Promoting Activity, Independence and Stability in Early Dementia (PrAISED)

Professor Rowan H Harwood is a geriatrician at Nottingham University Hospitals NHS Trust, and the University of Nottingham, with particular interests in delirium, dementia and end of life care, who maintains an active portfolio of research. He tweets @RowanHarwood 

Can exercise-based therapy prevent or delay disability and dependency in those in the early stages of dementia?

We have heard the drum beat of gloomy messages. We cannot continue to cope with ever greater demands for health and social care. Prevention is better than cure, but the NHS is ‘on the hook’ for failing to take prevention seriously.

There is a semblance of a response. Sustainability and Transformation Plans emphasise prevention. We know that some groups, such as people with frailty or dementia, are at risk of crises and functional decline, and on the cusp of dependency and need for services. It makes sense to identify people at risk earlier, and intervene.

Recent years have seen a drive to identify people with dementia earlier, but some have asked to what purpose? What do we have to offer? We have some drug treatments of modest efficacy. Likewise Cognitive Stimulation Therapy has definite benefits. Beyond that we can only make plans to avoid unwanted care and minimise treatment burden. Mental health and social care follow up are largely reserved for the severe end of the problems spectrum.  We need to do more.

The average person diagnosed with dementia is in their mid-eighties.  Physical co-morbidity is common, and dementia itself affects gait and balance, leading to falls. Affected individuals can become trapped in a spiral of decline, as they struggle with activities, fear falls, and progressively do less and less. We have neglected the impact of physical functioning in the experience of dementia. Exercise-based programmes can maintain activities and prevent falls, yet people with dementia understandably resist seeing themselves as vulnerable or in need of help.

PrAISED is an NIHR research programme, based in Nottingham, that aims to keep people with mild or early dementia independent for longer, to reduce falls and to increase their activity levels. Over the past 5 years we have developed a multi-component intervention including professionally-tailored exercises, functional activities, dual-task training, practical advice on risks, adaptations to avoid falls, and support to do activities and exercises regularly.

We recruited 60 participants to a feasibility trial in Derby and Nottingham to explore if the intervention is acceptable to participants and carers, how to maximise uptake and adherence, and test research methods. We randomised them to one of three groups: a high-intensity support group, receiving 50 visits over 12 months from physiotherapists, OTs and rehabilitation support workers, tapering over time; a moderate intensity support group, participants receive nine visits from physiotherapists and OTs over three months, with encouragement to continue after supervision ceases; and a control group which receives a basis falls assessment.  Follow up is ongoing, but we are already planning ahead for a larger trial, to commence in September 2018.

The challenge is to gather high quality evidence on effectiveness and cost effectiveness, across a range of outcome measures. But also to pose a question: how serious are we about prevention, and if it takes considerable professional support to enable people with dementia to benefit, are we willing as a health service and society to provide it?

This blog presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Reference Number RP-PG-0614-20007). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.