The past 20 years have seen a revolution in the design, evaluation and efficacy of psychosocial interventions for dementia. Back in 1996 an editorial Reference Orrell and Woods1 highlighted the great disparity in quality between drug trials and trials of psychological therapies, asking whether there was any contest between the two modes of treatment. At the time, studies of psychosocial interventions were plagued with multiple problems and the field of psychosocial research in dementia was in danger of losing direction, or becoming marginalised and consigned to history. Despite this, in practice there was an increasing recognition of the need to improve quality of life, and clinical services promulgated a wide variety of activities and interventions which generally had little or no evidence base. The typical problems of trials at that time included small sample sizes, poorly defined interventions, lack of a theoretical underpinning, inadequate design and an ongoing debate about what was a ‘therapy’. A wide variety of standardised and non-standardised outcome measures had been used, making even comparison between similar interventions problematic. The relative lack of funding for psychosocial research contrasted with the major investment in drug research by the pharmaceutical industry. Reference Moniz-Cook, Vernooij-Dassen, Woods and Orrell2 The editorial laid out a framework for future studies of psychosocial interventions in dementia modelled on the design of high-quality drug trials, including: a clear theoretical framework; robust replicable designs; large multicentre randomised controlled trials (RCTs); standardised outcome measures covering cognition, behaviour, activities of daily living and quality of life; and cost-effectiveness evaluations. In 1999, in response to this need, INTERDEM, Reference Moniz-Cook, Vernooij-Dassen, Woods and Orrell2 the European network of dementia care researchers, was established, with a mission to pioneer high-quality research studies by supporting a critical mass of expertise, and developing high-quality pan-European research into timely interventions in dementia care from early recognition to end-of-life care.
In the past few years there has been remarkable progress heralding a new generation of psychosocial interventions rigorously developed and evaluated, with many studies following the seminal Medical Research Council guidance on complex interventions. 3 In particular, significant progress has been made with major RCTs improving cognition, Reference Spector, Thorgrimsen, Woods, Royan, Davies and Butterworth4 activities of daily living, Reference Graff, Vernooij-Dassen, Thijssen, Dekker, Hoefnagels and Rikkert5 mood Reference Teri, Gibbons, McCurry, Logsdon, Buchner and Barlow6 and behaviour. Reference Livingston, Johnston, Katona, Paton and Lyketsos7 A number of systematic reviews Reference Livingston, Johnston, Katona, Paton and Lyketsos7–Reference Olazarán, Reisberg, Clare, Cruz, Peña-Casanova and del Ser9 have comprehensively evaluated the evidence and highlighted areas for further research. There is also growing evidence on interventions that can help delay nursing home placement which have been largely based on counselling and support programmes for carers and people with dementia. Reference Spijker, Vernooij-Dassen, Vasse, Adang, Wollersheim and Grol10,Reference Mittelman, Haley, Clay and Roth11 More recently still, the effectiveness of psychosocial interventions in long-term care has been evaluated Reference Vernooij-Dassen, Vasse, Zuidema, Cohen-Mansfield and Moyle12 through an appraisal of research reviews. This found benefits for behaviour management techniques, cognitive stimulation and physical activity. The systematic reviews so far have concentrated on quantitative data derived from analyses of RCTs or other trials. This has enabled a considered assessment of the clinical effectiveness of interventions in relation to defined outcomes but has told us less about the general characteristics of successful interventions and the best context for them to operate within. Qualitative studies can provide an understanding of the various difficulties inherent in translating psychosocial interventions from RCTs into practice, and can also help identify the barriers to implementation and how to overcome them.
Improving quality in care homes
In this issue, Lawrence et al Reference Lawrence, Fossey, Ballard, Moniz-Cook and Murray13 describe a rigorous meta-synthesis of qualitative studies of psychosocial interventions in care homes which advances our understanding of how to improve dementia care. Although as a qualitative approach the methods do not allow the results to be presented in more familiar terms such as effect size or numbers needed to treat, the process of synthesis was able to generate common characteristics of interventions which appeared to be beneficial. The interventions stimulated conversation and enhanced relationships often through enjoyable activities such as music and dance, allowing people to ‘connect with others’; the activities also allowed people to make a meaningful contribution such as sharing memories and stories. Interventions that involved the family or allowed the staff to get to know the person better enabled staff to see beyond the illness, develop their relationship, and better understand the meaning of the person's behaviour. However, the fact that for various activities people were entirely reliant on staff illustrates the deep lack of autonomy for many care home residents. Music and dance activities needed preparation and staff were even gatekeepers for using the ‘therapeutic’ garden. Lack of resources and low staffing levels were a concern, and sometimes staff did not think that the interventions justified the extra effort needed, felt they had ‘nothing more to learn’, or were unsettled by having to deal with people from ‘the university’. The prioritisation of basic physical care, paperwork and health and safety issues highlights concerns about the ‘industrialisation’ of the care process, where the person with dementia may be dealt with as a set of tasks rather than as an individual with their own values and preferences. Although conclusions such as ‘the successful implementation of psychological interventions is also a question of resources and time’, Reference Lawrence, Fossey, Ballard, Moniz-Cook and Murray13 and ‘psychosocial interventions must be implemented in person-centred care’ Reference Lawrence, Fossey, Ballard, Moniz-Cook and Murray13 are nothing new, they are needed here to provide a proper context.
Making psychosocial interventions work
Echoing the themes for future research in the INTERDEM manifesto, Lawrence et al's study provides a synthesis of evidence and a better understanding of the active components of complex interventions. Reference Moniz-Cook, Vernooij-Dassen, Woods and Orrell2 Despite this, it tells us little about which specific interventions might work, their comparative effects, or how they could be implemented in practice. Thus in some ways the results may be more useful as a contribution both to the theory and development of new interventions, or for the modification of existing interventions to enhance their utility. As stated, there is a need for future RCTs to include qualitative work to better understand how interventions work. But even for psychosocial interventions shown to be both clinically effective and cost effective, there are a number of obstacles to getting them into widespread practice. Many interventions have either no practice manual or one that is so poorly specified that the intervention cannot be reliably replicated in practice. Training may be hard to access or not widely available. Even with a manual and training, the lead researchers may lose interest and move on to other projects, particularly if no resources for an implementation study are forthcoming. In contrast, drug companies devote very considerable resources not only to drug development and clinical trials, but also to publicising the study results, and to promoting the use of the drugs in practice. However, whereas drugs have a daily cost, the expertise derived from manuals and training can be used on a whole series of patients. The new generation of psychosocial interventions, a number of which have been shown to be effective in practice, can often provide excellent value. There is a pressing need for further research to promote implementation in practice.
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