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  • Executive Summary

    Dementia can bring behaviour that families and staff find difficult to understand and cope with. These are described by medical experts as behavioural and psychological symptoms in dementia (BPSD). When family and staff have difficulty in managing BPSD, psychologist experts describe these as `challenging behaviour` or ‘behaviours that challenge’, since the way problems are perceived and thus managed, can contribute to subsequent quality of life of the person and the family. BPSD, particularly apathy, agitation and aggression are also seen by psychologists as an expression of distress, by the person with dementia. BPSD is often treated with drugs which are known to have harmful side effects and often do not work. Guidelines suggest that psychological treatments should be used first, with drugs used as a last resort. However drugs are commonly the first port of call in both primary and specialist health services. This may be due to inadequate numbers of clinical psychologists available to provide psychological therapy - in this case the treatment of choice is 'functional analysis', i.e. the analysis of behaviour in terms of the function which that behaviour serves for the person. This requires training akin to 'detective work' to elucidate the cause of behaviour.

    Training caregivers in methods of functional analysis can increase their awareness of the multiple functions underlying a particular behaviour and potentially equip them with the skills necessary to determine which function may underlie the behaviour of a particular person at a particular time. New methods of providing support to sustain staff training are needed to allow interventions that are more closely matched to the reasons underlying the behaviour in question, since external agents such as clinical psychologists, who have these skills, are rarely available. It is hoped that the psychological intervention being investigated in this programme of research will help families and staff understand why a person may be exhibiting ‘behaviours that challenge’.

    This programme of research aims to examine whether providing family and staff carers with training and support in behaviour management for dementia symptoms, enables them to improve their coping strategies, minimise behavioural symptoms and thus enhance well being in older people with dementia and their carers. Web-based training and decision support systems will be developed: a) to assist care home staff to access knowledge (functional analysis) and behaviour management support for a range of challenging behaviours; and b) to assist community practitioners to support family caregivers at home. These systems will include the complexity of bio-medical, social and environmental factors that need to be taken into account in behaviour management of dementia.

    The evaluation of these systems will comprise of two pragmatic cluster randomised trials across: Trial 1) residential and nursing care homes; and Trial 2) family carers supported by practitioners in the community. In each of the two trials half will receive the experimental intervention, i.e. the computerised decision support system, and half will act as the control. The two trials will examine clinical and quality of life outcomes as well as cost consequences of functional analysis in the management of challenging behaviour. A third study may be conducted later in the Programme to evaluate whether telephone access to practitioners using the decision support software can assist family carers and care home staff to reduce behaviours that challenge.