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University of Nottingham

The University of Nottingham is a research-intensive institution of higher education with over 42,000 students, and campuses in Nottingham, China and Malaysia. Many academics work closely with health and social care providers, and our engagement with the local community in Nottingham is strong. Much of our research is commissioned by national research councils and medical charities, and there are at least 40 academics currently working on topics relevant to dementia; as a university we therefore have a major contribution to make in relation to Action Point 7 (research).

6 January 2019
East Midlands
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Local Alliances:
Nottinghamshire Dementia Action Alliance

1. Action Plan

1. The National Dementia Declaration lists seven outcomes that the DAA are seeking to achieve for people with dementia and their carers. How would you describe your organisation’s role in delivering better outcomes for people with dementia and their carers?

The University of Nottingham is a research-intensive institution of higher education with over 42,000 students and campuses in Nottingham, China and Malaysia. Many academics work closely with health and social care providers, and our engagement with the local community in Nottingham is celebrated in the annual Mayfest. 

Much of our research is commissioned by national research councils and medical charities, and there are at least 40 academics currently working on topics relevant to dementia; as a university we therefore have a major contribution to make in relation to Action Point 7 (research).

In addition, it is important to point out that our commitment goes beyond the delivery of research outputs to their dissemination, implementation in routine practice and promotion amongst potential beneficiaries. There is a strong tradition of collaborative working between the NHS, the voluntary and social care sectors and researchers in Nottingham, and this puts us in an advantageous position to respond to needs for research and service development in relation to dementia.

Dissemination also includes teaching of course: our teaching is informed by research, and several thousand students each year obtain degrees in Medicine, Nursing, Social Work or another health-related profession from the University of Nottingham.

Our over-riding aim during the life of the Action Plan is awareness-raising at all levels in the University of Nottingham. We have identified three objectives that will help us to fulfil our potential as members of the Dementia Action Alliance and create a platform for making lasting improvements in the lives of people with dementia:

1. Ensure that dementia features appropriately in the wider agenda of the university - in education, research, staff support and activities of the members of the university.

2. Develop opportunities for volunteering in clinical settings to engage students and enable them to support people with cognitive impairment who are in hospital.

3. Building on the excellent dementia teaching and research, we will (i) increase our capacity to do research, (ii) enhance the relevance of this research to users and carers, and (iii) promote high-quality dementia training and education within and beyond the University of Nottingham.

2. What are the challenges to delivering these outcomes from the perspective of your organisation?

The large scale of the organisation and the diversity of its members.

2. Actions

  • Position dementia in new applied research initiatives

    At the University of Nottingham there is diverse research relating to dementia, from the basic sciences such as biogenetics,through psychology perspectives on dementia and driving, to applied clinical studies of improvements in care, enquiries into the needs of carers, the use of the arts to engage people with dementia and theatre to disseminate research findings. The University of Nottingham DAA is a forum where researchers from different fields can meet to share ideas and learn from each other, developing new research initiatives and cross-disciplinary perspectives.


    2015 - Second Quarter Update

    A number of relevant research projects have recently commenced at the university. For example, Professor Martin Orrell, the new director of the Insititute of Mental Health at the University has brought with him two projects. One is called Promoting Independence in Dementia (PRIDE) and aims to identify how social and lifestyle changes may help to reduce the risk of developing dementia and disability. Researchers will develop and evaluate an effective social intervention (eg. physical activity, use of computers) to support independence and quality of life for people with early stage dementia and their carers. Another is called AQUEDUCT (Achieving quality and effectiveness in dementia using crisis teams) will develop a resource kit for dementia crisis trials and perform an RCT to incestigate if the resource kit has better outcomes in terms of hospital admissions, quality of life and costs. For more details of research, please see the Dementia Centre website: http://www.nottingham.ac.uk/dementia

    2014 - Third Quarter Update

    Since the last update one year ago we have embarked on several new projects:

    MindTech Health Technology Co-operative aims to use technological innovation to improve the early detection, assessment, and management of  mental health problems.  MindTec is led by Professor Chris Hollis. The MindTec dementia group, led by Professor Tom Dening, wishes to promote technologies that support independence and maintenance of normal activities in people with dementia, particularly activities outside the home.  Technologies should be designed to need the specific user needs of people with dementia and their carers.


    Optimal, a study of the interface between the NHS and residential or nursing homes: what works best for frail older people in this situation? Several homes in Nottingham are taking part.  Led by Professor Claire Goodman at the University of Hertfordshire, Optimal's researcher in Notitngham is Dr. Maria Zubair, supported by Adam Gordon, Tom Dening, John Gladman and Justine Schneider.


    Imagine, a study of digital arts in residential homes. led by City Arts, and funded by the Baring Foundation and Arts Council England, Imagine is introducing high quality arts activities to care home residents, many of whom have dementia.  A team at the university of Nottingham is helping to evaluate this study. Bethany Jones a Psychology PhD candidate is collecting data from homes, advised and supported by Tom Dening, Victoria Tischler and Justine Schneider.


    CHAT, a study that looks at the training of healthcare assistants from the perspective of relationship-building, is now more than six months into its programme of work.  CHAT is led by Professor Tony Arthur at UEA.  Dr. Marcus Barker is the lead researcher at Nottingham, supported by Professor Healther Wharrad.




    2013 - Fourth Quarter Update

    In progress

    2013 - Third Quarter Update

    Recent proposals submitted will if funded conduct a review of knowledge about effective interventions for incontinence in care homes, and explore the involvement of family carers when people with complex needs,including dementia, are admitted to hospital.

  • Increase dementia related research projects

    Support PhD and Master's-levels students to undertake research in this field.


    2017 - First Quarter Update

    Many dementia related research projects continue to be initiated and developed at the university.  Shown below are examples of two of these.

    Developing a fun and stimulating application for people with dementia and their carers, by Harleen Rai

    Harleen Rai is a PhD student who has attended a few of our PPI meetings. She would like a couple of PPI members to help her with her studies over the next few years:

    "For my research I will be investigating whether a web application which can be used on computers and touch screen devices such iPads or smartphones could be used to stimulate memories, conversation, etc for people with dementia. This web application will be designed for and used by people with dementia and their carers.

    The therapy, which we will use on the computer/iPad/smartphone, is ‘Cognitive Stimulation Therapy’. This is an intervention developed by Martin Orrell, the director of IMH, and others over the last decade. We are now hoping to develop a web application and to do a feasibility test.

    I would like a couple of people to help give insights into the design of the web application, in the first phase and then testing (in a year’s time). It might involve 4-6 meetings a year and the work might include reading a few documents, having a go at some apps, and giving your thoughts and feedback. If you are interested and would like to have some more information, do not hesitate to contact me"


    We need you!

    Making a research proposal and planning how to run the project, by Mohan Rathnaiah

    "I am applying to Alzheimer's Society in March for a Phd fellowship. We are proposing to study the mechanism of benefit of exercise in memory improvement in elderly people with mild memory problems. We are planning to do MRI scans to measure for natural anti-oxidant in the brain. I am very keen to get the views of members of the PPI group about the development of our research proposal about measuring the anti-oxidant levels in the brain, before and after exercise therapy. If my application to Alzheimer society is successful, then I would be very keen for the active involvement of PPI group in the implementation of the project." mszmbr1@nottingham.ac.uk

    2016 - Third Quarter Update

    Several new doctoral students have been recruited during the last quarter.  This is a reflection of the increasing number of dementia related projects located within the university.  One such project is the TANDEM programme which held an international conference this year on the Jubilee Campus.  Further details of this conference are shown below:

    TAnDem Arts and Dementia Conference: Research into Practice. Held in Nottingham on Wednesday September 21st 2016

    Through a stimulating mix of keynote speaker presentations, discussion, exhibited artwork and practical demonstration the conference explored some of the key issues affecting those who practice arts and dementia activity, those who research it and those who experience it. How should we be looking to evaluate the work? What is it like to research, or be researched? What drives the funding and commissioning of research and arts practice? 

    Speakers included:

    Professor Paul Camic, Canterbury Christchurch University

    Philip Cave, Arts Council England

    Dr Richard Coaten, Dance Movement Psychotherapist

    Professor Norma Daykin, University of Winchester

    Larry Gardiner, Leading Together Programme

    Gary Glazner, Alzheimer’s Poetry Project

    Matt Laurie, Understanding Arts

    Nicola Melody, NIHR

    James Pickett, Alzheimer’s Society

    Clive Parkinson, Manchester School of Art

    Sharon Scaniglia, Nottingham City Council

    Dr Victoria Tischler, University of Nottingham

    2015 - Third Quarter Update

    Following the success of the university in obtaining Alzheimers Society funding to set up a doctoral training centre focussing on the arts and dementia,  in partnership with the University of Worcester, a number of doctal students have now been recruited. The formal launch of the centre will be taking place on Jubilee Campus on 11th November, 2015.

    ‘The Arts and Dementia’ (TAnDEM) doctoral training centre, split 50-50 between University of Nottingham and University of Worcester, will support six new PhD students to investigate the impact of creative arts activities on people living with dementia in care homes and the community.

    The doctoral training centre is one of eight new centres across the UK that will explore different areas of dementia research. Collectively they will support 55 new PhD students and clinical research fellows over three years, giving a huge boost to the numbers of researchers working in dementia.

    In addition to generating knowledge about which creative arts bring most benefits for people with dementia, TAnDEM will develop new research methods and tools that will be useful to study other kinds of dementia interventions such as brain training or exercise groups.

    There are 850,000 people living with dementia in the UK, including about 14,000 in Nottinghamshire and 10,000 in Worcestershire. Including the Nottingham-Worcester centre, four of the new research centres will focus on dementia care and services research while the other four will focus on biomedical research to increase understanding of the causes of dementia and accelerate progress towards better treatments and ultimately a cure.

    2015 - First Quarter Update

    February 5th 2015 saw the launch of TAnDem, the new doctoral training centre for the arts and dementia. This is a joint initiative between the Centre for Dementia at the University of Nottingham and the Worcester University Association for Dementia Studies. TAnDem will train a new generation of researchers to study the impact of the arts on people with dementia and their carers. PhD candidates who join the DTC will benefit from the resources and expertise at both universities. The Alzheimer's Society has funded four PhD studentships TAnDem with a contribution of £350,000 (2015-2018) and the universities have contributed a further two studentships.

    2014 - First Quarter Update

    Dementia knowledge and skills in students at the University of Nottingham were given a boost by the introduction of a dementia research module within the Master's in Mental Health in the Devision of Psychiatry, led by Professor Tom Dening and with teaching from several colleagues in the field.  The module was taught in the second semester (January-March), 2014.

    2013 - Third Quarter Update

    In progress

  • Promote idea.nottingham.ac.uk as a platform for resources and research findings.

    Anyone wishing to advertise resources, news or events on the IDEA website should contact connect@pixelshrink.com

    The IDEA website (idea.nottingham.ac.uk) has had more than 50,000 visitors since its launch in summer, 2013.  IDEA is a free resource designed to be useful to anyone who is caring for a person with dementia, in any capacity.  It brings together quality-approved learning resources, many of them on video.



    2017 - Second Quarter Update

    The IDEA website continues to flourish and includes relevant news, resources and a blog: https://idea.nottingham.ac.uk/

    2016 - First Quarter Update

    The dementia day today blog which is linked to the IDEA website has attracted many blogs since its official launch last November. Please see the 'social media' action plan for further details.

    Along with the IDEA website and linked dementia day to day blog, as part of the dementia friendly university campaign, a link has been created via the IDEA website through which people can register an interest in becoming a 'dementa friend',join dementia research and receive information about voluneering at the university.  As from the end of March,  176 respondents had become dementia friends, 72 had expressed a willingness to join dementia research and 56 registered their interest in volunteering. Shown below is an example of an email footer used to encourage this involvement.

    Becoming a more dementia-friendly university.  Take five minutes to help at


    2015 - Fourth Quarter Update

    The IDEA website (idea.nottingham.ac.uk) has had more than 50,000 visitors since its launch in summer, 2013.  IDEA is a free resource designed to be useful to anyone who is caring for a person with dementia, in any capacity.  It brings together quality-approved learning resources, many of them on video.  Anyone wishing to advertise resources, news or events on the IDEA website should contact connect@pixelshrink.com

    2015 - Third Quarter Update

    A blog entitled 'Dementia Day to Day' which is linked to the IDEA website is set to be officially launched in November, 2015.  The blog will welcome contributions and reflections on any aspect of dementia from people throughout the community. 

    2015 - Second Quarter Update

    The Centre for Dementia, in collaboration with the School of English’s assistant professor of sociolinguistics, Kevin Harvey, and using IDEA as a platform, plan to re-launch the ‘Fishbowl’ blogging concept as ‘Dementia Day-to-Day’. Fishbowl was designed as an opportunity for academics to talk about what they do, to a non-academic audience: trying to get at views of dementia research (and researchers) from the perspective of academics and also carers, i.e. what is academic interaction with the subject of dementia. Previous Fishbowl blogs focussed on both professional and also some of the personal aspects of those involved, giving insights into the people behind the work. The Centre for Dementia is also involved with a number of projects and initiatives (including seminars and forums for consultation) that generate material that might benefit from the opportunity to create such online debates.

    2014 - Third Quarter Update

    IDEA offers free courses, information and a search facility so that its resources can be quickly linked to learning needs of a wide range of users.  It also permits users to follow self-directed learning about dementia for which a certificate is issued on successful completion.

    2014 - Second Quarter Update

    Free courses available at idea.nottingham.ac.uk include:

    The Basics about Dementia

    Putting the Person First: Seeing the Person Not the Dementia

    Improving communication

    Dementia Care


    There are also courses designed for medical students by Adrian Blundell:

    Dementia 1: epidemiology, aetiology and classification

    Dementia 2: pathophysiology and diagnostic criteria

    Dementia 3: Clinical assessment

    Dementia 3: Management

    2013 - Second Quarter Update

    We encourage DAA members to visit the IDEA site and let us know if there are any ways that it can be improved to meet their needs.  This informaiton and the user statistics will also help us to plan and develop the MOOC.

  • Disseminate findings from existing dementia research in suitable formats

    Disseminate findings from existing dementia research in suitable formats – briefings, presentations, videos etc.


    2017 - Second Quarter Update

    Following the success of the first TAnDem Arts and Dementia conference we are delighted to announce that on 21st September 2017, the Universities of Nottingham and Worcerster will be hosting the second in our series of conferences.

    Confirmed Keynote speakers:

    International practitioners and evaluators of ‘Theater Veder’ (Netherlands)

    Theater Veder, a communication and performance tool developed by professional actors in the Netherlands for use in nursing homes for people with dementia.

    Geoff Wong (University of Oxford)

    GP & internationally recognised expert in realist evaluation of complex health and social care interventions.

    Artist and practitioner lead workshops from: The Imagine Arts programme, Created Out of Mind at the WellcomeHub, Dance practitioner Diane Amans.

    Booking will open April 2017.

    To register interest: tandemconference@worc.ac.uk

    Follow us on Twitter @TAnDem_DTC

    2017 - First Quarter Update

    The Dementia Centre at the University continues to run monthly seminars on dementia related isses.  They normally take place from 11.30am to 12.30pm at the Institute of Mental Health on the second Thursday of each month.  To register your attendance at seminars or for further information please email:- jill.charlton@nottingham.ac.uk.  Shown below are the next two seminars taking place:

    Rehabilitation for Outdoor Activities and Mobility in Care Homes: the ROAM study

    Amanda King presents on 13th April 2017, 11:30am-12:30pm

    Care home residents should be supported to participate in meaningful activities in their preferred places, including outdoor spaces. Although outdoor engagement in greenspace is believed to be beneficial, the majority of residents stay indoors. Using a realist approach, this study is investigating what helps and gets in the way of residents’ garden use. Data has been collected in 3 care homes in the East Midlands and analysis is currently in progress. Amanda will present an overview of the study and share some preliminary findings.

    Music in Care

    Farai Pfende, John Osbourne and JoCo Learning & Development present on 11th May 2017, 11:30am-12:30pm

    This Seminar is an introduction to the UK based "Music in Care" programme which promotes the use of personalized music in therapeutic ways, in a range of care settings. This seminar will focus specifically on the "Soundtrack to My Life" the first program that was developed which explains the value of personalized music in dementia care highlighting important research evidence. Farai and John will discuss the outcomes the "Soundtrack to My Life" book enables people living with dementia to achieve. They will also talk about the accompanying training, designed to develop knowledge, competence and confidence of frontline staff and family carers in musical practice. Using a Care Home case study, they will share the positive outcomes the training program is having on meeting the challenges of living with dementia using this person centred approach to music.

    Other research dissemination acitivites

    Other research dissemination acitivites have also taken place.  For example, in March, 2017, Dr Teppo Sarkamo gave a talk on the benefits of music for the ageing brain at the Institute of Mental Health.  Also in March, the David Ross Sports Village on main campus hosted table tennis therapy sessions for local people with dementia and their carers with the use of specially adapted tables.

    2016 - Fourth Quarter Update

    Dementia related research continues to be presented in a variety of formats which is easily accessible by diverse audiences.  For example, shown below is a summary of research from the Dementia Centre website at http://www.nottingham.ac.uk/research/groups/dementia/index.aspx:

    Research issue

    There is public concern about the increasing numbers of very old people in the UK, indeed across the world, and therefore the increasing numbers of people with dementia.

    There is also concern that many cases of dementia go undetected and therefore people do not have access to the right help at the appropriate times.

    This has led to calls for screening the older population for early signs of dementia.

    Examining the evidence for screening

    While concern is understandable, screening a population means testing people who do not yet have any symptoms.

    Effective screening would be able to diagnose the condition very accurately and there should be an intervention available for cases who are identified that will lower their risk of serious harm later on (e.g. cervical or breast screening).

    However, this is not the case for dementia, since diagnosis in the very early stages is extremely difficult and there is no intervention that is proven to reduce harm if offered at this stage. There is instead a risk of false positive cases, that is, people diagnosed with dementia who do not actually have the condition.

    We have been working as part of collaboration funded by the Alzheimer’s Society looking systematically at evidence around screening for dementia, including public attitudes and the economics of screening in this way.

    The issue has also been an area of public debate as there are conflicting interests involved. It is therefore all the more important to examine the evidence and look for where more research is needed.

      What we are doing about ...

    Making a centre for dementia research in Nottingham

    Our biggest plan at present is to bring together all the different strands of research around dementia and older people in Nottingham, so that our group and other researchers can work effectively with other partners (health and social care providers, voluntary organisations) and the public, so that people know about our work and are able to help us set the agenda too


    Helping people to make decisions

    Our DECIDE project (with the School of Health Sciences) is looking at how relatives and paid carers approach issues of mental capacity and decision making in relation to everyday decisions made by frail older people.

    Do people in real life adhere to the principles of the Mental Capacity Act?How do they decide if a frail older person is capable of making a competent choice?

    We aim to use our findings for a larger study aimed at improving practice in this area.


    Dementia and employment

    There are two streams to our interest in employment.

    First, the recent abolition of the default retirement age in the UK and the gradual raising of the State Pension age will result in an increasing proportion of workers over the age of 50 and a new generation of workers aged over 65. This will inevitably mean that more people will develop dementia while they are still in employment. We plan a systematic enquiry into this challenge.

    Second, as a result of the ageing population, greater numbers of older people will need healthcare. For example, in the UK, two-thirds of patients in general hospitals are older than 70, of whom half have dementia or delirium or both. Some of our work involves exploring the preparation of the workforce that cares for older people with dementia.


    Promoting creative arts to enhance well being and to connect art with people

    We are engaged in Arts and Humanities Research Council (AHRC) funded research to explore the utility of visual arts interventions in enhancing the health and wellbeing of those with dementia.

    Interventions are being developed for delivery in Newcastle, Derbyshire/Nottinghamshire and North Wales in inpatient, community and residential care environments.

    The work aims to benefit individuals with dementia as well as developing dementia friendly communities using the arts.


    Other research areas

    Population based studiesCare homes – health service support to homes; effects of caregiver communication stylesClinical trials in dementiaDementia and employmentTechnology in dementiaHome or domiciliary care

    2016 - Third Quarter Update

    A number of relevant events have taken place in the last quarter including the TanDem Arts and Dementia Conference: Research into Practice held in Nottingham on Wednesday September 21st 2016.  In addition there have been montly dementia centre seminars at the Institute of Mental health which are open to the public as well as monthly PPI meetings.

    2016 - First Quarter Update

    In addition to its ongoing series of monthly seminars featuring internal and external speakers,the Dementia Centre at the Institute of Mental Health has run a number of other research dissemination event in the last quarter.  For example, on 6th April 'Words and Dementia:  Collaboration, Interpretation, Inspiration' examined issues of language and dementia.

    There will also be a Patient and Public involvement event during Dementia Awareness week on 16th May.  See below for further details:

    We would like to invite people affected by dementia (including family and carers) to an event to improve public involvement in research. By public involvement we mean people are consulted about research projects and help to make the work better, more relevant, and have bigger impacts.

    We would also like to invite researchers who would like to engage with patients and the public. The event will help to improve your processes in involving people, and you may be able to recruit people directly on the day.

    Patient and public involvement is by no means straightforward and we plan to tackle some of the challenges and see whether we can turn these into opportunities through working together. Finally, we will discuss how the Centre for Dementia at Institute of Mental Health can provide infrastructure to better support patient and public engagement over the long term.

    We anticipate that the day will be valuable to a wide variety of people, so please put the date in your calendar and if you’d like further information or have any questions please get in touch with Neil Chadborn, Email neil.chadborn@nottingham.ac.uk or Jill Charlton, Email jill.charlton@nottingham.ac.uk

    When - Monday, 16 May 2016 from 10:00 to 16:00 

    Where - Institute of Mental Health ( A floor) - University of Nottingham Innovation Park Triumph Road, Nottingham NG7 2TU, United Kingdom

    2015 - Third Quarter Update

    The Dementia Centre continues to run a seminar programme on the second Thursday of each month in which a range of speakers from within the university and beyond present their dementia related research.  These seminars are open to the public and further details can be found on the Dementia Centre website.

    Regular meetings have also been organised by members of the Dementia Operational Group for people with dementia and their paid and unpaid carers.  These are successful both in terms of research dissemination and in maintaining links with those at the 'front line' and incorporating their views and perspectives into research.

    2015 - Second Quarter Update

    On 3rd June, 2015, a conference will take place at the Institute of Mental health, University of Nottingham, which will focus on building research partnerships.  Its focus will be on the barriers and facilitators of person centred dementia care and it will be aimed at around 80 participants who work with people with dementia in care home and home care settings around the region.

    2015 - First Quarter Update

    Two new podcasts based on PhD research by Miriam Gray will shortly be available on the HELM website: http://www.nottingham.ac.uk/helm/home.aspx These look at how to communicate with people with dementia using direct instructions and better pacing of speaking and listening. They are suitable for self-directed and blended learning and are freely-available.

    2013 - Second Quarter Update

    New member

  • Disseminate the play about dementia carers: 'Inside Out of Mind'

    After 15 public performances in 2013, the play written and directed by Tanya Myers went on tour, from February 19th- March 29th, 2015.  Thanks to funding from Arts Council England, it was revived in Nottingham and toured to Canterbury, Exeter, Warwick, Leicester and Derby in 2015, with up to 6,000 seats earmarked for NHS personnel, particularly direct dementia care workers, whose working lives are the focus of the play.  

    A live recording of the play Inside Out of Mind can be hired for screening to professional audiences.  Details can be found here: www.idea.nottingham.ac.uk/screenings

    The fee includes attendance by the writer Tanya Myers or another member of the creative team to run a post-show discussion.  Thie film is an excellent training resource and has already been used by at least 20 health and social care organisations for this purpose. 

    Being implemented

    2018 - Third Quarter Update

    The live recording of Inside Out of Mind is now available to book online: 


    2015 - Fourth Quarter Update

    The university has been contracted to provide training using a live recording of Inside Out of Mind for care home staff in Notts.  This is planned to take place in Newark and Mansfield, the places that the live performance did not reach easily. This is likely to take place in April, 2016 and possible venues are currently being investigated.

    2015 - Third Quarter Update

    There is now a 90 minute film version of Inside Out of Mind which includes a workbook and is temporarily available for training purposes

    2015 - Second Quarter Update

    The play ‘Inside Out of Mind’, based on research in Nottingham, directed and written by Tanya Myers, toured to six towns across England in February and March, 2015, bringing its total audience to date to over 7,000.  Members of the public and  family carers  as well as health and social care personnel praised it as ‘thought-provoking’, ‘moving’ and ‘true to life’ in its humorous portrayal of life on a dementia ward.  A live recording of the show will be available for cinema distribution and conferences in 2015-16.

    Inside Out of Mind has also been shortlisted for the Best Arts Project in the National Lottery Awards from over 600 projects.

    2015 - First Quarter Update

    Warmly welcomed by care workers who recognise the authenticity of the situations portrayed, the play has generated the following 'take-home messages': Carers and mental health nurses need to be valued more. Care staff are saints! My understanding and empathy has increased. Be patient & gentle. Take time to communicate & listen. Being ‘cared for’ is not easy. People with dementia are individuals with lives & stories to tell. Makes me examine my own practice. Staff have strong emotions too & are affected too.

    2013 - Second Quarter Update

    This was successfully completed with 15 performances between June 15th and 29th at Lakeside Arts Centre, Nottingham.

    Over 2,000 people saw the remarkable play and the response was so enthusiastic that we are planning a revival and tour in 2014.

  • To promote patient and public involvement

    To encourage the involvement of people with dementia and their carers in activities within the Institute of Mental Health and the University more generally.

    Being implemented

    2017 - Second Quarter Update

    As part of Dementia Awareness Week (14th– 20thMay 2017), the Dementia Centre at the Institute of Mental Health has been involved in an Imagination Café being held in the Old Market Square, Nottingham 10.30 – 4.30pm on 15thand 16thMay.

     It is a collaboration between Nottingham Contemporary, The University of West London, Arts and Humanities Research Council: Dementia and Imagination and Dementia, Arts and Wellbeing Network, Alzheimer's Society, Dementia UK, The Institute of Mental Health (Centre for Dementia), Nottingham City Council, and Nourish by Jane Clarke.  It has been attended by local celebrities such as Vicky Mclure and has helped to raise awareness of dementia around the area.

    2017 - First Quarter Update

    Monthly PPI meetings continue to take place at the Institute of Mental Health although the format of these has changed slightly and now finish at 11.30am rather than at 12.30pm.  See below for the latest updates.

    Centre for Dementia Patient and Public Involvement

    Our group for people with dementia and their family members or carers aims to help the research within Centre for Dementia. The group meets monthly to hear news from research projects, and also to learn about the processes of dementia research. Academic researchers also attend, to learn about how to work better with people with dementia. We hope that everyone gets something out of the meetings, including friendship and support that comes with a peer group. Specifically, we will ask your input to shape the way that research money is spent and the research is done. The meetings will also help people with dementia and their carers to link up with the individual research projects where there are more chances to get involved.

    Meetings are on the first Wednesday of the month at the Institute for Mental Health, Triumph Road, Nottingham NG7 2TU. We have coffee and tea from 10.00am, for a 10.30am start. We expect to finish at 11.30am. Please let us know if you can come, so that we can order catering.

    If you have any questions or need support in order to participate, just let us know, and we will try to accommodate you: Neil Chadborn (Neil.Chadborn@nottingham.ac.uk) or Jill Charlton (0115 82 30417). If no one is in the office, please leave a message on Jill’s answerphone.

    PPI Activity in Projects

    Researchers call upon members of the public to comment on all stages of their research to make sure that the questions being asked are relevant and sensitive to people’s needs, and also to capture what issues are important.

    Over the last seven months we have had a large variety of talks. We have aimed to cover different aspects of the process of research. For example :

    Laurie described a completed project where PPI had been involved in developing dementia-friendly GP practices.

    We have had PhD students presenting their projects on arts and reminiscence, including using technology such as iPads or tablets to prompt memories.

    At the other ‘end of the spectrum’ we have had a presentation by Maria of the laboratory investigations of ‘genetic switches’ that may link exercise with prevention of dementia.

    Finally we have had talks by Claudio, Jen and Rebekah about how PPI members can be involved in conducting the research itself as ‘co-researchers’ alongside academic researchers. If you would like further information about any of the presentations, please get in touch.

    Diary Dates

    5th April 2017: Room A08, IMH

    Harleen has introduced her topic in a previous meeting, but she would like to spend more time letting people have a look at the individual Cog-nitive Stimulation Therapy (iCST) manual and discuss what they like or dislike. Then she would also like to hear more views on how this could be converted into a computer programme (app). Harleen will demon-strate these on the big screen.

    Neil Chadborn. Learning about the research process and how Pa-tient and Public Involvement can influence research studies

    3rd May 2017: Room A08, IMH

    Tracy Marr. Neuroimaging tools to better understand how the brain is changing in the early stages of dementia.

    2ndslot – to be decided – please send in suggestions if there are topics you would like covering.

    7th June 2017: Room A06, IMH

    Tony Kelly and Justine Schneider. BOUGH study of home care (domiciliary) and commissioning.

    2ndslot – to be decided – please send in suggestions if there are topics you would like covering.

    5th July 2017: Room B27, IMH

    Both slots to be decided – please send in suggestions if there are topics you would like covering.

    Get in Touch!

    Whether you’re an academic, working in healthcare, or are a member of the public, if you’re interested in hearing more about PPI at the Centre for Dementia please get in touch with Jill Charlton. We can then make sure that you receive this newsletter and updates about ongoing research at the Centre.


    Telephone: 0115 8230417

    The IDEA website offers lots of information about dementia and can be found by following this link on the internet: www.idea.nottingham.ac.uk. It includes free online training courses and the Dementia Day-To-Day blog, which is always on the lookout for more contributions from patients, members of the public, health care workers, and academics.

    Public Face is an online bulletin about PPI. You can submit items for inclusion to katie.swinburn@nottingham.ac.uk, and find previous issues on the internet at www.emahsn.org.uk/public-involvement/public-face-newsletter

    2016 - Fourth Quarter Update

    Montly PPI meetings continue to take place at the Insititute of Mental Health, please see below for the itinerary for next year:


    Please see details of the next PPI meeting. You will learn about current research projects and how people with dementia and their carers can shape the way that research money is spent and the research is done. The meetings will also help people with dementia and their carers to link up with the individual research projects where there are more chances to get involved.

    Each meeting will be held at the Institute for Mental Health, Triumph Road, Nottingham NG7 2TU from 10.30am to 12.30pm. In the new year we are moving to Wednesday mornings. We will provide a buffet lunch at 12:30.

    If you have any questions or need support in order to participate, just let us know, and we will try to accommodate you: Neil Chadborn (0775 489 7024) or Jill Charlton (0115 823 0417). If no one is in the office, please leave a message on Jill’s answerphone.  


    Wednesday 11th January 2017 - Room B27 *please take lift to the first floor*

    Ask                Emily Cousins will hold a focus group discussion as part of her research.

    Innovate      We will hear views on the learning session planned for February.

    Inform          To be confirmed.


    Wednesday, 1st February 2017 – 10.30 – 1.00pm Room A08

    Learning event about ‘peer research’. We will discuss how someone with dementia or carers can partner with a researcher to conduct a research interview or focus group discussion.


    Future dates:

    Wednesday, 1stMarch 2017 – 10.30 – 1.00pm - A08

    Wednesday, 5thApril 2017 – 10.30 – 1.00pm – A08

    Wednesday, 3rd May, 10:30 – 1.00pm – A08

    2016 - Third Quarter Update

    There is a view that it would be helpful for the Centre for Dementia at the university to hold its own regular meeting focused on Patient and Public Involvement.  

    With this goal in mind, a meeting will be held from 10.30 to 12.30 at the Institute of Mental Health on the first Tuesday of the month, starting 6 September 2016, following on with 4 October, 1st November and 6th December. These four meetings will give us a sense of what needs to happen in 2017.

    The meeting to be open to both ‘experts by experience’ and ‘experts by qualification’ i.e. patients/public and staff, so that we will be able to learn together. Each meeting will be co-hosted by a member of staff, working alongside a PPI member.

    The agenda will be formed of a combination of three items:

    Presentations about current work (linked to the Centre for Dementia, of course), followed by discussion, so those present can learn more about what is going on.  

    Advice surgery sessions, where academics test out ideas or seek opinion from people who live with dementia. 

    Learning exchanges, which focus on an innovative aspect of PPI and pool ideas about how to move it forward at the Centre for Dementia.