Title: Personalisation of exercise for people with dementia: What works for whom, under what circumstances and why?
Funder: Health Education England

Abstract: Research question Personalisation of exercise interventions for people with dementia: what works for whom, under what circumstances and why? Background In the UK, dementia affects over 850,000 people, costing the NHS 4.3 billion and society overall 26.3 billion every year. People with dementia are less active, have a higher risk of falls, and are more dependent compared to age-matched populations. Specific exercise interventions have demonstrable impact on these outcomes, however, dementia symptoms intercede and make participation difficult. A theoretical model is required to understand how to make standard exercises personalised to someone with dementia, thereby making a larger range of exercise interventions more accessible and achievable. Aim and objectives To get more people with dementia to benefit from exercise. The objectives are to: Develop an intervention co-design group Complete a systematic review of the literature on 'personalisation' of exercise for people with dementia Collect and analyse data from an existing exercise study involving 'personalisation' and exercise in people with dementia Model how personalisation of exercise can be used for people with dementia, under what circumstances, and why Develop and preliminary test a 'personalisation' shared decision-making resource in people with dementiaMethods Mixed-methods realist evaluation design. Realist evaluation is an innovative method in healthcare research that is founded in philosophical principles. Distinct work-packages will be conducted, each with specific aims and methods.Work-package 1 will generate a theoretical model of personalisation. A literature review will determine the evidence and provide candidate theories on 'personalisation' of exercise for people with dementia. A co-design group (n=12) will form and periodically meet throughout the project. Work-package 2 will collect retrospective and prospective data from an existing exercise-based cohort of people with dementia to test the proposed model. Data from dyad (n=10) and therapist (n=10) interviews, observations of exercise interventions (n=10), and outcome measures (n=184) will be collected and analyzed. Work-package 3 will synthesis and refine the model through dedicated synthesis and consensus processes. A nominal group technique (n=4 focus groups) will reach consensus on the model and produce a shared decision-making resource ready for feasibility testing in Work-package 4.Work-package 4 will test the feasibility of implementing the model. Implementation methods will initially determine the feasibility of the resource in one community group, before a knowledge transfer activity to start the wider dissemination of findings. Timelines for delivery Three years. A co-design group will initially and immediately be formed and will meet thrice per year to influence focus and findings. A project management group involving named research and clinical supporters and collaborators will meet monthly (virtual and face-to-face). Anticipated impact and dissemination People with dementia and their carers will have improved participation in exercise interventions following this research. Stronger legs, less falls, maintained independence, and improved quality of life will directly impact individuals and indirectly influence the wider social and healthcare services. A clear dissemination plan including academic (rehabilitation journals, international presentations), clinical (knowledge-transfer activity, professional magazines) and patient (Alzheimer's Society leaflets) focus has been developed.

Lay abstract: Aims of the research The aim of this research is to help more people with dementia stay healthy through exercise. By rigorously investigating how exercise therapy can be made personal to people affected by dementia, reliable and valid information can be included in a resource to support more people with dementia stay active and independent. Background to the research In the UK, dementia affects over 850,000 people and costs society overall 26.3 billion every year. People with dementia become more reliant on others, more prone to fall and less active as time goes on. One reason for this could be that specific dementia symptoms makes it difficult to do general exercise programmes, despite the clear and significant health benefits. There is growing recognition that one-size does not fit all when it comes to health services. Public group exercise classes are not universally accessible for people with dementia. There is increasing evidence that specific exercises have more positive impact than general exercise classes. Research is needed to find out how personalised exercise affects people with dementia and to explore how these can be incorporated into general classes that everyone can attend. Design and methods used The research will be completed in phases or work-packages over 3-years, with each building on the last. Realist methods will be used to model our understanding of why personalising exercise is helpful, who it might help, and in what circumstances. Work-package 1: A group of 12 experts in the field, including people with dementia and their carers, will be formed into a co-design group. They will meet throughout the project to make sure the developments are relevant for people with dementia and implementable. A review of the literature will identify existing information about personalised exercise programmes for people with dementia. Work-package 2: Data from 20 interviews, 10 observations and outcome measures from 184 people with dementia who are already involved in an exercise study, will be collected over 6 months. This information will tell us what people with dementia want and how an exercise programme can be personalised. Work-package 3: Information will be combined into a draft resource and prioritized using a consensus research method called Nominal Group Technique. A group of experts will be involved during 4 focus groups. It will take into account the opinion of the person with dementia and the person supporting them (such as a carer or physiotherapist) to make a shared decision on what exercise to do. Work-package 4: The resource will be shared with the general population, starting with a small community that supports people with dementia where it will be studied using implementation methods. Findings will be incorporated into the resource for wider use. Patient and public involvement People with dementia and their carers have already been involved with developing this research plan. Exercise instructors from, and people with dementia attending, University of Nottingham Sport were consulted on the impact of the project during three visits. Alterations to the project design were made following a presentation to a University-hosted group of research active older adults. Mr Ken Scott read the proposal and will be involved throughout the research process as a PPI representative. Co-design is fundamental to the project and will give people with dementia and their carers a strong voice in the development of the resource.Dissemination Disseminating the research findings is important and a plan has been developed. Standard academic routes to pass along information (such as articles and presentations) will be used alongside social media, presentations, visits and activities to inform people with dementia and their carers, exercise providers, public health, charities, and healthcare providers.

Research activity codes: 6.7 PHYSICAL;7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL