needed’ telephone calls over 12 months.

Intervention training for community mental health nurses (CMHN) (Moniz-Cook et al., 2008) improved coping with problem behaviours, although long interventions are required. CMHNs received both group and individual in-service supervision sessions, weekly, fortnightly and then monthly over 18 months. This study suggests that the intervention effect depended on the CMHN who delivered it. Highly accessible, intensive telephone contacts of longer duration between therapists and family carers and potentially low-cost interventions to enhance coping reduced family carer depression and improved reactions to care recipient behaviours at six months (Tremont et al., 2014).

Training community consultants (master’s level healthcare professionals) to teach family carers behavioural management plans was found to improve both behaviours and carer burden, depression and reactions to behaviours at six months following a brief intervention (Teri et al., 2005).

Environmental interventions

One good quality US study examining home environment skill-building interventions (Gitlin, Corcoran, Winter, Boyce, & Hauck, 2001; Gitlin et al., 2003; Gitlin, Hauck, Dennis, & Winter, 2005) aimed to help family carers develop a supportive environment which reduced disruptive behaviours and functional decline. The intervention involved intensive training by OTs, home visits and telephone contacts. It reduced family carer burden and enhanced carer well-being, sustaining carer affect over a year but was resource intensive. More frequent professional contact and ongoing skills training may be necessary to maintain other important outcomes such as reduced carer distress in managing problem behaviours. Although the intervention can be adapted to other cultural/ethnic groups, more work is required on level of intensity and on dyad interactions, according to the researchers. People in the severe stage of dementia are not likely to benefit from this type of intervention, in the researchers’ view.

Multi-component interventions

REACH carer interventions (Resources for Enhancing Alzheimer’s Caregiver Health) from various sites in the US aimed to assist family carers to manage disruptive behaviours in care recipients. They were overall intensive, with long durations and of unclear risk of bias. They offered multiple components which included behaviour management, stress-coping mechanisms, family-based therapy with access to community support, telephone systems and skills training. Evidence from REACH studies suggests that family therapy using computer-mediated automated interactive voice response targeted at culturally different groups in five US sites has the potential to reduce ‘bother’ and upset about BPSD and carer depression (Eisdorfer et al., 2003; Elliott, Burgio, & Decoster, 2010; Mahoney, Tarlow, & Jones, 2003; Mahoney, Tarlow, Jones, Tennstedt, & Kasten, 2001). Wives who exhibited low mastery and high anxiety benefitted most from the automated telecare intervention. Differential responses to psychosocial interventions according to race and relationship to care recipients may be important (Burgio et al., 2003; Czaja et al., 2013). Although the effects of racial or ethnic concordance between carers and interventionists on carer depression and burden were not significant, they need to be examined systematically in further studies (McGinnis et al., 2006). Offering multiple components with flexibility for participants to choose component, frequency, duration and timing appears to be important. No costs are reported.

REACH II offered skills training, systematically targeting problem areas, in-home family therapy, access to resources for managing BPSD and engagement with family carers in the intervention process (see Evidence Tables S2.1–2.2, S3.1–3.2). Whilst it reported positive benefits for family carers from ethnically diverse populations, particularly when outcome domains were closely linked to intervention components (Belle et al., 2006), it was resource intensive. However, the intervention significantly reduced family carer hours per day compared with controls at one site (Nichols et al., 2008).

Clinical application and implementation of the REACH II programme in the US Veterans health care system resulted in positive family carer benefits (Nichols, Martindale-Adams, Burns, Graney, & Zuber, 2011), although REACH studies were of mixed quality and involved intensive individualized home visits and telephone sessions. The implementation programme was structured and individualized through risk assessment, targeted education, support and skills training to address family caregiving risk areas of safety, social support, problem behaviours and management of depression (Belle et al., 2006; Martindale-Adams, Nichols, Burns, Graney, & Zuber, 2013).

Support interventions

Of four family carer studies ((1) Knapp et al., 2013; Livingston et al., 2013, (2) Mittelman, Haley, Clay, & Roth, 2006; Mittelman, Roth, Clay, & Haley, 2007; Mittelman, Roth, Coon, & Haley, 2004; Mittelman, Roth, Haley, & Zarit, 2004, (3) Martindale-Adams et al., 2013 and (4) Pillemer & Suitor, 2002), the ‘Strategies for relatives’ programme (START) manual based coping support included psychoeducation, counselling, relaxation, behaviour management for carers with high burden improved carer mood (depression and anxiety) and reported less abusive behaviour of family carers towards care recipients (Livingston et al., 2013). Eight sessions were delivered over 8–14 weeks during eight months’ follow-up. An economic evaluation showed that START had a greater than 99% chance of being cost effective compared with usual treatment alone, at a willingness to pay threshold of £30,000 per Quality Adjusted Life Year gained, and a high probability of cost effectiveness in reducing anxiety and depression (Knapp et al., 2013; Livingston et al., 2013).

Enhanced counselling and support for family members (involving regular sessions with carers and a family support group of unlimited sessions with ad-hoc counselling available over a long follow-up period) can lead to sustained benefits in reducing carer depression and less than half as many nursing home placements compared with usual care (Mittelman et al., 2006; Mittelman et al., 2007; Mittelman, Roth, et al., 2004; Mittelman, Roth, Haley, et al., 2004). The authors suggest that in order to be maximally effective, structured components of longer duration should be widely available to provide effective, evidence-based interventions for family carers.

Implications for practice

For commissioners or service funders, there are difficult decisions about how to fund multicomponent programmes for symptom management. These decisions may now be better informed by the evidence that practitioners with specific skills in managing BPSD (specific behavioural intervention protocols with individualised plans and input from primary care professionals) can improve behavioural symptoms and family carer outcomes. It is important to consider family carer involvement and their readiness to participate in such interventions. More evidence is needed about what training and skills development are most cost-effective.

Strengths and limitations of the review

We used systematic and rigorous methods to review RCT evidence. Despite our efforts to identify all available studies, some may have been missed. However, we used a comprehensive approach to ensure that a broad evidence base from the first mapping stage enabled us to select appropriate studies for the evidence synthesis. In order to manage the literature for dyads and family carers, we prioritised RCTs that aimed to address BPSD management as a component of a complex intervention, reported BPSD relevant outcomes and excluded poor quality pilot studies. Our findings might have been less tenuous if we had taken a narrower focus to studies that included only people living with dementia, or only dyads, or only family carers, but this would have excluded many studies and not reflected the heterogeneity of the population.

Several methodological issues may have had an important bearing on the findings of this review. Some studies were of limited quality, with short-term follow-up and high attrition. There was a considerable heterogeneity in interventions and in the measurement of outcomes, making comparisons difficult. The tools for measuring BPSD and related symptoms and family carer outcomes varied across the studies. Although participants’ satisfaction and process measures from several studies and carers’ reports from qualitative studies relating to RCTs were generally reported to be good, with only modest effects on other outcomes, it is possible that the intervention studied was ineffective due to methodological limitations or it may be that these evaluations did not capture the complexity of BPSD. People living with dementia may exhibit more than one symptom and different symptoms may need different treatments or interventions. Not all studies reported their theoretical basis, although some were based on models from previous research. We categorised studies in what we judged to be the main components of non-pharmacological interventions, as defined by previous research. Although we located a broad range of material, we excluded studies that did not specifically address BPSD management in the intervention or did not provide adequate detail for us to judge this. Despite the inherent complexity of BPSD management and the limitations of our study, evidence highlights the benefit to people living with dementia and family carers of some interventions for BPSD management.

The resource implications of delivering interventions (staffing, number of sessions, facilities and materials) varied considerably and were often incompletely reported. Costs were rarely calculated. Future evaluations of interventions would ideally provide robust evidence to funders or service commissioners through a full cost-effectiveness analysis. Where impact on BPSD is incidental rather than the primary outcome and when interventions are multicomponent, issues associated with attributing input to effects need to be considered at the research design stage.

Implications for research

Large-scale complex intervention studies with in-built economic evaluations and long follow-up periods are required to clarify which interventions are effective and cost-effective. Standardisation of definitions and measures of BPSD across the research community including family carer perspectives would aid better targeting of interventions and aid meta-analysis of data. Research should also explore the components of multifaceted interventions that contribute to effectiveness for both people living with dementia and family carers, as well as examining intensity, dose, duration and format of effective interventions to assess ‘value for money’. Research designs that are more appropriate for complex interventions and examine active ingredients of such interventions need to be developed (Craig et al., 2008).

Future trials should collect qualitative data to explore how to better target interventions and contain a process analysis to identify features of adoption beyond research initiatives. Cultural and linguistic specific interventions may be required to support people from diverse populations. Future research needs to consider the effectiveness of tailoring interventions to improve family carer readiness to use non-pharmacological interventions.