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Aging & Mental Health Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/camh20

Qualitative studies of psychosocial interventions for dementia: a systematic review a

b

Ottilie Dugmore , Martin Orrell & Aimee Spector

a

a

Department of Clinical, Educational and Health Psychology, University College London, London, UK b

Division of Psychiatry, University College London, London, UK Published online: 09 Mar 2015.

Click for updates To cite this article: Ottilie Dugmore, Martin Orrell & Aimee Spector (2015): Qualitative studies of psychosocial interventions for dementia: a systematic review, Aging & Mental Health, DOI: 10.1080/13607863.2015.1011079 To link to this article: http://dx.doi.org/10.1080/13607863.2015.1011079

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Aging & Mental Health, 2015 http://dx.doi.org/10.1080/13607863.2015.1011079

Qualitative studies of psychosocial interventions for dementia: a systematic review Ottilie Dugmorea*, Martin Orrellb and Aimee Spectora a

Department of Clinical, Educational and Health Psychology, University College London, London, UK; bDivision of Psychiatry, University College London, London, UK

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(Received 30 April 2014; accepted 15 January 2015) Objectives: Whilst a range of psychosocial interventions are used for people with dementia, there lacks evidence for the processes which underpin them. Systematic reviews focus on quantitative studies and there is a lack of qualitative reviews in the area. The review aimed to address this gap by exploring what existing qualitative studies reveal about the implementation, effects and processes of psychosocial interventions for dementia. Method: A systematic literature search was conducted, identifying 363 studies. Sixteen studies were found to meet the inclusion criteria and assessed for quality using pre-specified criteria. Thematic analysis was used to synthesise the findings. Results: There were 10 descriptive themes. Despite the diversity of the psychosocial interventions, there were common themes in relation to (1) contextual and individual factors affecting implementation (2) perceived impact of the interventions and (3) the processes active in achieving these effects. Study quality was adequate but variable. Conclusion: Common processes may underlie different psychosocial interventions for dementia. The synthesis of qualitative findings can offer insight into what makes interventions ‘work’ and factors which may facilitate or impede their use. Keywords: dementia; psychosocial interventions; qualitative methods

Introduction In the UK, over 700,000 older people have dementia, placing an enormous strain on public services and family carers. The National Institute for Health and Clinical Excellence recommends a number of psychosocial interventions for the symptoms of dementia (National Collaborating Centre for Mental Health, 2006). A systematic review by Olazar
an et al. (2010) found that cognitive training, cognitive stimulation and multicomponent interventions were effective in improving cognition in people with dementia, whilst behavioural improvements were achieved by cognitive stimulation, multicomponent interventions, behavioural interventions and staff training. Multicomponent interventions were effective in improving mood and quality of life amongst people with dementia. Meanwhile, Cochrane reviews of snoezelen therapy (Chung & Lai, 2002), validation therapy (Neal & BartonWright, 2003) and reminiscence (Woods, Spector, Jones, Orrell, & Davies, 2005) have been unable to find sufficient evidence to recommend a particular approach. Thus, while a broad range of psychosocial interventions for dementia exist, high quality research evidence to support the use of these interventions is often limited. Olazar
an et al. (2010), for example, highlight a number of methodological limitations amongst existing studies, including small and poorly defined samples, poorly specified interventions, absent theoretical models and a lack of blind outcome measurements. They also point to the fact that

*Corresponding author. Email: [email protected] Ó 2015 Taylor & Francis

many of the studies evaluate multicomponent interventions which aim to improve several domains. As such, it is hard to know what element worked, how it worked and for whom. Conclusions from reviews of quantitative studies are therefore limited. A recent review of qualitative research (Lawrence, Fossey, Ballard, Moniz-Cook, & Murray, 2012) focused on psychosocial interventions delivered in residential settings for people with dementia. It found that beneficial interventions enabled people with dementia to connect with others, make a meaningful contribution and reminisce. Successful implementation depended on factors such as the engagement of staff and family, flexibility, the provision of individualised care and allocation of sufficient staff time. Gibson, Timlin, Curran, and Wattis (2004) note that qualitative evaluations of interventions for dementia are under-represented and that ‘within clinical trials qualitative methods remain underused’. Sandelowski, Docherty, and Emden (1997) observe that there has been a gradual accumulation of qualitative studies, but little accumulation of the understandings gained from them. More recently, the Medical Research Council has recommended that qualitative methods should be used to support randomised controlled trial (RCT) evaluation of complex interventions (Medical Research Council, 2008). Reviews of qualitative studies are likely to be valuable in drawing together insights into how people with dementia, staff and

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carers experience psychosocial interventions and in generating ideas as to how interventions work. And yet, there is only one other known review in this area which focuses on qualitative studies in this way (Lawrence et al., 2012). The current review aimed to address this gap in the literature by considering: What do qualitative studies reveal about the implementation, effects and processes of psychosocial interventions for dementia?

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Method Search strategy The PsychInfo and Embase databases were searched. The search terms ‘treatment’, ‘treatment effectiveness evaluation’, ‘intervention’, and ‘therap’ were paired with ‘dement’. In PsychInfo, the limit function was applied to restrict the search to qualitative studies and peer-reviewed articles published between August 1996 and August 2011. In Embase, the limit ‘qualitative (maximises specificity)’ was applied. Titles and abstracts were reviewed to identify potentially relevant articles and reference lists of selected articles were screened. The grey literature was also searched, using Google Scholar. Inclusion criteria Empirical studies

Mays and Pope’s quality questions. Three criteria (8, 10 and 11) were based on quality indicators discussed by Mays and Pope but not included in their final set of questions. One criterion (5) was taken from a set of quality assessment questions developed by the Critical Appraisal Skills Programme (CASP) (2006). Studies were assigned a score according to how many of the 12 criteria they met: the maximum score was therefore 12. Studies scoring above the mean score for this review (8/12) were considered to be of good quality, whilst those scoring below the mean were considered to be of poorer quality. One criterion (1) was used to screen out studies of particularly poor quality. For example, this included studies where the methodology was not reported or the methodological rigour was extremely poor.

Analysis A broad range of methods has been proposed for the synthesis of qualitative research, including meta-ethnography (Noblit & Hare, 1988), thematic analysis/synthesis

Table 1. Quality criteria. Adapted from Mays and Pope (2000)

 employing qualitative methodology,  published (or, for unpublished studies, reported) between August 1996 and August 2011,  evaluating a non-pharmacological, clinical intervention for people with dementia,  published in English. Exclusion criteria Studies evaluating    

an intervention for carers of people with dementia, a service model, pharmacological interventions, environmental interventions.

For this review, a psychosocial intervention was defined as a purposeful, facilitated activity for people with dementia, which aimed to bring about positive behavioural, cognitive and/or emotional change in the person with dementia. The term ‘carer’ is used throughout as a generic term for both professional care staff and family members who care for a relative with dementia. Where the topic pertains to professional care staff only, the term ‘staff’ or ‘care worker’ is used, whereas ‘family carer’ will be used to identify issues that relate specifically to family members who act as carers. For the purposes of this review, the term ‘staff’ describes a range of professionals involved in caring for people with dementia, including care workers, nursing assistants, registered nurses and activity facilitators. Quality rating Twelve quality criteria were applied, adapted from Mays and Pope (2000) (Table 1). Eight were taken directly from

Worth or relevance (1) Was this piece of work worth doing at all? Has it contributed usefully to knowledge? Clarity of research question (2) If not at the outset of the study, by the end of the research process was the research question clear? Appropriateness of the design to the question (3) Would a different method have been more appropriate? For example, if a causal hypothesis was being tested, was a qualitative approach really appropriate? Context (4) Is the context or setting adequately described so that the reader could relate the findings to other settings? Sampling (5) Did the researcher explain how the participants were selected, and why the participants they selected were the most appropriate to provide access to the type of knowledge sought by the study? Data collection and analysis (6) Were the data collection and analysis procedures systematic? (7) Was an ‘audit trail’ provided such that someone else could repeat each stage, including the analysis? (8) Did the researcher search for and/or discuss disconfirming cases? (9) Were sufficient data included in the reports of the study to provide sufficient evidence for readers to assess whether analytical criteria had been met? (10) Were findings triangulated with results from other data collection methods/data sources? (11) Were findings/interpretations validated via respondent validation or ‘member checking’? Reflexivity of the account (12) Did the researcher self-consciously assess the likely impact of the researcher (e.g. personal biases and characteristics) and research process on the data and interpretation?

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Aging & Mental Health (Campbell et al., 2003; Thomas & Harden, 2008) and qualitative meta-synthesis (Jensen & Allen, 1996). Decisions about the method of synthesis is influenced by a number of factors including the question posed, likely number of relevant studies and the knowledge and expertise of the team undertaking the review (University of York, 2009, p. 230). Thematic analysis (Braun & Clarke, 2006) was chosen due to its flexibility, which was important given the broad research question and the diversity of studies included. Conversely, meta-ethnography and other methods have been designed to review small numbers of closely related studies (Campbell et al., 2003). Selection of studies is often purposive. By contrast, and notwithstanding the difficulties of searching for qualitative studies, this review aimed to offer a comprehensive review of qualitative studies in the area. Further, thematic analysis allows for both description and interpretation of data. Given that there were no other known reviews of qualitative studies in this area at the time of the review, an analysis which enabled a substantial descriptive element seemed appropriate. The initial analysis was carried out by Ottilie Dugmore (OD), followed by review and refinement of the candidate themes, carried out by OD and Aimee Spector (AS) (members of the research team). The articles were read in full and the findings of each study summarised and entered into a database, primarily using verbatim quotes from study abstracts and the main body of the papers. The ‘data’, for these purposes, consisted of any information drawn from the paper (usually in the abstract, results or discussion) that could reasonably be considered to represent a finding or conclusion and which related to the research question of the current review. The first stage of analysis involved familiarisation with the data and making notes on initial coding ideas. Initial codes were identified from the data at a semantic level and grouped together to form descriptive themes, which were derived inductively from the data. Once the candidate themes were identified, they were reviewed and refined. First, the collated extracts for each theme were re-read to check that they formed a coherent pattern. Following this, the whole data set was re-read to check that the identified themes reflected the data set as a whole, and to check for any additional data which may have been missed in the earlier coding stage. As a credibility check, another member of the research team (AS) checked the candidate themes against the data to ensure they appeared to be an accurate reflection. This resulted in some themes being discarded or combined, for example if there were not enough data to support the original theme. The process was informed by the concepts of internal homogeneity and external heterogeneity; whereby the aim was for data within themes to cohere together meaningfully, whilst keeping clear and identifiable distinctions between themes. The research question was held in mind throughout and informed the development of three overarching domains. These domains were used as broad categories to group the descriptive themes under.

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Results Overview of results The search retrieved 363 articles. Titles and abstracts were read and the inclusion/exclusion criteria applied, which yielded 45 potentially relevant articles. Upon reading these 45 studies in full, 16 were excluded because they did not evaluate a clinical intervention and 3 were excluded because they evaluated an intervention for carers. Five were excluded because they did not employ qualitative methods, three because they were not available in English, four because the intervention was not evaluated in sufficient depth to make the study worthwhile (and were therefore excluded on the basis of poor quality), and one because it could not be accessed. This left 13 relevant articles from the database search, and an additional 3 articles from reference lists. This final review included 15 published peer reviewed articles and one unpublished doctoral thesis. The decision to include the doctoral thesis was made on the basis of it meeting most quality criteria and being highly relevant to the research question. Table 2 lists the key characteristics of the included studies.

Study design Sixteen studies were included. Five studies employed a purely qualitative design (Ahonen-Eerikainen, Rippin, Sibille, Koch, & Dalby, 2007; Brataas, Bjugan, Wille, & Hellzen, 2010; McKeown, Clarke, Ingleton, Ryan, & Repper, 2010; Pullan, 2009; Riley-Doucet, 2009). Seven studies reported on qualitative findings, but formed part of a larger, mixed methods study in which the quantitative findings were described elsewhere (Cheston, Jones, & Gilliard, 2004; Hope, Easby, & Waterman, 2004; Hope & Waterman, 2004; Jarrott & Gigliotti, 2011; Sorensen, Waldorff, & Waldemar, 2008; Spector, Gardner, & Orrell, 2011; van Weert et al., 2004). The remaining four studies used a mixed methods design and reported both quantitative and qualitative findings.

Quality assessment The average number of quality criteria met was eight out of twelve, with a range of five to ten criteria met. A longestablished approach to improving quality in qualitative research is to actively search for findings that seem to contradict the emerging explanation (Mays & Pope, 2000). Seven of the studies explicitly attended to disconfirming cases (Hope et al., 2004; Mason, Clare, & Pistrang, 2005; McKeown et al., 2010; Pullan, 2009; Riley-Doucet, 2009; Watkins, Cheston, Jones, & Gilliard, 2006; Zarit, Femia, Watson, Rice-Oeschger, & Kakos, 2004). All but four of the studies (Brataas et al., 2010; Cheston et al., 2004; Hope et al., 2004; Pullan, 2009) used some form of triangulation, either comparing the results from two or more methods of data collection or two or more data sources. Four studies (Ahonen-Eerikainen et al., 2007; Haight et al., 2003; van Weert et al., 2004; Zarit et al., 2004) failed to adequately describe their method of data analysis. Three studies (Haight et al., 2003; Jarrott and Gigliotti,

Focus groups Interviews

Interviews

PC 19

PC 15

UK Inpatient wards, old age psychiatry

UK Inpatient wards, old age psychiatry

Multi-sensory environments No. of sessions: not stated Frequency: not stated Session length: not stated

Multi-sensory environments No. of sessions: not stated Frequency: not stated Session length: not stated

Hope et al. (2004)

Hope and Waterman (2004)

Case study

PWD 2

US Patients’ homes

Reminiscence: life review No. of sessions: 8 Frequency: weekly Session length: 1 hour

Haight et al. (2003)

Observation, case study

PWD 1

UK Setting not stated

Group psychotherapy No. of sessions: 10 Frequency: weekly Session length: min. 1 hour

Cheston et al. (2004)

Interviews

PWD 9

Day activity programme No. of sessions: 7 Frequency: weekly Session length: day programme

Brataas et al. (2010)

Norway Day centres

Music therapy groups No. of sessions: 12 Frequency: approx. weekly Session length: 1 hour

Observation

Qualitative methodology

PWD 6

Sample N

Canada Day centre

Setting

AhonenEerikainen et al. (2007)

Author

Description and intensity of psychosocial intervention

Table 2. Description of studies reviewed.

Met 7/12 criteria §ve: observational data triangulated via analysing therapist field notes, videotape and comments from outside observers; findings triangulated with larger qualitative study. -ve: female participants only; sampling method/ rationale and method of analysis not described in detail. Met 7/12 criteria §ve: detailed description of study context. -ve: no triangulation; method/reason for participant selection not described Met 6/12 criteria §ve: method of data collection and analysis welldescribed. -ve: context and setting, method or reason for case selection not described; recording was via notes rather than audio/video recording; no triangulation; no discussion of limitations. Met 5/12 criteria §ve: triangulation via different data sources and different methods of data collection. -ve: aspects of data collection methods unclear; method of analysis and method/reason for participant selection not described; do not cite sufficient findings to support explanations. Met 10/12 criteria §ve: disconfirming/ negative cases discussed; findings/ interpretations validated via respondent validation. -ve: no triangulation; intensity of intervention not described. Met 10/12 criteria §ve: triangulation used; findings/interpretations validated via respondent validation; method of data collection and analysis well-described. -ve: intensity of intervention not described.

 Quality of life: the role of music, therapeutic benefit, and group therapeutic factors of the music therapy group

 Client experiences and effects on everyday life

 Levels of awareness  Changes in affect

 Integration of life events

 Staff perspectives on the use of MSE  Perceived impact on patients

 Staff perspectives on the use of MSEs

(continued)

Quality assessment and comments

Focus of analysis

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Horticultural therapy No. of sessions: 12 Frequency: twice weekly Session length: not stated

Support groups No. of sessions: 15 (mean) Frequency: weekly Session length: 1 hour

Life story work No. of sessions: not stated Frequency: not stated Session length: not stated

Reminiscence: life story books No. of sessions: 5 Frequency: not stated Session length: 30 minutes

Multi-sensory environments No. of sessions: 7 (mean) Frequency: daily (mean) Session length: 27.5 minutes (mean)

Jarrott and Gigliotti (2011)

Mason et al. (2005)

McKeown et al. (2010)

Pullan (2009)

Riley-Doucet (2009)

Author

Description and intensity of psychosocial intervention

Table 2. (Continued )

(continued)

Met 10/12 criteria §ve: triangulation used; disconfirming/negative cases noted.

 Feasibility and effectiveness of MSEs

Interviews Observation

PWD 10 FC 10

US Patients’ homes

Met 10/12 criteria §ve: disconfirming/negative cases noted; reflexive account of researcher influences given. -ve: no triangulation used.

 Experiences of care staff delivering reminiscence sessions

Interviews

PC 11

UK Services for older adults

Met 10/12 criteria §ve: study context and sampling approach welldescribed; triangulation via multiple data collection methods and sources; disconfirming/negative cases noted. -ve: small sample of family members; intensity of intervention not described.

How life story work is:  understood and developed in practice  experienced by all participants  affects the delivery and outcomes of care

Semi-structured interviews, observation

PWD 4 PC 18 FC 3

UK Assessment wards for PWD, care ward for PWD, day centre for PWD

Met 10/12 criteria §ve: triangulation used; disconfirming/negative cases noted.

PWD 11

UK Local day hospital for older adults

 Mutual support processes in support groups  Participants perceptions of the groups

Interviews

Interviews Observation

Quality assessment and comments Met 7/12 criteria §ve: process of data analysis well-described; Triangulation via inclusion of different staff group perspectives. -ve: nature of intervention not described in detail; method/reason for participant selection not described; authors do not cite sufficient findings to support their explanations.

Focus of analysis  Contextual and procedural factors affecting outcomes

Qualitative methodology

PC 5

Sample N

US Nursing homes, day centres

Setting

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Met 6/12 criteria §ve: explores perspectives of both PWD and their caregivers; disconfirming/negative cases noted. -ve: method of analysis not described; authors do not cite sufficient findings to support their explanations.

 Understanding of dementia  Strength of care dyad and communication  Level of peer cohesion and support

Interviews

PWD 24 FC 23

US Geriatric Assessment Clinics

Psychoeducation group No. of sessions: 10 Frequency: fortnightly Session length: not stated

Zarit et al. (2004)

Met 10/12 criteria §ve: reasons for selecting case study participants explained; involved some elements of deviant case analysis; triangulation used; lots of data to support interpretations; analysis and decision-making for ratings well-described. -ve: no discussion of study limitations.

 Levels of awareness  Changes in affect

Observation, case study

PWD 1

UK Setting not stated

Group psychotherapy No. of sessions: 10 Frequency: weekly Session length: min. 1 hour

Met 7/12 criteria §ve: triangulation used; findings/interpretations validated via respondent validation; disconfirming/ negative cases noted. -ve: method of analysis, method/reason for participant selection and intensity of intervention not described.

 Factors affecting implementation  Changes in caregivers  Changes in residents  Organisational changes

Interviews Group discussions

PC Interviews: 6 No. of participants in group discussions: not stated.

Netherlands Psychogeriatric wards

Watkins et al. (2006)

Note: PWD D Person(s) with dementia; FC D Family carers; PC D Professional carers; +ve = Positive; -ve D Negative.

van Weert et al. (2004)

Multi-sensory stimulation/ snoezelen No. of sessions: not stated Frequency: not stated Session length: not stated

Met 9/12 criteria §ve: method of analysis well-described; triangulation with quantitative findings and different data sources.

 Impact of intervention from the perspective of PWD, carers and group facilitators

Interviews Focus Group

Quality assessment and comments

PWD 17 FC 14 PC 7

UK Day centres

Cognitive stimulation therapy No. of sessions: 14 Frequency: twice weekly Session length: not stated

Spector et al. (2011)

Focus of analysis

Met 9/12 criteria §ve: triangulation explores perspectives of both PWD and caregivers. -ve: themes identified as findings corresponded with topics on interview schedule.

PWD 10 FC 10

Group counselling and support No. of sessions: approx. 17 sessions over 6 months Frequency: not stated Session length: not stated

Sorensen et al. (2008)

Qualitative methodology  Experienced outcome of intervention

Sample N Interviews

Setting

Denmark Patients’ homes

Author

Description and intensity of psychosocial intervention

Table 2. (Continued )

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2011; Zarit et al., 2004) did not include sufficient information to allow readers to assess whether the interpretations were supported by the data. Reflexivity is often viewed as a cornerstone of qualitative research which distinguishes it from the positivist paradigm. It is surprising, therefore, that only one of the studies reviewed (Pullan, 2009) reflected on the likely impact of the researcher (for example, their personal biases and characteristics) on the research process. Another important quality indicator in qualitative research is the use of respondent validation, or ‘member checking’. This involves comparing the researcher’s account with those of research participants’ in order to check the degree of agreement, and then incorporating participants’ reactions into the study findings. Only three of the studies reviewed reported using some form of respondent validation (Hope et al., 2004; Hope & Waterman, 2004; van Weert et al., 2004).

Nature of interventions The studies encompassed a broad range of interventions. Eight were group-based interventions, seven were individual interventions and one study did not specify. Across all studies, four focused on multi-sensory interventions, four can be considered activity-based interventions, five interventions were educational and/or supportive in nature and three interventions were reminiscence-based (see Table 2).

Findings The analysis revealed 10 descriptive themes (Table 3). These were organised under three domains, which broadly related to the research question: ‘delivering the intervention’, ‘outcomes’ and ‘active mechanisms’. Delivering the intervention Contextual factors. Contextual factors related to environmental and organisational influences on the delivery of

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the intervention. Hope and Waterman (2004) described the delivery of multi-sensory environments (MSEs) in an inpatient setting where outcomes-focused activities (such as washing and dressing) were prioritised over processbased activities (such as spending time talking to residents). As such, therapeutic activities were perceived as ‘fundamentally opposite to contemporary trends in healthcare delivery’ (2004, p. 59). Likewise, van Weert et al. (2004) and Pullan (2009) describe how interventions were impeded by a ‘task-orientated’ approach to care. This task-orientated approach was often seen to be a product of institutional constraints, such as a perceived lack of time, heavy workload, lack of staff (Jarrott & Gigliotti, 2011; van Weert et al., 2004) and lack of support from management or other staff (Jarrott & Gigliotti, 2011; van Weert et al., 2004). The use of MSEs was facilitated by receiving support and guidance in its use, via ongoing training and supervision (van Weert et al., 2004). The importance of the physical environment and equipment being accessible and suitable for the intervention was also highlighted (Hope & Waterman, 2004; Jarrott & Gigliotti, 2011).

Individual skills, characteristics, attitudes and beliefs. Delivery of psychosocial interventions was seen to be influenced by individual factors, including the characteristics, skills, attitudes and beliefs of carers and people with dementia. (1) Staff Staff confidence in their own technical and interpersonal skills affected how likely they were to use the intervention (Hope & Waterman, 2004) and the impact of the intervention (Pullan, 2009, p. 101). Important staff skills and qualities included the ability to ‘tolerate difficult emotions and uncertainty’ Pullan (2009, p. 101); empathy (Haight et al., 2003); as well as flexibility, creativity, observation skills, an upbeat personality and effective communication strategies, in particular eye contact (Jarrott and Gigliotti, 2011).

Table 3. Themes identified across qualitative studies of psychosocial interventions for dementia. Domain Delivering the intervention

Outcomes

Active mechanisms

Note: PWD D Person(s) with dementia.

Theme Contextual factors Individual skills, characteristics, attitudes and beliefs (i) Staff skills and attributes (ii) Staff beliefs and attitudes (iii) Individual abilities, concerns and preferences amongst PWD Changes in the PWD Changes in carer attitudes, beliefs and behaviours Changes in carer PWD relationship Storytelling and re-telling Gaining new information about dementia – and the person behind the dementia Enabling openness and acceptance Continuity of identity Peer identification, support and membership

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Three studies found that staff viewed psychosocial interventions as being ‘not real work’, compared to ‘direct’ care work, such as dressing residents (Hope & Waterman, 2004; Pullan, 2009; van Weert et al., 2004), with staff feeling ‘guilty’ about spending time delivering the intervention. These perceptions reflected the task-orientated organisational culture in which staff worked. Delivery of interventions could also be impeded by fears that the intervention might cause harm or distress to the person with dementia (Hope & Waterman, 2004; Pullan, 2009). Staff also expressed reservations about engaging the person with dementia in a ‘childish’ manner and delivering an intervention which they felt inadequately skilled to use (Hope & Waterman, 2004).

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(2) People with dementia The cognitive abilities of people with dementia were seen to be an important factor in their capacity to benefit from the intervention (Haight et al., 2003; Hope & Waterman, 2004). People with dementia described shyness and nervousness about speaking out in support groups, and feeling uncomfortable when asked to reflect on their own emotions (Mason et al., 2005). Brataas et al. (2010) note that participants in a day programme felt insecure about attending the programme, as their cognitive deficits made navigating the outside world challenging. These concerns could be ameliorated by contextual factors, such as providing safe transfer to the day centre.

Changes in carer beliefs, attitudes and behaviours. Seven studies identified changes in carer beliefs, attitudes and behaviours. Two studies reported that psychosocial interventions appeared to effect a change from task-orientated to resident-orientated care (Pullan, 2009; van Weert et al., 2004). For example, one member of staff described how she began to prioritise spending time with residents over tasks such as ‘putting stock away’ (Pullan, 2009, p. 93). Staff reported that they started to initiate more interactions with residents and spend more time with them (Hope et al., 2004; van Weert et al., 2004). Interventions also led to staff seeing people with dementia in a ‘new light’. (McKeown et al., 2010; Pullan, 2009). Positive changes noted amongst family carers included feeling more useful and viewing caring as more worthwhile following MSS (Riley-Doucet, 2009). Family carers who participated in a support and counselling programme reported finding it easier to control their stress and temper, and more able to understand changes in their relative as being related to their dementia (Sorensen et al., 2008). Changes in the relationship between carers and people with dementia. Three studies noted changes in relationships. Riley-Doucet (2009) reported that family carers felt more connected to their family member after using MSS and were able to engage in more light-hearted interaction with them. Similarly, staff described feeling closer to the person with dementia (Hope et al., 2004) and experiencing a more connected relationship (Pullan, 2009).

Outcomes Active mechanisms Changes in the person with dementia. Twelve studies discussed changes in the person with dementia. Improvements in mood were perceived for an individual receiving a life review intervention (Haight et al., 2003), whilst improvements in communication were observed for those receiving multi-sensory stimulation (MSS) (van Weert et al., 2004) and cognitive stimulation therapy (CST) groups (Spector et al., 2011). Reduced agitation and aggressive behaviour were observed following MSS (Riley-Doucet, 2009; van Weert et al., 2004) and improvements in self-confidence and self-worth following music therapy groups (Ahonen-Eerikainen et al., 2007), a day care programme (Brataas et al., 2010), support groups (Mason et al., 2005; Sorensen et al., 2008) and life story review (McKeown et al., 2010). CST groups, a day care programme and MSS were thought to have improved cognitive abilities such as memory and alertness (Brataas et al., 2010; Riley-Doucet, 2009; Spector et al., 2011). Day programme participants also reported increased contentment and energy (Brataas et al., 2010). Enjoyment during the intervention was noted by Ahonen-Eerikainen et al. (2007), Brataas et al. (2010), McKeown et al. (2010), Riley-Doucet (2009) and Spector et al. (2011). Watkins et al. (2006) reported overall improvements in mood for participants in the quantitative arm of their study, but an increase in anxiety and depression for one participant.

In this review, the term ‘active mechanisms’, refers to the specific processes within psychosocial interventions which appear to contribute to change in people with dementia and/or their carers. Storytelling and re-telling. Four studies identified the act of talking about the past and present to be a key process of the intervention. Mason et al. (2005) observed that storytelling appeared to reinforce group members’ social identity, while Ahonen-Eerikainen et al. (2007) note that reminiscence and storytelling in music groups appeared to provide a means for social interaction between members. Haight et al. (2003) observed that the act of telling and re-telling life stories within life review appeared to enable people to integrate difficult events into their life story and move on from preoccupying memories or concerns. In their study of psychotherapy groups, Cheston et al. (2004) suggested that narrative, particularly the use of metaphor, allowed indirect expression of psychologically problematic material, which in turn enabled the assimilation of problematic experiences. Brataas et al. (2010) observed that sharing local life experiences allowed reminiscence and strengthened feelings of cultural belonging. Gaining new information about dementia and the person behind the dementia. A recurrent theme was the concept

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Aging & Mental Health of change occurring as a result of learning something new. For carers, this most frequently was related to discovering something unknown or forgotten about the person with dementia. McKeown et al. (2010) and Pullan (2009) describe how learning about the individual’s experiences and history enabled staff to see ‘the person behind the patient’ and thus ‘rehumanise them’. Carers commented on how they had been surprised by individuals’ personhood or capabilities by using the MSE (Hope et al., 2004; Riley-Doucet, 2009). For staff, observing the interventions enabled ‘realisation of their own therapeutic potential’ (Hope et al., 2004, p. 560) which led to an increase in interactions with residents. For people with dementia, new information about dementia and strategies for coping was gained from support and educational groups. Sorensen et al. (2008) found that this appeared to lead to changes in awareness and openness. Psychosocial interventions may also present people with dementia with new information about their own capabilities. By attending a day programme, participants realised their sociability and social competence were intact, and described enhanced communication and memory (Brataas et al., 2010). Enabling openness and acceptance. Several studies refer to the psychological benefits gained by achieving an ‘acceptance’ of difficult experiences and emotions via, for example, dismantling and compensating for psychological ‘defences’, such as denial. Cheston et al. (2004) suggest that an individual attending psychotherapy groups moved from a position of actively avoiding recognition of his dementia to a vague awareness of it, allowing difficult experiences to be ‘assimilated’. In the case of ‘Robert’, (Watkins et al., 2006) an increase in awareness appeared to worsen his anxiety and depression. The authors postulate that, for Robert, the 10 week group was too short and hence painful feelings were left unresolved. Haight et al. (2003, p. 170) suggest that the integration of life events via life review may be particularly helpful for those with greater cognitive decline, as ‘the disease may strip away some defence mechanisms as it progresses so that issues that were once thought to be resolved and put away resurface and become disturbing again’. The concept of gaining greater openness to, and acceptance of, difficult emotions, also appears relevant to carers. Pullan (2009, p. 101) describes a process of ‘rehumanising the professional’ whereby seeing the person behind the dementia enabled staff to move from a position where negative emotions were avoided, to being prepared to tolerate difficult emotions and uncertainty. Continuity of identity. Processes which enable difficult or discontinuous experiences to be ‘integrated’ into an individual’s identity may be psychologically beneficial. Mason et al. (2005) describe how many people with dementia reported a disjuncture between past, present and future, and found that the group appeared to facilitate a sense of continuous identity which linked these. For example, several members made links between how their role in the group was influenced by their former

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professions or their persona at work. Likewise, Brataas et al. (2010) argue that the group provided a basis to maintain identity, via traditional activities and social interaction. For example, eating together reminded people of earlier traditions of extended family life, creating a sense of continuity. McKeown et al. (2010) describe how photographs in one individual’s life story book appeared to trigger memories that he could put into words, enabling staff to use his past to understand his present feelings and behaviour. McKeown et al. (2010, p. 153) note, however, that although life story work can illuminate continuity ‘it also has the potential to emphasise what has been lost for the person and highlight the discontinuity that can occur’. Peer identification, support and membership. Group interventions offer opportunities for social interaction, inclusion and ‘usefulness’ to others. Sorensen et al. (2008) found that people with dementia who attended support groups valued the peer support and sharing of experiences with others in the same situation. Mason et al.’s (2005) interviewees found that the mutual understanding between peers removed the need to explain the difficulties of dementia or worry about ‘looking silly’ (p. 98). Sharing experiences and advice appeared to enhance self-esteem, an observation shared by Ahonen-Eerikainen et al. (2007). Like Mason et al. (2005), they found that a strong sense of group cohesion had developed by the end of the sessions. Spector et al. (2011, p. 949) found that participants in CST groups valued listening to others and feeling able to talk, which contrasted with the ‘passivity’ of home life.

Discussion Overall, the findings suggest far more positive effects than the findings from systematic reviews of RCT evidence. The only finding clearly supported by high-quality RCT evidence is the observation that CST groups improve cognition (Spector et al., 2011). Livingston, Johnston, Katona, Paton, and Lyketsos (2005) found evidence that MSS may reduce socially disturbed and agitated behaviour, which was supported by qualitative evidence in this review (Riley-Doucet, 2009; van Weert et al. 2004). However, reports in this review of improved communication (van Weert et al. 2004) and cognitive improvements (Riley-Doucet, 2009) were not supported. Similarly, Livingston et al. (2005) found no evidence to support the effectiveness of reminiscence, unlike Haight et al. (2003). Olazar
an et al. (2010) have referred to methodological problems within existing RCTs, which often mean there is insufficient high quality evidence to recommend an intervention. The problem may also be one of sensitivity: the positive changes reported by qualitative studies may be too subtle or too fleeting to be picked up by traditional RCTs, particularly in small trials where the power is low. Alternatively, limitations within qualitative studies, such as subjectivity and bias, may lead to an overestimation of positive effects.

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Methodological issues

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The quality of the studies was variable. The highest score against the quality criteria was 10 out of 12, achieved by 7 studies. Some studies were notable for their methodological rigour (Hope et al., 2004; Hope & Waterman, 2004; Mason et al., 2005; Pullan, 2009). However, several suffered from a lack of systematic and repeatable methods of data collection or analysis (Ahonen-Eerikainen et al., 2007; Haight et al., 2003; van Weert et al., 2004; Zarit et al., 2004) and a failure to include sufficient data in the findings to allow readers to assess the analysis (Haight et al., 2003; Jarrott & Gigliotti, 2011; Zarit et al., 2004). Whilst failure to report these aspects does not necessarily invalidate the findings, the lack of transparency invites doubt about methodological robustness. This is often identified as a potential problem for qualitative research more broadly (e.g. Campbell et al., 2003; Daly et al., 2007).

Summary and interpretation of findings Factors affecting the implementation of psychosocial interventions Seven studies considered factors which might influence implementation. Important contextual factors included the organisational culture, availability and organisation of resources and workload; the degree of support for the intervention; and the suitability and accessibility of the physical environment and equipment. A key finding in three studies was that the prioritisation of task-orientated or outcomes-focused approaches to care impeded the delivery of the intervention. A task-orientated approach to care appeared to be influenced by staff beliefs that psychosocial interventions are ‘not real work’, compared to ‘direct’ care work (Hope & Waterman, 2004; Pullan, 2009; van Weert et al., 2004). Just as carer beliefs and behaviours are influenced by contextual factors, they may also exert their own influence on the extent to which a task-orientated approach is implemented. Other individual factors which affected the delivery of psychosocial interventions included the skills and qualities of carers, and carer beliefs about the potential of the intervention to benefit or harm participants (Haight et al., 2003; Hope & Waterman, 2004; Pullan, 2009). This review suggests that implementation of psychosocial interventions is influenced by an interaction of contextual and individual factors, which work to facilitate or impede delivery. To our knowledge, there has been only one other review of qualitative research in this area to date (Lawrence et al., 2012). It differs from the present review in that it focused on interventions delivered in residential settings only and applied a broader definition of psychosocial interventions (e.g. including animal-assisted therapy and staff training programmes). Lawrence et al. (2012, p. 348) also found that the implementation of interventions was affected by the balance between workload and resources and a ‘changing landscape of care,’ whereby priority was given to task completion and ‘aspects of physical care and safety rather than promoting autonomy’.

They additionally noted that prioritising management of ‘behavioural outbursts’ was often a barrier to implementation. The impact of psychosocial interventions Psychosocial interventions were associated with a broad range of changes in people with dementia. Positive changes included improvements in mood, communication, self-confidence/self-worth, cognitive abilities, contentment and energy levels, and reduced agitation and aggression. One study reported overall improvements in mood, but an increase in anxiety and depression for the subject of their case study. It is important to consider the type and rigour of the methods used to measure these apparent changes. Several studies relied on interview data only (Brataas et al., 2010; Sorensen et al., 2008; Zarit et al., 2004). Others used structured observation tools alongside qualitative methods (Ahonen-Eerikainen et al., 2007; Haight et al., 2003; RileyDoucet, 2009) but did not report their validity and reliability. Four studies (Mason et al., 2005; Spector et al., 2011; van Weert et al. 2004; Watkins et al., 2006) triangulated qualitative and quantitative data. Qualitative data can help to indicate the impact and acceptability of an intervention in the early stages of research, which can then inform decisions as to whether further quantitative investigation is worthwhile. Use of qualitative data alone cannot reliably or objectively answer questions of effectiveness. Given the heavy reliance on qualitative methodology amongst the studies in this review, the reported findings relating to changes in the person with dementia must therefore be considered with caution. Qualitative research is not intended to provide definitive answers to questions of effectiveness, nor does it seek to provide objectivity or reliability. Rather, qualitative approaches are able to offer validity, insight and meaning which cannot be captured via positivist methods. The review also found that psychosocial interventions contributed to changes in staff attitudes and behaviour from task-orientated to resident-orientated care (Pullan, 2009; van Weert et al., 2004), increased initiation and duration of interaction with residents (Hope et al., 2004; van Weert et al., 2004), and positive changes in staff views of people with dementia (McKeown et al., 2010; Pullan, 2009). Family carers reported finding it easier to control their emotions and being more able to understand changes in their relative as related to their dementia (Sorensen et al., 2008). Both professional and family carers reported increased feelings of closeness and connection with the person with dementia (Hope et al., 2004; Pullan, 2009; Riley-Doucet, 2009). Active mechanisms in psychosocial interventions Despite the breadth of interventions in this review, a number of common processes emerged in the analysis. Five themes were identified: storytelling and re-telling; gaining new information about dementia and the person behind the dementia; enabling openness and acceptance of difficult experiences and emotions; continuity of identity; and peer identification, support and membership.

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Processes relevant to interactions between carers and people with dementia. In this review, the process of ‘gaining new information’ appeared to be most relevant to interventions that were delivered one-to-one between a carer and a person with dementia. Several studies described how the intervention had facilitated changes in carer beliefs and attitudes (for example, starting to see the ‘person behind the dementia’), which sometimes appeared to contribute to a change in behaviour, such as spending more time with the person with dementia. This is consistent with a central tenet of cognitive therapy (Beck, Rush, Shaw, & Emery, 1979), which affirms that belief change occurs by attending to new information or alternative explanations, which can then affect our feelings and behaviour. The findings can also be understood through Kitwood’s theory of dementia (1997) which asserts that the ways in which carers interact with the person with dementia has a key bearing on their well-being and personhood. The positive changes in carer beliefs and behaviours identified in this review are likely to foster a more person-centred approach to care, in contrast to aspects of a ‘Malignant Social Psychology’, in which disempowerment, labelling, stigmatising, objectification and ignoring occurs.

2009, p. 223). Although reference lists were carefully searched to identify studies not found in the database search, it is likely that some relevant studies were missed. Another limitation stems from the scarcity of qualitative studies in the area. Whilst a broad range of interventions were represented in the review, no relevant studies were found, for example, for validation therapy or behavioural management techniques. As noted in this review and elsewhere, there exists an extremely broad range of ‘psychosocial interventions’ for dementia which can make it difficult to form meaningful comparisons and conclusions in a systematic review. However, given that there are so few qualitative studies in the field, it seemed prudent to consider a broad range of approaches in order to capture the key issues. The definition of psychosocial intervention used in this study was ‘a purposeful, facilitated activity for people with dementia which aimed to bring about positive cognitive, behavioural and/or emotional change in the person with dementia’. The aim of using a specific and narrow definition of ‘psychosocial interventions’ was therefore to increase the validity of the review. However, a major limitation to this definition is that it excluded potentially valuable articles from the analysis; for example, articles on carer interventions, animal-assisted therapy, doll therapy and social dancing were excluded on the basis of not fitting this definition. Embase was used for this search as it is a more comprehensive database than Medline, holding more records and including all Medline records within its database. Notwithstanding, the review may have been strengthened by including searches from other databases. A number of appraisal tools for qualitative research have been developed. The Quality Framework (2000), the Critical Appraisal Skills Programme (CASP, 2006) and the Mays and Pope (2000) quality criteria are amongst the appraisal tools listed by the centre for reviews and dissemination (CRD). The Mays and Pope quality criteria are well used in research and were chosen as a compromise between the more lengthy and detailed Quality Framework and the broader questions posed by the CASP. There are a number of limitations to the quality criteria used. Several criteria may have been more helpfully used only as screening criteria rather than as measures of quality. For example, all studies met the criterion relating to whether a qualitative design was appropriate; hence, this criterion may have limited power to distinguish between the quality of studies. Similarly, the criteria were given equal weighting, yet some are easier to meet than others, and some may have a greater bearing on quality. Differential weighting may have allowed a more accurate evaluation of quality. Other appraisal tools identified by the CRD, for example that developed by Popay, Rogers, and Williams (1998), could also have been considered for this review.

Limitations

Implications for future research and clinical practice

The Centre for Systematic Reviews (University of York, 2009) notes that the methods and tools available to identify qualitative studies are much less well developed than for quantitative studies. Inconsistencies in indexing means that relevant studies may be missed (University of York,

Most studies in this review focus on a single aspect of psychosocial interventions for dementia, such as implementation, possible active mechanisms or the impact of the intervention. Few studies attempt to integrate these to provide an account of how these elements may relate to one

Processes relevant to direct effects on people with dementia. Kitwood (1997) identified the five main psychological needs of people with dementia as comfort, attachment, inclusion, occupation and identity. The themes of storytelling and continuity of identity can be clearly located within the psychological need of identity, whilst peer identification, support and membership links to the psychological need for attachment. Many of the important elements identified under the theme of peer support, identification and membership, map on to the group therapeutic factors founded by Yalom (1985), such as instillation of hope, universality, imparting information, altruism, development of socialising techniques and group cohesiveness. Several group interventions reported improvements in self-confidence and self-worth; but similar effects were also noted with life story work, implying that mechanisms other than, or in addition to, group factors may be useful in enhancing self-esteem. Lawrence et al.’s (2012) synthesis identified three main beneficial elements of a psychosocial intervention for people with dementia: connecting with others, making a meaningful contribution and providing an opportunity to reminisce. These elements have strong similarities with the themes identified in this review. Lawrence et al. note that activities that ‘reflected prior roles or pastimes’ helped to provide a sense of purpose, whilst interventions also acted as a focal point which stimulated conversation. In particular, reminiscence appeared to play a part in allowing individuals to take ‘pride in passing on values and experience’ (2012, p. 346).

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another. This, combined with the absence of reviews of qualitative studies, leads to theoretical ‘silos’ whereby issues of implementation, process and outcome are not joined together in overarching theory. Qualitative research can offer important insights into what makes psychosocial interventions ‘work’. Drawing the findings of these studies together in a review enables a process of theory-building to begin, which can inform the design of clinical interventions. Identifying and applying ‘what works’ has the potential to increase the effectiveness of interventions and ensure that resources for people with dementia are used more efficiently. In addition, this review has identified a number of factors which impede or facilitate delivery of clinical interventions. This information may help to shape the ways in which psychosocial interventions are implemented and maximise the likelihood of them being effective. Further reviews of qualitative studies are needed to enable theory to be systematically developed and refined. Operationalisation of theory may enhance the quality and cost-effectiveness of quantitative studies. This requires more qualitative empirical studies of dementia interventions to be undertaken. It also requires improvements in the consistency of indexing and search functions of bibliographic databases, to ensure that those qualitative studies which do exist can be retrieved reliably. An improvement in the quality of qualitative studies, in particular the reporting of methods, is needed to ensure conclusions drawn from reviews are seen as credible.

Conclusion Common processes may underlie different psychosocial interventions for dementia. The synthesis of qualitative findings can offer insight into what makes interventions ‘work’ and factors which may facilitate or impede their use. Drawing these findings together can contribute to new and existing theory, which can inform the design and delivery of clinical interventions and research.

Disclosure statement No potential conflict of interest was reported by the authors.

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