Psychosocial interventions in dementia care research: The INTERDEM manifesto

Introduction

Dementia is a biomedical, psychological and societal disability, which poses complex challenges that are different to those of many other disabilities. As a global health problem, it takes a heavy toll on people, society and the economy. Alzheimer's Disease International, using detailed population-based studies of the prevalence of dementia in different world regions (http://www.alz.co.uk/adi/pdf/prevalence.pdf), estimates that there are currently 30 million people with dementia worldwide, with 4.6 million new cases annually and projections for over 100 million affected people by 2050. As the population ages, the full costs will also escalate, thus making dementia an international priority. In 2008, during his term of EU presidency, French President Nicolas Sarkozy called for prioritising dementia and the development of a European-wide Alzheimer's plan and the EU Council of Ministers has also called for collaborative action on Alzheimer's disease research. As a follow-up to the October 2008 conference ‘The fight against Alzheimer's disease’ organised by the French EU Presidency, and in line with the 2009 Communication from the European Commission on ‘A European initiative on Alzheimer's disease and other dementias’, the Belgian Presidency of the EU has, from July 2010, initiated a forum to exchange best practices on societal responses to dementia.

However, despite two decades of intensive research in Alzheimer's disease and an active strategy for the recognition and monitoring of the pre-dementia stages (see Knopman et al., 2001, for the American Association of Neurology practice parameter), we are still some way away from a cure or a treatment which can prevent the disorder from worsening or significantly influence its course. Even if curative drug treatments were available, it is likely that the costs of these would be prohibitive, particularly for many developing countries at a time when the prevalence of dementia itself is set to increase in line with the escalating numbers of older people. There is a growing interest in psychosocial interventions in dementia care, but few have reached the stage of rigorous evaluation and even fewer have been widely implemented. In Europe, the diversity of languages and cultures act as an obstacle for developing, testing and implementing evidence-based psychosocial interventions. However, if psychosocial interventions have positive and cost-effective outcomes on cognition and quality of life and on rates of institutionalisation, there is potential for dissemination and wider implementation through written materials or manuals detailing intervention protocols. This is particularly relevant for developing countries, where staff can be trained to deliver interventions in settings where access to the anti-dementia drugs is poor or non-existent. The need for a rapid and substantial increase in the quantity and quality of psychosocial research in dementia care has therefore never been more urgent.

Psychosocial intervention research: A historical perspective

The idea that psychosocial interventions can be helpful has a history of half a century, when, following the introduction of Reality Orientation, researchers noted a change from hopelessness to hopefulness in people with dementia (Taulbee & Folsom, 1966) and a sense of hope in care staff (Powell-Proctor & Miller, 1982). In 1997, a review of the evidence base for early psychosocial interventions in dementia, funded by the European Commission, found just a handful of ‘gold standard’ randomised controlled studies (RCTs) which were of varying quality (Moniz-Cook & Wang, 1997–1999). Despite the developments of reality orientation in the 1980s, family care studies dominated the international literature. These were largely located in North America and Australia (Brodaty & Gresham, 1989; Mittelman, Ferris, Shulman, Steinberg, & Levin, 1996; Teri, Logsdon, Uomoto, & McCurry, 1997; Zarit, Anthony, & Boutselis, 1987), with the exceptions of a study from the UK (Hinchcliffe, Hyman, Blizard, & Livingston, 1995) and another from the Netherlands (Vernooij-Dassen, Huygen, Felling, & Persoon, 1995). RCTs of intervention for people with dementia were hard to identify, with just one study of cognitive stimulation noted in France (Breuil et al., 1994). However, controlled investigations of reality orientation in Italy (Zanetti et al., 1995) and memory clinic-based multi-component intervention in the UK (Moniz-Cook, Agar, Gibson, Win, & Wang, 1998) as well as single case studies of cognitive rehabilitation in Italy and Sweden (Josephsson et al., 1993; Zanetti et al., 1997) demonstrated that promising interventions were emerging.

By highlighting that the quality of many of these early studies was not strong, Orrell and Woods (1996) argued the case for large-scale RCTs of psychosocial interventions, which met the same methodological standards as industry-funded drug trials. Compared with drug studies, there were few studies of psychosocial interventions at the time, despite the strong conceptual case for the co-existence of both areas of research. There are a number of practical reasons for this (Woods, 2003). First, applied research of this type relies to some extent on how a given country provides services. This can affect how a representative sample is defined for the testing of a psychosocial intervention. Cluster designs are often the method of choice, but difficulties are encountered in multi-centre studies when even within a country there may be variations in the services that are provided. Other methodological obstacles include variation in therapist commitment, difficulties associated with ‘double blinding’, or establishing a ‘true’ baseline, or defining the ‘placebo’ condition and inadequate harmonisation on instruments for measuring outcome. Second, interventions or therapies need to be driven by concepts that arise from the psychological and social sciences. Often, these emerge as multi-component interventions which then need to be understood in terms of the relative strength of each component. Thus, defining ‘dosage’ in multi-component interventions is not straightforward. Third, concept-driven therapies or interventions need to be piloted and refined using concept-informed outcome measures before a definitive well-powered RCT can be carried out. Finally, where benefits are demonstrated in one setting, little is known about how the intervention can be systematically implemented into wider practice. The difficulty of translating RCTs into practice is not just a concern for psychosocial researchers, since reliance on group designs provides evidence of effectiveness for the ‘average’ patient, whilst in practice, clinicians are more interested in what will be effective for the specific, not the ‘average’, patient with whom they are working (Woods, 2003). A European multi-professional stakeholder meeting on the science of psychosocial interventions concluded that the full impact of psychosocial interventions in dementia in Europe had yet to be realised (Moniz-Cook & Wang, 1997–1999), due to a lack of internationally accepted evidence-based psychosocial therapies for people with dementia and their families, and also because research remained small scale, hampered by fragmentation and inadequate agreement on a strategy.

Psychosocial intervention research: The past decade

In 1999, in response to this need, INTERDEM (early and timely INTERventions in DEMentia), the European network of dementia care researchers, was established. Its mission was to move forward from the meagre and often fragmented research studies, by supporting a critical mass of expertise and developing high-quality pan-European research in timely interventions in dementia care from early recognition to end-of-life care. The underpinning rationale for INTERDEM was that Europe, with its diverse cultural, languages and societal identities was a critical arena for research. Collaboration across countries to investigate how people with dementia and families might be supported to enhance well-being and maintain a good quality of life was seen as a way to address the complexity that dementia brought to policy and practice. One obvious difficulty for psychosocial research in general and European research in particular was a lack of investment compared with the pharmaceutical industry. Also, RCTs were easily missed if published in a language other than English (Günther, Fuchs, Schett, Meise, & Rhomberg, 1991) or were difficult to evaluate if published as short reports (Vernooij-Dassen et al., 1995). Furthermore, replication was difficult since intervention protocols were not available, either because they were not clearly defined or not available as manuals or because protocols were not translated from one language to another.

INTERDEM today functions as an interdisciplinary European collaborative research network with a mission: to develop and carry out pan-European research on Early, Timely and Quality Psychosocial Interventions in Dementia; to actively disseminate this research to enhance practice and policy; to enhance the quality of life of people with dementia and their supporters across Europe; and to place them at the heart of European research and practice, by actively involving them in developing these activities. The INTERDEM strategy involves five activities: arranging annual conferences and meetings to share and develop new research; organising symposia at European conferences; integrating fragmented knowledge through collaborative pan-European publications; collaboration in grant applications for high-quality European research; and building research capacity through collaborative PhD projects and student exchanges. In the past 10 years, an active research network has developed, which currently includes 18 European countries (each with a named coordinator), 63 research centres and 84 members from a range of disciplines including medicine (Psychiatry, Neurology, Geriatrics, General Practice and Medical Ethics), Psychology (including Clinical Psychology), Nursing, Medical Sociology, Occupational Therapy, Music Therapy, Physiotherapy, Dietetics and Social Work. Three EU funded research projects have been completed. The DIADEM (2002–2003) study on timely diagnosis and management of dementia across eight European countries found that the stigma associated with ageing and dementia accompanied by a sense that there is little to offer was a major obstacle for dementia care. In addition, dementia care services varied widely across Europe and dementia-related stigma was less prominent in countries with developed health services, although even in countries where facilities existed, some practitioners felt they had little to offer (De Lepeleire et al., 2008; Iliffe et al., 2005; Vernooij-Dassen et al., 2005). The AWARE (2002–2004) study of understanding awareness assessment and implications for early intervention in early stage dementia concluded that people with dementia can have intact awareness and for them psychosocial interventions might help in preventing the development of affective problems (Clare, Markova, Verhey, & Kenny, 2005). Finally, the EuroCoDe project (2006–2008) developed guidelines on psychosocial interventions in dementia care (http://www.alzheimer-europe.org/EN/Our-Research/European-Collaboration-on-Dementia/Psychosocial-interventions) and has now extended its work to develop quality indicators for psychosocial interventions at a pan-European level. A new study, IMPACT – the implementation of quality indicators in palliative care, will commence in 2011 (see http://interdem.org/ for full details of members and projects).

Since 1999, the INTERDEM collaboration has produced more than 25 peer-reviewed collaborative research papers. Examples of projects that have contributed to the body of knowledge in dementia care include an update on the knowledge base for primary care physicians (Woods et al., 2003), special issues in peer-reviewed journals on early psychosocial interventions (Aging & Mental Health 7, 1, 2003) and psychosocial interventions in primary care (Dementia: International Journal of Social Research and Practice 5, 3, 2006), harmonisation of outcome measures (Moniz-Cook et al., 2008) and the INTERDEM book ‘Early Psychosocial Interventions in Dementia Care: Evidence-Based Practice’ (Moniz-Cook and Manthorpe, 2009) which disseminates current research on psychosocial interventions across Europe for the use of practitioners.

The added value of European collaboration within a psychosocial research network is easy to see. First, experts are easily available and can thus facilitate easy access to information in many states (see for example EuroCoDe, http://www.alzheimer-europe.org/EN/Our-Research/European-Collaboration-on-Dementia). This can in turn stimulate initiatives to address high-level research problems, such as the harmonisation of outcomes (Moniz-Cook et al., 2008), publishing of manuals of effective interventions and overviews of existing interventions (Graff, van Melick, Thijssen, Verstraten, & Zajec, 2010; Moniz-Cook & Manthorpe, 2009, 2010; Schweitzer & Bruce, 2008, 2010; Spector, Thorgrimsen, Woods, & Orrell, 2005, 2006; Werheid & Thöne-Otto, 2010). Second, it offers a forum for exchange of new insights on challenging areas of enquiry (Clare et al., 2005). Third, there can be greater and more intensive collaboration between pan-European researchers since they are not obstructed by the competition that can occur at a national level, although mature networks can also foster within-nation collaboration. This is seen in the range of ongoing multi-centre studies outlined later, particularly in the UK and the Netherlands. Fourth, the obstacles of language diversity can be overcome as is seen in the translations of studies (see the AWARE project Clare, Romero, & Wenz, 2004; Clare et al., 2004, 2005; Verhey et al., 2004), intervention manuals (Graff et al., 2010; Moniz-Cook & Manthorpe, 2009, 2010; Schweitzer & Bruce, 2008, 2010; Spector et al., 2005, 2006; Werheid & Thöne-Otto, 2010) and measurement instruments (for example see CANE – Fernandes et al., 2008; Orrell & Hancock, 2004) across countries and languages. Finally, European collaboration provides the opportunity for comparison between countries (De Lepeleire et al., 2008; Iliffe et al., 2005; Vernooij-Dassen et al., 2005) in order to advance knowledge on cultural differences and thus develop strategies for transferring interventions across nations.

The future of psychosocial interventions in dementia care

In the past psychosocial interventions for dementia have frequently been developed without a clear theoretical framework, or proper consideration of the evidence from research or clinical practices. Our previous work has shown that a synthesis of the research evidence can be used to develop an evidence base for effective intervention. The research arena has extended beyond family care support as is seen by the development of group cognitive stimulation therapy (CST). The French study of Breuil et al. (1994) was conceptually extended by researchers in the UK, using systematic reviews of the literature on reality orientation and reminiscence therapy (Spector, Orrel, Davies, & Woods, 2001). Its evaluation within a single-blind RCT (Spector et al., 2003) reports benefits in cognition comparable to those of the anti-dementia drugs, additional benefits in quality of life for people with dementia, and evidence for cost effectiveness (Knapp et al., 2006). There are also emerging studies on maintenance CST (Aguirre et al., 2010; Orrell, Spector, Thorgrimsen, & Woods, 2005). In Italy, CST has been delivered on an individual basis by family carers (Onder et al., 2005) and in Spain interactive multimedia CST training has been piloted (Tárraga et al., 2006). In the UK, group CST is now recommended in evidence-based practice guidelines (see the NICE–SCIE Guideline for the management of dementia in the UK, www.nice.org.uk). Conceptually distinct from CST is cognitive rehabilitation which involves assisting individuals with dementia to attain their personally relevant goals by using their strengths to compensate for impairment. This has recently been evaluated within a three-arm single-blind study, with reported benefits in goal performance, satisfaction and evidence of restoration of some aspects of function (Clare et al., 2010). In the USA, a study of exercise and training family carers in behaviour management skills had a positive impact on physical health and depression in people with dementia (Teri et al., 2003) and a recent study of group support in early stage dementia has demonstrated promising quality of life outcomes (Logsdon et al., 2010).

Compared with a decade ago there are currently a number of well-designed multi-centre funded RCTs of psychosocial interventions in nations across Europe. The UK Medical Research Council (MRC) methodology for complex interventions (MRC 2008, www.mrc.ac.uk/complexinterventionsguidance) has provided an important framework for overcoming some of the obstacles to high-quality psychosocial intervention research that were described previously. Collaborations to develop methodological rigour have resulted in a systematic growth of studies in each of the MRC methodological stages including theory and modelling, feasibility/exploratory pilot, definitive multi-centre RCTs of effectiveness/cost-effectiveness and monitoring/implementation studies. In addition to the cognition-orientated studies outlined above, concept-driven interventions for the person with dementia, their family and practitioners who provide support have been rigorously evaluated in many countries including the Netherlands, the UK, Norway, Finland and Belgium (Charlesworth et al., 2008; Dröes, Meiland, Smitz, & van Tilburg, 2004; Downs et al., 2006; Eloniemi-Sulkava et al., 2009; Fossey et al., 2006; Graff et al., 2006; Moniz-Cook et al., 2008; Schoenmakers, Buntinx, & De Lepeleire, 2010; Ulstein, Sandvik, Brunn, & Engedal, 2007). Collaboration has allowed developments across the language barriers as is seen in the Community Occupational Therapy intervention that was rigorously tested in the Netherlands with outcomes published in both English and Dutch (Graff et al., 2006, 2007) and translated to German for evaluation in a multi-centre randomised controlled study (Voigt-Radloff et al., 2009). The aspiration to place people with dementia and their supporters at the centre of European research has commenced with the development of quality indicators (Perry et al., 2010) including those for psychosocial intervention (Vernooij Dassen et al., 2010). These provide a template for standard setting to enhance patient and carer well-being as well as practitioner education. A number of studies are ongoing in the UK (Iliffe et al., 2007–2012; Manthorpe et al., 2008–2010; Moniz-Cook et al., 2007–2012; Orrell et al., 2007–2012, 2010–2013; Woods et al., 2009), the Netherlands (Draskovic, Vernooij-Dassen, Verhey, Scheltens, & Rikkert, 2008; Joling et al., 2008; Meiland, Dröes, de Lange, & Vernooij-Dassen, 2005; Perry et al., 2010; van Vliet et al., 2010), Germany (Kurz et al., 2008), France (Dartigues, 2008–2010) and Denmark (Waldorff et al., 2010). These are wide ranging in their remit including reminiscence therapies, new developments in CST, interventions for palliative care and challenging behaviour, psychological therapies for family carers, educational interventions for practitioners and implementation studies.

Manifesto

INTERDEM meets the need for a sustainable and coherent interdisciplinary alliance to provide an infrastructure for current and future research and educational collaborations. In order to consolidate and extend the achievements of that past decade, research needs to continue to focus on patient empowerment, theory and methods and on the European perspective and its potential to transfer what has been learned to the developing nations worldwide.

Patient empowerment

1.

Psychosocial interventions in dementia care encompass interventions involving interaction between people to improve psychological and/or social functioning, including well-being and cognition, interpersonal relationships and everyday functional abilities, such as activities and daily living skills. Although research is stronger that it was 10 years ago, the need for a continued flow and development of creative ideas particularly those that enhance a sense of purpose and pleasure in the person and family carer remains important. These can then be evaluated, refined and disseminated.

2.

Dignity and autonomy are critical factors in high-quality dementia care. Studies need to investigate the concept of reciprocity in giving and receiving support to facilitate autonomy and dignity in people with dementia. In addition, interventions which are themselves free from stigma and thus enhance social integration for people with dementia and their families need to be developed and tested.

Theory and methods

1.	Translational research is required including studies into psychological mechanisms that might be associated with effective interventions. The synthesis of existing evidence to develop theoretical foundations for new and improved interventions is also important if a better understanding of the active components of complex interventions is to be achieved. This will then allow for the development of more specific, effective and feasible psychosocial interventions.
2.	There is a recognised need to improve methodology in dementia studies, including the development and evaluation of concept-informed outcome measures to assess the effectiveness of psychosocial interventions. This is particularly urgent for the range of economic research studies including cost utility and process utility to assess the costs and the value of interventions.
3.	The MRC guidance for complex interventions is an excellent framework for developing and evaluating ‘gold standard’ psychosocial interventions in dementia care but to move the research agenda forward and make psychosocial interventions available on a wider scale, new methodologies for implementation are required.
4.	To ensure that the evidence for what works in dementia care can be used to transform both practice and services, there is a need to develop, implement and evaluate training and education in dementia care by drawing on the literature on diffusion of innovation, studying the obstacles, facilitators and factors that influence decisions associated with use and uptake of psychosocial interventions in practice, and addressing relevant personal and organisational variables across Europe.

International perspectives

1.	Studies are needed to compare structures, processes, and outcomes across countries with similar demographics and health systems to improve models of service delivery and carry out empirical data comparisons between services for people with dementia in collaboration with groups in Canada (Dementia-NET/The Banff Collaboration), and Australia (Dementia Collaborative Research Centres).
2.	Research is needed to translate and implement what been achieved in one country to the cultures and contexts of other nations. As experience grows and stabilises across European countries, there will be scope, in the next decade, for translation of established psychosocial interventions to the developing nations.
3.	Building research capacity through collaborative PhD projects and student exchanges needs to be consolidated and extended to developing an international school for psychosocial interventions research in dementia care.

Conclusion

Much has been achieved over the last decade in demonstrating that psychosocial interventions can be as effective as pharmacological therapies (Olazaran et al., 2010).

Further work is now required both in terms of methodological development and implementation science for their full potential to be realised. INTERDEM and related research networks can play a key role in taking this agenda forward.

Acknowledgements

Interdem Board: Frans Verhey (The Netherlands), Steve Iliffe (UK), Manuel Franco and Pablo Gomes (Spain), Rabih Chattat (Italy) and the following Interdem members: Jill Manthorpe (UK), Inge Cantegrill and Kevin Charras (France), Rose Marie Droes, Franka Meiland, Maud Graff and Hein van Hout (The Netherlands), Frans Waldorff (Denmark), Katja Werheid (Germany), Ulla Eloniemi-Suklava (Finland) Ingun Ulstein (Norway) and Jan De Lepeliere (Belgium).