Spring Speakers Series: Promoting Activity, Independence and Stability in early Dementia and Mild Cognitive Impairment (PrAISED)
Professor Rowan 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. He spoke at the BGS Spring Meeting 2018.
Why diagnose dementia? And why diagnose dementia early? Because we want to do something to make lives better? If so, what?
People living with dementia are vulnerable to a cascade of failing abilities, inactivity, deconditioning and crises from which they may not make a full recovery. Most people living with dementia are, by definition, frail – prone to deterioration and adverse events. The average age of diagnosis is about 85. Ideally early intervention should preserve activity and independence and reduce risk, including risk of the commonest adverse event, falls. Yet the ‘offering’ of health service in response to a dementia diagnosis is painfully thin – cholinesterase inhibitor drugs, cognitive stimulation therapy and a dementia advisor maybe.
PrAISED is a National Institute for Health Research (NIHR) Programme, now in its third of six years (Harwood et al). Programmes are linked packages of work, with a focus on early patient benefit, but which allow for flexibility and development work before intervention evaluation. This has allowed us to explore the causes of functional deterioration in dementia, service models to avoid this, how best to encourage motivation and adherence to an activity programme, the nature and impact of therapy and how to model economic outcomes.
An early focus was falls prevention, and the potential of exercise to preserve or improve cognition, activities of daily living, mood and wellbeing. In keeping with the findings of others, interview work revealed that people living with dementia and their family carers did not acknowledge the likelihood of falling. This is despite risk being doubled from the very earliest stages, and restriction of activity in the name of ‘safety’ being common. Maintaining activity, independence and social contact were seen as more relevant goals; we therefore changed our focus from falls to activity, whilst being aware that safe activity is important. The intervention is exercise-based, but activity-directed, with professional input from both physiotherapy and occupational therapy. It is targeted, tailored, moderately intensive and progressive.
We developed a draft intervention (Booth et al) and then ran a 60-patient, three-arm feasibility trial in Nottingham and Derby. This allowed us to learn about running a trial, implementing the intervention in practice, and also to explore what was required for successful participant engagement and adherence.
People with dementia face challenges in engaging. Memory, planning and initiation can all be impaired. The role of executive dysfunction is thought to be especially important. Some have family carers living with them or nearby, others do not, and family carers may be reluctant to be seen to nag or take the role of ‘personal trainer’. Co-morbidities and previous experience of exercise and vary. We have used behaviour change theories to frame and explore this, considering capability, opportunity and motivation. We have explored different levels of human supervision, but also tailoring to abilities, interests, social resources and co-morbidities and various prompts. Experience so far has been that the programme is welcomed, albeit with new levels of creativity demanded of therapists when ambitious goals are set by relatively well-functioning individuals.
The flexibility of a Programme allows us to explore how therapy works, therapist effects, and communication and motivation styles. The realist evaluation philosophy asks ‘what works, for whom, under what circumstances, and why?’ This challenges many of the assumptions of researchers brought up in the tradition of simple clinical trials, but enables a broader and more meaningful analysis of practical health services. The mechanisms uncovered should be more generalizable than simple, but limited and rigid, trial results. The infrastructure for this analysis is a large scale multi-centred trial, due to commence in September 2018, and to continue for 30 months.
Regardless of whether the trial is ‘positive’ or not, we will learn a lot about how functional problems arise for people living with dementia, what we can do about them, and how we might delay the onset of disability and dependency. That way we can help people living with dementia to live well for longer, and add to the possibilities for positive health gain on offer after a dementia diagnosis.