Standing up for Dementia: exchanging knowledge on developing a patient and professional pathway for physical activity and exercise.

Lead Research Organisation: Newcastle University
Department Name: Institute of Cellular Medicine

Abstract

Dementia is currently a major healthcare problem. As our population ages, the number of people suffering from dementia increases yearly. This comes at both a large human and financial cost. Currently, there is no cure for dementia but medication can help to delay the progress of the disease although this has varying degrees of success - other treatment options which involve the patient more directly in their own care are therefore a necessity.

Mild cognitive impairment (MCI - defined as a level of cognitive impairment which although noticeable, does not impact sufficiently on an individual's life to be diagnosed as dementia) is seen a stepping stone in the development of dementia, with large numbers of people diagnosed going on to develop dementia over the coming years. One of the main symptoms of dementia and MCI is the detrimental effect that it has on cognitive processes (for example memory, planning, perception and orientation). Within an elderly age group, research suggests that increasing physical activity can have beneficial effects on cognitive processes in later life and this may also be the case in individuals with MCI. This can also be protective as people who are more physically active in their younger years are at less risk of developing dementia as they get older.

Unfortunately, many of the studies carried out so far in groups with MCI have not been performed to a high methodological standard, often with mixed groups of dementia participants with different diagnoses of dementia (it is likely that different types of dementia will respond differently to physical activity, just as they do with medications prescribed), in different care settings and without comparable cognitive assessment tools. This means that there is no current clinical advice for individuals with MCI, their caregivers and healthcare professionals as to what sort of physical activity may be beneficial to them as an alternative to current treatments.

We propose to develop a behaviour change program which promotes the use of physical activity to maintain cognitive function and prevent cognitive decline in older adults at risk of dementia (those with MCI). This will aim to change the behaviour of both the individual with MCI and the healthcare professionals responsible for their care with the ultimate aim that physical activity can be offered as a healthcare 'prescription' to individuals.

Planned Impact

The Movement as Medicine for Cognition project has significant potential for impact within the fields of promotion of wellbeing and disease management, with a clear and transparent route to that impact being realised. The potential impacts of the project and the routes to realisation are as follows:

1: PROVIDE A PATIENT AND PROFESSIONAL DEVELOPMENT PATHWAY FOR PHYSICAL ACTIVITY AND EXERCISE IN THE MANAGEMENT OF MCI: We will provide an alternative treatment option for healthcare professionals and patients under their care with the aim of promoting cognitive performance. We will do this through the use of experience based design of professional and patient MCI management. This will result in an accessible resource for health care professionals to utilize in clinic with clients with MCI and will engage the client in their own care package. This will be a free and widely accessible tool.

2: PROVIDE A PATIENT AND PROFESSIONAL DEVELOPMENT PATHWAY FOR PHYSICAL ACTIVITY AND EXERCISE IN THE PREVENTION OF DEMENTIA: We will address an unmet need for the provision of a behavior change program which promotes physical activity as a feasible and effective disease prevention strategy in healthy older adults and those at risk of developing dementia. We will do this through the use of experience based design of professional and patient dementia prevention. This will result in an accessible resource for healthy older-age adults providing advice and guidance on undertaking physical activity with the aim of maintaining cognitive function. This will be a free and widely accessible tool.

This project will therefore have impact for the health and wellbeing of the general public and patients within 12 months, providing physical activity advice informed by well conducted research findings. This will provide training to healthcare professionals in the use of the Movement as Medicine for Cognition package and will be developed with their input. Patients will play a more active role in their own disease management and within a healthy group, benefits of physical activity will also result in reduced costs to the NHS in other healthcare areas (as the reduced rates of a wide range of diseases though physical activity has bee widely reported). The NHS will also benefit from a reduction of resource dependence through lower conversion rates from MCI to dementia and the current burden placed on nursing homes will hopefully be alleviated in the longer term.

Publications

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Avery L (2017) Lifestyle Behavior Change in Patients With Nonalcoholic Fatty Liver Disease: A Qualitative Study of Clinical Practice. in Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association

 
Description We have undertaken a series of co-design workshops with people at risk of developing dementia or at the early stages of dementia. We have described the lengthy and confusing lived experience of being diagnosed with dementia. This pathway provides significant opportunities to support lifestyle stings which, based on scientific evidence to date, will have a marked impact on the progression of dementia.

Through our partnership with the Alzheimer's Society we have identified three key places (touch points) in there service pathway lifestyle changes; at risk, during the diagnosis process, or at the point of diagnosis. Currently, there is little of no application of best practice behavioural science for lifestyle during this process.
Exploitation Route There is a clear need to support people transitioning through the journey of being at risk of to having dementia to make lifestyle changes. Currently, the healthcare system s focussed on diagnosis and is not equipped to support people make lifestyle changes. There are significant opportunities to provide people with support to make lifestyle changes whilst being at risk, through the diagnosis and when diagnosed with dementia. This may help not only induce physiological changes which may modify disease progression and risk but also empower patients and give them control at a point where there is often distress and concern.
Sectors Digital/Communication/Information Technologies (including Software),Education,Healthcare,Leisure Activities, including Sports, Recreation and Tourism,Government, Democracy and Justice

URL http://movelab.org/research/physical-activity-exercise-and-early-dementia/
 
Description We have been working with the Alzheimers Society to develop new lifestyle pathways to help people at risk of or who have early stage dementia. These service pathways are the first of their type in the UK and hold the potential to impact upon the care of people at risk of or who have early cent and their carers. These pathways will undergo clinical trial in 2015.
First Year Of Impact 2014
Sector Digital/Communication/Information Technologies (including Software),Healthcare
Impact Types Cultural,Societal,Economic

 
Description Department of Health Physical Activity Taskforce
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
 
Description Case Studentship
Amount £98,180 (GBP)
Organisation Engineering and Physical Sciences Research Council (EPSRC) 
Sector Public
Country United Kingdom
Start 09/2013 
End 08/2016
 
Description European Institute for Innovation and Training
Amount € 743,000 (EUR)
Organisation EU-T0 
Sector Public
Country European Union (EU)
Start 09/2016 
End 08/2018
 
Description NIHR BRC Industrial Collaboration Award
Amount £125,000 (GBP)
Organisation National Institute for Health Research 
Department NIHR Newcastle Biomedical Research Centre
Sector Academic/University
Country United Kingdom
Start 08/2013 
End 09/2015
 
Description Be smart, exercise your heart 
Organisation Alzheimer's Society
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution We are actively collaborating with the Alzheimer's Society on developing and implementing lifestyle service pathways for people at risk of or who have dementia.
Collaborator Contribution the Alzheimer's society have a wealth of experience of working with people with memory problems and their care teams. The Society have been superb in providing insights into care and also assisting with the development of the service pathways and linking with end users and their care teams.
Impact This project is multi-disapinary and is involving service designers, graphic designers, clinical care teams and physiotherapists. We are enhancing existing digital services in a co-design project with and for people with memory problems. These eHealth and mHealth tools will undergo clinical evaluation in 2015.
Start Year 2013
 
Description Knowledge Transfer Opportunity - Standing up for Dementia 
Organisation Alzheimer's Society
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution We have worked with the Alzheimer's Society to better understand the lived experience of having dementia and also to evaluate how to develop their materials into a service that can be used to help prevent and manage dementia.
Collaborator Contribution The Alzheimer's Society have provided links with the community of people at risk of or with early dementia to explore the lived experience. They have allowed us to work with their written material to adapt it in order to explore how a lifestyle service platform can be developed to maintain brain health. the Alzheimer's Society are also working with us to help undertake a pot feasibility of the lifestyle service platform on cognitive function.
Impact We have three main outcomes of this collaboration: 1) We have provided a report on the lived experience of having dementia or being at risk of dementia after undertaking co-deisgn workshops with patients, at risk groups and care teams. Through this we undertook futures workshops on how to adapt these service platforms to provide lifestyle service support as part of this pathway. 2) We have adapted multi-media content from the Alzheimer's Society into the e-Health / m-Health platform called Health Guardian 3) We are undertaking a pilot feasibility trial (including qualitative evaluation) of the lifestyle service platform for people at risk of dementia.
Start Year 2013
 
Description Liverpool Univeristy CIMA 
Organisation University of Liverpool
Country United Kingdom 
Sector Academic/University 
PI Contribution We are collaborating with Liverpool University as part of the MRC / ARUK Centre for Integrated Musculoskeletal Ageing on a study looking at sedentary behaviour and muscle ageing.
Collaborator Contribution Both sites are contributing clinical facilities and support.
Impact Research still active.
Start Year 2013
 
Description Philips Case studentship 
Organisation Koninklijke Philips Electronics N.V.
Department Philips
Country Global 
Sector Private 
PI Contribution We are working with Philips to explore how technology can be used to help people with memory problems achieve and sustain a physically active lifestyle.
Collaborator Contribution Philips bring a wealth of experience in developing consumer medical products and helping people achieve a more active lifestyle.
Impact This project is multi-dizsaplinary involving engineers, designers, physicians and social scientists. The outputs of this collaboration will be finalised in 2015/16.
Start Year 2013
 
Title A Pilot Feasibility Study of Lifestyle in People at Risk of Dementia 
Description We have completed a lifestyle service pathway for people at risk of developing dementia. We will undertake an active comparator study for this (against brain training games) in Q2 2015 as part of the ESRC supported KTO. 
Type Preventative Intervention - Behavioural risk modification
Current Stage Of Development Refinement. Non-clinical
Year Development Stage Completed 2015
Development Status Under active development/distribution
Impact The notable impacts have come from underrating the lived experience of going through the diagnosis process for dementia. This protracted process provides enormous scope for supporting people with information and services which may have a direct or indirect impact. 
URL http://movelab.org/research/physical-activity-exercise-and-early-dementia/
 
Description BBC Documentary on Ageing 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact I led a three part documentary for the BBC on how to Age Well that was broadcast in 2017 and watched by in excess of 12million people in the UK and 5million overseas.
Year(s) Of Engagement Activity 2017,2018
URL http://www.bbc.co.uk/programmes/articles/2YTnV1QS0l6Gbkyf0FcKhM3/test-your-lifestyle-how-are-you-age...
 
Description BBC Documentary on cognition 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact I helped write, coordinate and deliver a BBC documentary looking at cognition and the role of lifestyle for the Trust Me I am a Doctor series.
Year(s) Of Engagement Activity 2015
URL http://www.bbc.co.uk/programmes/articles/54MwYnJLNvbHbT5KsBRg9Tv/the-big-brain-maintenance-experimen...
 
Description British Science Festival 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Type Of Presentation Workshop Facilitator
Geographic Reach National
Primary Audience Schools
Results and Impact We led an interactive workshop for the public on ageing and lifestyle.

Public awareness of science and engaging children in science.
Year(s) Of Engagement Activity 2013
URL http://www.britishscienceassociation.org/british-science-festival/newcastle-2013
 
Description NIHR Ageing Biomedical Research Centre lectures 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Health professionals
Results and Impact One of 6 keynote lectures on ageing to a nationally representative group.

Links with other groups and awareness of ageing.
Year(s) Of Engagement Activity 2012,2013
 
Description Regional primary care lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Health professionals
Results and Impact 90 primary care team members attended to listen to my lecture of physical activity and diabetes.

Broader comments and feedback about why and how physical activity may be used in primary care.
Year(s) Of Engagement Activity 2013
 
Description Science on a plate 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Type Of Presentation Workshop Facilitator
Geographic Reach Local
Primary Audience Schools
Results and Impact Schools open day of lectures and interactive tasks.

Links with schools and motivating the next generation of scientists!
Year(s) Of Engagement Activity 2013
 
Description mHealth Lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Health professionals
Results and Impact I gave a keynote lecture on mHealth solutions and data from our recent mHealth tour

Connections with policy makers and healthcare providers.
Year(s) Of Engagement Activity 2013
URL http://www.idf.org/worlddiabetescongress