Living well with dementia

Lead Research Organisation: University of Exeter
Department Name: Psychology

Abstract

Living well with dementia, whether as a person with dementia (PwD) or primary (usually family) carer (PC), can be understood as maximising life satisfaction, reaching one's potential for well-being, and experiencing the best possible quality of life (QoL). Enabling PwD and PC to live well with dementia is a key UK policy objective, but policy recommendations do not tell us how this can be achieved. This project aims to understand what 'living well' means from the perspective of PwD and PC. It will identify what helps people to live well or makes it difficult to live well in the context of having dementia or caring for a person with dementia. In order to understand what 'living well' means to people with dementia and primary carers, and what influences the possibility of living well, we will find out about the things that affect the way in which people adapt to the effects of the condition and the challenges it presents, and how these things change over time. These include the assets and resources people have available, and the support they get from other people in their network. We will find out about how the way in which people respond to the challenges presented by dementia affects their ability to engage in activities and participate in the community. We will look at how all of these things relate to well-being, satisfaction with life and quality of life for PwD and PC, and how changes in assets and resources affect the possibility of 'living well' with dementia. Over a two-year period we will recruit 1500 people with early-stage dementia from all areas of the UK. We will also include a PC wherever possible, and we expect to include at least 1000 PC. We will make contact with potential participants through the local research networks that link with NHS memory services. We will visit all the participants (PwD and PC) and we will ask them to respond to questions about things that influence their life satisfaction, well-being and quality of life. This will yield numerical data that we will analyse statistically. We will visit all the participants on two more occasions, one year apart, to find out how things develop or change over time and how any changes affect their life satisfaction, well-being and quality of life. A smaller group composed of those whose ability to live well improves or declines over the first year of the study will be interviewed in more depth in years 2 and 3, and we will draw out the important themes in what they tell us and use what they say to enrich the understanding we have gained from the statistical analyses. We will involve an advisory network including PwD, PC, members of the public and representatives of the Alzheimer's Society in running the study to help make sure that it is relevant to PwD and PC and that the best possible use is made of the findings. We will use our findings to create an action plan setting out what can be done by individuals, communities, health and social care practitioners, care providers and policy-makers to improve the likelihood of living well with dementia. We will work with policy-makers to ensure that the information we have gained will influence future policies. We will work with commissioners and providers of health services and social care services, and with practitioners in these areas, using the evidence we have gained to improve the effectiveness of services. We will engage with the general public to try to encourage a more constructive attitude towards dementia and make local communities more aware and dementia friendly. The study will be the first large-scale study of its kind and will help to develop the skills of researchers in the dementia field and stimulate new developments. It will provide a unique resource and focus for social science research in the UK and internationally.

Planned Impact

We expect this study to have a major impact on the lives and experiences of people with dementia (PwD) and primary carers (PC) in the UK and internationally. Improved outcomes for PwD and PC will yield significant social and economic benefits for society in general and including economic benefits for the NHS and for social care service providers in particular. The findings will provide an understanding of the factors that support or constrain the ability of PwD and PC to live well with dementia, and the possibilities for change and improvement. The resulting comprehensive picture of the current UK situation in relation to policy aspirations will offer a firm foundation for policy and practice development in relation to living with dementia. We will aim to have a significant impact in three key areas. First, academically the study will provide robust and high quality research evidence on what factors affect the capacity of PwD and PC to live well with dementia and will identify those factors that are amenable to effective intervention in the short, medium and long term. The study will have a significant impact on dementia research nationally and internationally by advancing methods in the area, contributing a unique data resource for social science researchers and providing a focal point for increasing the capacity of multidisciplinary research to contribute to this important research area. Second, we will work closely with practitioners in health and social care so that the study makes a significant contribution to translating into effective health and social care practice the improved knowledge and understanding of ways of addressing the capacity of PwD and PC to live well arising from the findings. Third, the research will provide insights and evidence to support the development of dementia-friendly communities. By focusing on the lived experience of dementia and the daily lives, social relations and physical and social environments of PwD and PC we will be able to examine how everyday social interactions in a range of areas (shopping, travelling, leisure, internet, volunteering, financial, etc) facilitate or present barriers to living well, and to identify ways in which public perceptions of dementia can be improved. In so doing we will identify areas where changes (even at low levels) may improve people's daily lives and disseminate this material to groups working to develop dementia-friendly communities and key public, private and third sector organisations. Throughout the study we will utilise a range of impact pathways involving engagement with the general public, practitioners, service providers and policy-makers. These will include creating a prominent internet and social media presence, developing printed and online materials, contributing to training courses and programmes, conducting regional workshops linked to local research networks, presenting at events and conferences, and contributing articles to practitioner and academic journals. A consensus meeting will be held with the aim of synthesising the research findings to form an action plan identifying what can be done by individuals, practitioners, service providers and policy-makers to enhance the potential for living well with dementia. This will be presented at an end-of-study conference we will organise for practitioners, providers and organisations working in the field, in order to stimulate collaborative working with key stakeholders to address the aims of the action plan. Through these activities we aim to have a significant impact by influencing public perceptions of dementia, enhancing the work of practitioners in health and social care, encouraging the development of new approaches and interventions, contributing to the development of cost-effective service provision, and improving policy.

Publications

10 25 50

Related Projects

Project Reference Relationship Related To Start End Award Value
ES/L001853/1 01/01/2014 28/02/2015 £4,148,520
ES/L001853/2 Transfer ES/L001853/1 01/03/2015 31/12/2019 £3,565,586
 
Description We developed an effective means of involving people with dementia and carers in the research programme by creating and facilitating the ALWAYs (Action on Living Well: Asking You) group. This ensured meaningful participation in all aspects of the programme, from developing questionnaires and interview schedules to interpreting and disseminating findings.

We demonstrated the central role of psychological factors in relation to 'living well' with dementia for both people with dementia and carers. While other domains such as physical health and social resources are important, when modelled together using data from a large cohort, psychological factors dominate. 'Living well' was defined as a composite of quality of life, satisfaction with life and well-being. Our initial systematic review indicated that existing evidence did not provide clear recommendations: .sufficient evidence was available only for quality of life, and showed only that many factors have small effects on quality of life. The model developed from IDEAL data, in contrast, provides clear evidence-based indications about where to target efforts aimed at promoting ability to 'live well'.

We presented novel evidence on reciprocal influences on well-being within dementia caregiving dyads. Having modelled 'living well' separately for people with dementia and carers, we examined the way in which each member of the dementia caregiving dyad influences the ability of the other to 'live well'. Few studies have considered even the influence of one member on outcomes for the other, and we are among the first to directly address reciprocal influences. We adapted the actor-partner independence model and, uniquely, were able to include in the model those people with dementia who had no carer participating in the study. We presented evidence that depression and loneliness, when occurring in either member of the dyad, influenced outcomes for both members. In contrast, perceptions of relationship quality influenced outcomes only for the individual holding those perceptions. This has clear implications for refining guidance to practitioners to enable them to target interventions so as to achieve optimum benefit.

We addressed issues of health inequality through further fine-grained analyses of cohort data. We demonstrated a clear relationship between area-level deprivation indices and individual scores on measures of 'living well', with people in less-deprived areas scoring better. This emphasises the need to consider social and environmental influences on 'living well' and how people living with dementia in more deprived areas might be better supported. Similarly we demonstrated differences in ability to 'live well' according to the specific type of dementia, showing that people diagnosed with Parkinsonian dementias and their carers scored on average more poorly on indices of 'living well' than those with other dementia diagnoses. This is thought to be because of the additional physical disabilities they face and in many cases the long period of living with disability prior to the onset of cognitive decline. Again, this evidence supports targeted resourcing to those in greatest need. It also led us to identify new research questions about 'seldom heard' groups, and we obtained further funding to explore these questions.
Exploitation Route Developing a comprehensive model of factors associated with living well with dementia provides a strong evidence-base for a coherent approach to conceptualising the needs of people affected by dementia and actions that can be taken to address these at societal, community, family and individual levels. Our findings are relevant for policy and practice.

For example, our models have been a key source of evidence used in developing the theory of change and measurement framework for the Alzheimer's Society strategy. This is now being applied to evaluate the Society's new Dementia Connect service model for people with dementia. Our findings underpin the Society's new policy position report on carers, and were included in the recent APPG report on dementia and disability. Findings on levels of physical activity in people with dementia and carers are being used to influence businesses and organisations to take action to better support people affected by dementia.

Our linked arts-based programme has led to the 'Unfurlings' movement (www.theunfurlings.org,uk) where groups of people with dementia are producing banners to campaign for change, for example more accessible public transport or more responsive services. The banners are now being shown across England in a touring exhibition to raise awareness.
Sectors Communities and Social Services/Policy,Healthcare

URL http://www.idealproject.org.uk/
 
Description Alzheimer's Society task force on dementia research: prevention, diagnosis, intervention and care
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
 
Description IDEAL Centre for Policy and Ageing
Geographic Reach National 
Policy Influence Type Citation in other policy documents
URL https://mailchi.mp/ageing-better/research-and-policy-february?e=6899297122
 
Description NICE Quality Standards Advisory Committee for development of dementia quality standards 2018
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
 
Description Presentation by Ian Rees Jones - IDEAL findings at the Cross Party Group on Medical Research, Senedd, Wales, March 13th 2019
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Alzheimer's Society Centre of Excellence
Amount £1,999,704 (GBP)
Funding ID AS-PR2-16-001 
Organisation Alzheimer's Society 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2018 
End 12/2022
 
Description ESRC Festival of Social Science 2017
Amount £940 (GBP)
Funding ID ES/L001853/2 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 11/2017 
End 11/2017
 
Description ESRC/NIHR-IDEAL project-proposal for additional funding January 2018
Amount £10,000 (GBP)
Funding ID ES/L001853/2 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 01/2018 
End 03/2018
 
Description IDEAL ESRC FOSS 2018
Amount £620 (GBP)
Funding ID ES/L001853/2 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 11/2018 
End 11/2018
 
Description IDEAL International Collaboration for ESRC Investments June 2018
Amount £26,800 (GBP)
Funding ID ES/L001853/2 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 10/2018 
End 03/2019
 
Description Knowledge Exchange (KE) projects for ESRC investments
Amount £114,018 (GBP)
Funding ID ES/L001853/1 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 07/2015 
End 12/2018
 
Description Understanding and improving support to help people with dementia and their carers prepare for advanced illness and end of life
Amount £241,238 (GBP)
Funding ID AS-PG-17b-015 
Organisation Alzheimer's Society 
Sector Charity/Non Profit
Country United Kingdom
Start 09/2018 
End 08/2023
 
Description Workshop with Springboard group at Gallery Oldham 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshop with Springboard group at Gallery Oldham
Year(s) Of Engagement Activity 2019
 
Description 'Researching the 'obvious'' Altzhimers Society magazine article, October 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Alzheimer's Society magazine ('Dementia together') article, featuring Nicola Hart, p. 15
Year(s) Of Engagement Activity 2019
 
Description A Life More Ordinary - Chapbook Launch Exeter 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact The event was an opportunity to thank all those living with dementia or living with someone with dementia involved. Beyond this, the event gained publicity that went out on multiple regional TV and radio stations, sharing the aims of both the 'A Life More Ordinary' and IDEAL projects:

Featured on ITV West Country news: linked article still available online
http://www.itv.com/news/westcountry/2017-11-01/exeter-project-creates-book-dispelling-misconceptions-about-dementia/
Year(s) Of Engagement Activity 2017
URL http://www.exeter.ac.uk/news/featurednews/title_618779_en.html
 
Description ALMO Kent Workshop 1 (Canterbury) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Study participants or study members
Results and Impact First workshop in Kent took place in Canterbury with IDEAL participants and members of the Forget Me Nots group. The artists, Ian Beesley, Ian McMillan and Tony Husband gave an introduction to the 'A Life More Ordinary' project and previous work by the artists and other groups was displayed. Participants were asked to help Ian McMillan create an 'epic' poem while Tony Husband illustrated the poem in the background. Next everyone wrote a line based on the theme of 'routine' at the top of a piece of paper, folded it over and passed it on to the next person to write their line. After a tea break Ian McMillan read out the poems and Tony Husband illustrated some of the lines.
Ian Beesley took photographs of participants during the workshop and of them holding a photograph they had brought with them, which meant something to them.
Year(s) Of Engagement Activity 2017
 
Description ALMO Kent Workshop 2 (Maidstone) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Study participants or study members
Results and Impact The second Kent workshop took place in Maidstone with members of Memorybilia. The artists, Ian Beesley, Ian McMillan and Tony Husband gave an introduction to the 'A Life More Ordinary' project and previous work by the artists and other groups was displayed.
Participants co- created some poems with Ian McMillan while Tony Husband illustrated the poems in the background. Ian Beesley took photographs of participants during the workshop and of them holding a photograph they had brought with them, which meant something to them.
Year(s) Of Engagement Activity 2017
 
Description ALMO Oldham workshops (eight dates) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Study participants or study members
Results and Impact A series of eight workshops took place at Gallery Oldham throughout 2017 with a local group of people with dementia, their partners and volunteers. The workshops were led by artists, Ian Beesley, Ian McMillan and Tony Husband as part of the 'A Life More Ordinary' project.
They have been using the education suite at Gallery Oldham to run the workshops and some of the objects at the gallery have been a source for discussion. For example, a large stuffed owl inspired a discussion around the question 'if memory was an animal what would it look like?' Key themes from the workshops have been around memory and time.
In January 2018, Gallery Oldham announced that they would fund the workshops for another year. All images and poems produced would be deposited into the archive of images being created as part of the 'A Life More Ordinary' project. The group will also invite new members to join.
Year(s) Of Engagement Activity 2017
 
Description ALMO Right to Get Out and About 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Study participants or study members
Results and Impact Ian Beesley (photographer) and Tony Husband (cartoonist) took part in event run as part of the 'Right to Get Out and About' project organised by Innovations in Dementia. It involves three Dementia Engagement & Empowerment Project (DEEP) groups: DEEP Vibes Scarborough, York Minds and Voices and Face it Together (FIT) in Bradford.
Ian Beesley will produce black and white photos of the day and Tony Husband will produce a set of postcards about our travel stories in cartoon style in the old seaside postcard style.
Wendy Mitchell, who is a member of the Mind & Voices group in York, wrote a piece on her blog about this event.
A further event is planned in February 2018.
Year(s) Of Engagement Activity 2017
URL https://whichmeamitoday.wordpress.com/2017/09/04/minds-and-voices-head-to-the-seaside/
 
Description ALWAYS (PPI) and DEAR group meeting, July 2019 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact ALWAYs patient and public involvement group meets DEAR patient and public involvement group to feedback on on coproduction work by DEAR
Year(s) Of Engagement Activity 2019
 
Description Alzheimer's Europe 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster on 'Adjustment and representations in dementia' presented at the Alzheimer's Europe conference.
Year(s) Of Engagement Activity 2017
URL http://www.alzheimer-europe.org/Conferences/Berlin-2017/Detailed-programme-and-abstracts/PO1-Living-...
 
Description Alzheimer's Society Blog 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact The Alzheimer's Society blog was aimed at publicizing the study to a lay audience of people with dementia and carers. The blog also announced the launch of the chapbooks that are being produced as part of the study.
Year(s) Of Engagement Activity 2017
URL https://blog.alzheimers.org.uk/research/ideal-project-chapbooks/
 
Description Article Findings from IDEAL, Innovation Magazine, 01 October 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Article in the 'Innovation' magazine, a the Research and Development newsletter published by Leeds and York Partnership NHS Foundation Trust. Magazine available in print and online. Newsletter mostly distributed to internal Trust staff and departments, external Trusts and Universities.
Year(s) Of Engagement Activity 2019
URL https://www.leedsandyorkpft.nhs.uk/research/publications/
 
Description Article about A Life More Ordinary (ALMO) banners and where they will be displayed around the country, University of Exeter website, 21 Feburary 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Website article with quotes from an interview with L. Clare promoting the work of the artist Iam Beesley and the DEEP dementia groups and where the banners and artwork will be exhibited
Year(s) Of Engagement Activity 2019
URL http://medicine.exeter.ac.uk/news/articles/artcreatedbypeoplelivingw.html
 
Description Article in New York Times about: 'Dementia May Never Improve, but Many Patients Still Can Learn', quoting IDEAL findings, 04 Janurary 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Article dispelling some negitave myths about dementia to the general public
Year(s) Of Engagement Activity 2019
 
Description Article in Wales Institute of Social and Economic Research, Data and methods (WISERD) 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact 'What helps people living with mild-to- moderate dementia to 'live well'? Findings from the IDEAL study' - article in WISERD based on presentation by Ian Rees Jones in March
Year(s) Of Engagement Activity 2019
URL https://wiserd.ac.uk/publications/caregivers-beliefs-about-dementia-findings-ideal-study
 
Description BSG 2017 Positive Aspects of Caregiving 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation on "Positive aspects of dementia caregiving" at the British Society of Gerontology 2017 conference held in Swansea. This was part of a symposium on "Positive experiences of living with dementia and caring for someone with dementia"
Year(s) Of Engagement Activity 2017
URL http://www.swansea.ac.uk/media/BS_Gerontology_Abstract_Book.pdf
 
Description BSG 2017 Symposium Social & Supportive Relationships 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Rippon I., Nelis S.M., Wu Y-T. & Victor C. on behalf of the IDEAL Study Team (6 July 2017) How lonely and isolated are older people with dementia and their carers? Presentation at the 46th Annual British Society of Gerontology Conference, Swansea. One of four presentations given as part of Prof Christina Victor's Reimaging Loneliness symposium.
Year(s) Of Engagement Activity 2017
URL http://www.swansea.ac.uk/media/BS_Gerontology_Abstract_Book.pdf
 
Description BSG 2017 conference: Presentation on social class, ageing and identity in dementia 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation of PhD work and emergent findings at British Society of Gerontology annual conference in Swansea.
Year(s) Of Engagement Activity 2017
URL http://www.swansea.ac.uk/media/BS_Gerontology_Abstract_Book.pdf
 
Description Bangor Emerging Researchers in Aging (ERA) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Title of activity
'Living well with dementia: Implementing what we know' One day workshop/seminar
What was the engagement activity
One day seminar/workshop event targeted at early career researchers in dementia and key stakeholders including people with dementia, carers, practitioners and care providers, community groups and third sector organisations. The purpose was to foster collaboration and networks between those starting out in research and users of research with the aim of improving research impact.
Geographical reach (local, regional, etc.) The event happened in Bangor - the delegates (particularly the stakeholder groups were from North Wales) but the research delegates were more spread including people from the Bradford Dementia group and Brunel University.
Primary audience: The audience was a 50/50 split between early career researchers and stakeholders/users of research (including people with dementia, carers, practitioners (OTs, memory clinic staff, audiology), artists (working on dementia related projects), community groups and third sector representatives (dementia friendly communities for example).

Main purpose of the activity
o Share info -
early career researchers to share their projects with key people who may be affected by their findings
Information sharing across different groups about the research needs people living with or caring for people with dementia have as well as how best to disseminate key findings and help use it to implement change
o Stimulate thinking
Sharing knowledge, experience across the different groups helped to generate ideas about future relationships and partnerships for research
o Improve understanding of other's thinking
Bringing together the different groups - academics, services, people with dementia etc. helped academics better understand the ways people engage with and use research
o Inform decision making
The event was not focussed on key policy change - however, it may have shaped services' decisions regarding the allocation of resources towards engaging with research or pilot projects to help implement a strategy that research has shown to be of benefit.
o Make decisions
The event may help decisions regarding future partnerships and research collaborations

How many people did it reach?: The event was attended by 43 people
Describe the results of the activity: The results of the activity are difficult to predict. The workshop generated some key strategies for helping make research related to living well with dementia more impactful. These are being written up into a document and distributed to all delegates. Delegates lists were shared with the group and new contacts and relationships may be built from the event in the future.
Describe any notable impacts: I think they will be more long term (building of relationships across research and user groups, future research bids for example) Most NB impact of this activity
o Requests for further info: Greater awareness of the studies presented - people asking for slides to be shared so that they could follow the links to the study websites more easily.
o Increase in requests about participation/involvement: People with dementia asking about getting involved in the various studies.
o Plans for future related activity: This was a one off event
o Audience change in views/opinions: Difficult to judge until we see the feedback forms - general view on the day that it was positive to see how much was being done in relation to living well with dementia that they were previously unaware of.
o Own/colleagues change in views: Greater understanding of other large studies - like GREAT and ACTIFCare for example.
o Decision made or influenced
Year(s) Of Engagement Activity 2017
 
Description Banner unfurling 'When we talk you will listen', A Life More Ordinary (ALMO), Touchstones BME dementia service group, Leeds, 15 November 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact The artists have been working with Touchstones BME dementia Service group to create a banner. The Touchstones banner asks us to listen and try to understand the concerns of people living withdementia. One of the symptoms of certain kinds of dementia can be the disturbance of speech and the ability to speak a second language. The banner was officially unfurled alongside a poem where members of the group and the general public attended.
Year(s) Of Engagement Activity 2019
 
Description Banner unfurling, Cottingley Crew, A Life More Ordinary (ALMO), Leeds, 8 June 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact The artists have been working with Young Dementia Leeds to create a banner. The Cottingley Crew banner draws on the themes of togetherness and still being ourselves. The tag line is 'Marching together forward against dementia' and Ian McMillian produced a poem entitled 'Marching Forward' to accompany the banner. The images used represent Leeds and its industrial past. The banner was officially unfurled at an event held in Leeds on Saturday 8 June to which members of the group attended.
Year(s) Of Engagement Activity 2019
 
Description Banner unfurling, Kirklees group, A Life More Ordinary (ALMO), Huddersfield, 22 November 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact The artists have been working with Kirklees group to create a banner. The Kirklees banner represents a campaign for a better and clearer system to access contacts, advice and care and suppport. The banner was officially unfurled alongside a poem in Huddersfield where members of the group and the general public attended.
Year(s) Of Engagement Activity 2019
 
Description Banner unfurling, York DEEP group, A Life More Ordinary (ALMO) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Public unfurling of banner created by York DEEP group, event was attended by 25 people with dementia, 12 students/brass band players performing at the event and 50 members of the public, as well as photographer from local newspaper, TV crew from local BBC news and local radio station
Year(s) Of Engagement Activity 2019
 
Description Blog Post on 'Dementia Studies' Blog 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact Blog post on University of Bradford Dementia Studies site ' What difference does relationship quality make to people with dementia and carers?' . This research was recently published in the Aging and Mental Health https://doi.org/10.1080/13607863.2019.1617238.
Year(s) Of Engagement Activity 2019
URL http://blogs.brad.ac.uk/dementia/what-difference-does-relationship-quality-make-to-people-with-demen...
 
Description Blog by Wendy Mitchell, a person living with dementia, 01 Feburary 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Blog by Wendy Mitchell, a person living with dementia, on meeting where they reflected on the impact of the 'Right to get out and about' banner. Ian Beesley joined the group and gave them an update on the ALMO project and where the banners will be exhibited.
Year(s) Of Engagement Activity 2019
 
Description Blog post on 'Dementia Studies' blog 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact Blog post on University of Bradford Dementia Studies site 'Carers' experience of caring can influence the well-being of people with dementia'
Year(s) Of Engagement Activity 2019
URL http://blogs.brad.ac.uk/dementia/carers-experience-of-caring-can-influence-the-well-being-of-people-...
 
Description Blog post on 'Dementia Studies' blog 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact Blog on University of Bradford Dementia Studies site ' 29th Alzheimer Europe Conference' The Centre for Applied Dementia Studies was well represented at the 29th Alzheimer Europe Conference "Making valuable connections" that was held in The Hague from the 23 to 25 October 2019.
Year(s) Of Engagement Activity 2019
URL http://blogs.brad.ac.uk/dementia/29th-alzheimer-europe-conference/
 
Description Blog post on 'Dementia Studies' by Catherine Quinn,Co-investigator,10 April 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Blog 'Both positive and negative experiences are important for carers' well-being' University of Bradford Website and Tweeted by IDEAL and C Quinn
Year(s) Of Engagement Activity 2019
URL http://blogs.brad.ac.uk/dementia/both-positive-and-negative-experiences-are-important-for-carers-wel...
 
Description Blog post on University of Bradford Dementia Studies site, 'Both positive and negative experiences are important for carers' well-being' by C. Quinn - IDEAL co-investigator, 10 April 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact Blog to raise awareness of research findings to academics and the general public
Year(s) Of Engagement Activity 2019
URL http://blogs.brad.ac.uk/dementia/both-positive-and-negative-experiences-are-important-for-carers-wel...
 
Description Bristol Dementia Event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presented the study at the Bristol Dementia Wellbeing service development day. The audience were primarily GPs, Dementia Practitioners and Dementia Navigators who work in Bristol. The presentation resulted into discussion of the study afterwards.
Year(s) Of Engagement Activity 2017
 
Description British Psychological Society conference 2017: Living well with dementia: a systematic review 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Clare, L., Martyr, A., Nelis. S.M., Quinn, C., Lamont, R., Henderson. C., Jones. I.R., & Victor, C. (2017, May). Living well with dementia: a systematic review. Paper presented at the British Psychological Society Annual Conference, Brighton, UK.
Year(s) Of Engagement Activity 2017
URL https://www1.bps.org.uk/system/files/user-files/Annual%20Conference%202017/AC2017%20ABSTRACT%20BOOK_...
 
Description British Society of Gerontology Conference 2017: Symposium on dementia narratives 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Symposium on 'Dementia narratives: How people understand and adjust to a diagnosis of dementia' at the British Society of Gerontology 2017 conference held in Swansea
Year(s) Of Engagement Activity 2017
URL http://www.swansea.ac.uk/media/BS_Gerontology_Abstract_Book.pdf
 
Description Clare (2015) 50th Anniversary symposium, Cork 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Clare, L. (2015, Sept.). Promoting health and well-being for older people and people with dementia. Presentation at the 50th Anniversary symposium, School of Applied Psychology, University College Cork, Ireland.

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Year(s) Of Engagement Activity 2015
 
Description Clare (2015) Discussion panel, Exeter 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Clare, L. (2015, March). Post-show discussion panel following performance of 'Inside Out of Mind' (a play about dementia) at the Northcott Theatre, Exeter.

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Year(s) Of Engagement Activity 2015
 
Description Clarke AAIC Poster 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Clarke, R., Chen, H.L., & Rusted, J. (2017, July). Exploring psychological wellbeing in working dementia carers. Poster presented at the Alzheimer's Association International Conference, London, UK.
Year(s) Of Engagement Activity 2017
URL http://www.alzheimersanddementia.com/article/S1552-5260(17)31947-7/fulltext
 
Description Conference presenetation, C.Quinn, IDEAL co-investigator, Alzheimer's Society conference, London, UK 21-22 May 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Quinn, C. & Oliver, K. (2019, May). Reflections on Patient and Public Involvement from the 'Action on Living Well: Asking You' (ALWAYs) advisory network. Presentation at Alzheimer's Society conference, London, UK.
Year(s) Of Engagement Activity 2019
 
Description Conference presentation of IDEAL findings 'Psychosocial interventions in Dementia', L. Clare, Demantias conference, London, 14-15 Feburary 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Demantias 21st National conference, presentation to practitionsers and academics under the theme 'Advancing dementia diagnosis and management'
Year(s) Of Engagement Activity 2019
 
Description Conference presentation of IDEAL paper, WISERD July 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Conference presentation of IDEAL paper: Henley, J., Jones, I.R., Hillman, A.E., Woods, B., & Clare, L. (2019). 'We're happy as we are'. What are the psychosocial barriers to seeking a dementia diagnosis? WISERD Annual Conference, Cardiff, July.
Year(s) Of Engagement Activity 2019
URL https://wiserd.ac.uk/news/wiserd-annual-conference-2019-take-place-3rd-4th-july
 
Description Course delivery, Future learn massive open online course (MOOC) Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives, 13 May - 03 June 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Future Learn MOOC (massive open online course) created in partnershiop with UCL - Arts & Dementia online training for arts practioners - Understand how the arts can improve the lives of people with dementia. Course accredited by Royal Society for Public Health and recognised by its CPD scheme
Year(s) Of Engagement Activity 2019
URL https://www.futurelearn.com/courses/dementia-arts/6
 
Description Course delivery, Future learn, massive open online course (MOOC) Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives, 18 November - 19 December 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Future Learn MOOC (massive open online course) created in partnershiop with UCL - Arts & Dementia online training for arts practioners - Understand how the arts can improve the lives of people with dementia. Course accredited by Royal Society fro Public Health and recognised by its CPD scheme
Year(s) Of Engagement Activity 2019
URL https://www.futurelearn.com/courses/dementia-arts/6
 
Description Course delivery, Future learn, massive open online course (MOOC) Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives, 21 janurary-11 Feburary 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Future Learn MOOC (massive open online course) created in partnershiop with UCL - Arts & Dementia online training for arts practioners - Understand how the arts can improve the lives of people with dementia. Course accredited by Royal Society for Public Health and recognised CPD scheme
Year(s) Of Engagement Activity 2019
URL https://www.futurelearn.com/courses/dementia-arts/6
 
Description Course on mental health economics and policy, Hong Kong, 5-9 August 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Martin Knapp presenting about IDEAL - a course 'Special topics in mental health I (Mental health economics and policy)' in the Department of Social Work and Social Administration, Hong Kong University. In addition, the course was open to faculty, third sector organisations and others in Hong Kong, and there were roughly 45 people attending throughout the five days. There were five follow-up requests for information about IDEAL, and referred people to the project website, given that it is so informative.
Year(s) Of Engagement Activity 2019
 
Description DEEP (The UK Network of Dementia Voices) York meeting other groups for A Life More Ordinary (ALMO) banner making 27 Feburary 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact DEEP (The UK Network of Dementia Voices) York meeting other groups for A Life More Ordinary (ALMO) banner making 27 Feburary
Year(s) Of Engagement Activity 2019
 
Description Dementia Awareness Week 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact To mark Dementia Awareness Week 2017, the Ageing Studies Theme at Brunel University hosted a seminar to showcase their dementia related research and public engagement activities. The theme of the seminar was Living Well with Dementia. Prof Christina Victor presented an overview of what the IDEAL study aims to achieve, along with some of the key findings from the systematic review and qualitative work.
Feedback received highlighted the importance of considering the person with dementia in the context of family, friends, and where they live, care should be tailored and not 'one size fits all' and need for greater public understanding and awareness.
Year(s) Of Engagement Activity 2017
 
Description Dementia action week 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Based on IDEAL paper "Caregiver influences on 'living well' for people with dementia: Findings from the IDEAL study, Bradford University and Brunel University press release
Year(s) Of Engagement Activity 2019
 
Description Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives, 2-23 September 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Future Learn MOOC (massive open online course) created in partnershiop with UCL - Arts & Dementia online training for arts practioners - Understand how the arts can improve the lives of people with dementia. Course accredited by Royal Society fro Public Health and recognised by its CPD scheme
Year(s) Of Engagement Activity 2019
URL http://www.edenvalleyartisticnetwork.co.uk/penrith-arts-festival
 
Description Devon Partnership Trust research conference 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Contributes to engagement with Devon Partnership Trust in terms of participating in service developments
Year(s) Of Engagement Activity 2017
URL https://www.dpt.nhs.uk/news/2017-dementia-and-mental-health-research-conference
 
Description E-Bulletin Special Issue 157 2019, Dementia Knowledge Centre, Alzheimer's Society - IDEAL, 1 September 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A newslettser that goes out to Altzhiemers Society members Special issue 157 2019
Year(s) Of Engagement Activity 2019
 
Description Exhibition of A Life More Ordinary (ALMO) banners, Bradford Industrial Museum, June - December 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Exhibition of all of banners and artwork from the A Life More Ordinary (ALMO) project - to raise awareness of Dementia and the challenges and pleasures people with Dementia experience.
Year(s) Of Engagement Activity 2020
URL http://www.theunfurlings.org.uk
 
Description Exhibition of A Life More Ordinary (ALMO) banners, Exeter Library, 19 October - 23 Janurary 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Exhibition of five banners created by people with dementia from DEEP (The UK network of Dementia voices) and artists, including contextual material in a special dementia friendly space, to raise awareness of Dementia and the challenges and pleasures people with Dementia experience
Year(s) Of Engagement Activity 2019
URL http://www.theunfurlings.org.uk
 
Description Exhibition of A Life More Ordinary (ALMO) banners, Gallery Oldham 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Exhibition of a selection of banners and artwork from the A Life More Ordinary (ALMO) project created by The Ragamuffins DEEP (The UK network of Dementia voices) and a selection of their work from previous projects including contextual material - to raise awareness of Dementia and the challenges and pleasures people with Dementia experience.
Year(s) Of Engagement Activity 2020
URL http://www.theunfurlings.org.uk
 
Description Exhibition of A Life More Ordinary (ALMO) banners, Harris Art Gallery, Preston 15 Feburary - 25 April 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Exhibition of a selection of banners and artwork from the A Life More Ordinary (ALMO) project in conjunction with the Harris gallery including contextual material - to raise awareness of Dementia and the challenges and pleasures people with Dementia experience.
Year(s) Of Engagement Activity 2020
URL http://www.theunfurlings.org.uk
 
Description Exhibition of A Life More Ordinary (ALMO) banners, Lighthouse, Poole 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Exhibition of a selection of banners and artwork from the A Life More Ordinary (ALMO) project created by people with dementia from DEEP (The UK network of Dementia voices) and artist Ian Beesley, including contextual material - to raise awareness of Dementia and the challenges and pleasures people with Dementia experience
Year(s) Of Engagement Activity 2020
URL http://www.theunfurlings.org.uk
 
Description Exhibition of A Life More Ordinary (ALMO) banners, People's History Museum Manchester, 18 November 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Exhibition of all banners and artwork from the A Life More Ordinary (ALMO) project created by people with dementia from DEEP (The UK network of Dementia voices) and artist Ian Beesley, held at the People's History Museum Manchester including contextual material. Plus: exhibition catalogue and website - to raise awareness of Dementia and the challenges and pleasures people with Dementia experience
Year(s) Of Engagement Activity 2019
URL http://www.theunfurlings.org.uk
 
Description Exhibition of A Life More Ordinary (ALMO) banners, Thackray Medical Museum, December - May 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Exhibition of a selection of banners and artwork from the A Life More Ordinary (ALMO) project - to raise awareness of Dementia and the challenges and pleasures people with Dementia experience.
Year(s) Of Engagement Activity 2020
URL http://www.theunfurlings.org.uk
 
Description Exhibition of banners created by people with dementia, UK Dementia Congress, Doncaster 5-7 November 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Exhibition of five banners created by people with dementia from DEEP (The UK network of Dementia voices) presented by artist Ian Beesley, including contextual material in a special dementia friendly space, to raise awareness of Dementia and the challenges and pleasures people with Dementia experience
Year(s) Of Engagement Activity 2019
 
Description Exploring God in Dementia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact The session shared the IDEAL project ideas around living well with dementia and the principles of re-ablement and person-centeredness. This was followed by discussion among the attendees of their current activities and support for people with dementia in their congregations and the wider community. The result was therefore the stimulation of thought around better care for people with dementia, but also the sharing of ideas between attendees.
IDEAL contains measures of spirituality and religiosity. By attending this day, Dr Ruth Lamont was able to engage in discussion and hear from both church leaders and people with dementia about their experiences of dementia and religion/spirituality. These discussions will feed into ideas around this element of the IDEAL model. In particular, multiple individuals with dementia talked about their faith as a means through which they made sense of their diagnosis, enabling them to continue to live well. They talked of their faith as allowing them to know they are still of importance even when the things that we typically see as making us human fade (e.g. ability to make choices, be independent, to remember), they described how they achieved meaning through sharing their faith with and supporting others with a diagnosis, and they described how their churches had facilitated their continued involvement in meaningful roles.
Year(s) Of Engagement Activity 2017
 
Description Festival of Social Science Exeter November 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact The event is part the Economic and Social Research Council's (ESRC) annual Festival of Social Science taking place next month. It is part of the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) Project at the University of Exeter.

Dr Nelis said: "Over 850,000 people have a diagnosis of dementia in the UK, our work focuses on how people can 'live well' with dementia. This event will look at how we can better understand the experience of living with dementia and how we can all make a difference and promote accurate portrayals of dementia."

Author Keith Oliver who was diagnosed with early onset dementia at the age of 55, will speak at the event. He will discuss his thoughts on living with Alzheimer's disease, including both the struggles and opportunities he's encountered throughout his diagnosis. He said: "Initially it was such a shock. I hadn't expected dementia at all. I was busy and successful and I loved my job. Yet even on that first day, when I got the diagnosis, I said to my wife 'when one door closes, another door opens'. At that point, I had no idea what those new doors would hold, but actually a lot of it has been very positive."

Researcher Dr Alex Hillman will also be speaking at the event, and will be sharing images like those we often view on TV to encourage audience members to reflect on how dementia is portrayed in mainstream media, and how this media depiction may shape their own views, as well as the experiences of those who live with the condition.

Steve Milton from Innovations in Dementia - a community interest company that works collaboratively with people with dementia to enhance their lives - will then lead a discussion on this topic, focusing specifically on how we can shift the way people with dementia are, often negatively, defined and described in the media.
Year(s) Of Engagement Activity 2017
URL http://medicine.exeter.ac.uk/news/articles/publicinvitedtointeractiv.html
 
Description GREAT / IDEAL Keynote Glasgow 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Clare, L. (2018). Cognitive rehabilitation for people living with dementia: a practical framework for enablement. Keynote address. British Association for Behavioural and Cognitive Psychotherapies Conference, Glasgow, July. The presentation included discussion of the IDEAL programme. Plans for future related activity were briefly discussed at the end of the symposium.
Year(s) Of Engagement Activity 2018
URL http://babcpconference.com/programme/keynotes_2018.htm
 
Description GREAT/IDEAL National Dementias Conference Feb. 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Clare, L. (2019, Feb.) Psychosocial interventions in dementia: enabling people with dementia to 'live well'. Presentation at the National Dementias Conference, London.
Year(s) Of Engagement Activity 2019
URL http://www.dementiasconference.com/Speakers
 
Description Gerontological Society of America (GSA) Annual Scientific Meeting, IDEAL Symposium, Phoenix, Arizona, 11-15 November 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact IDEAL symposium led by Professor Christina Victor including 3 papers based on IDEAL findings:

Clare, L., Martyr, A., Quinn, C., & Victor, C. (2019). Living alone with dementia: findings from
the IDEAL cohort.

Rippon, I., Quinn, C., Martyr, A., Victor, C., Matthews, F., & Clare, L. (2019). Prevalence of
loneliness and isolation among people with dementia and their carers.

Victor, C., Rippon, I., Martyr, A., Matthews, F., & Clare, L. (2019). How lonely and isolated are
older people with dementia and their carers: a dyadic analysis.
Year(s) Of Engagement Activity 2019
 
Description IAGG Cohort 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Clare, L., Nelis, S.M., Wu, Y.-T., Martyr, A., Knapp, M., Henderson, C., Lamont, R.A., & Matthews, F.E. (2017). Improving the experience of dementia and enhancing active life (the ideal study): cohort profile. Innovation in Aging, 1, 1344. doi: 10.1093/geroni/igx004.4934
Year(s) Of Engagement Activity 2017
URL https://academic.oup.com/innovateage/article/1/suppl_1/1344/3902181
 
Description IAGG Duality 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Jones, I.R., Hillman, A., Quinn, C., & Clare, L. (2017). Dualities of dementia accounts: biographical reconstruction and narrative economies. Innovation in Aging, 1, 1344-1345. doi: 10.1093/geroni/igx004.4936
Year(s) Of Engagement Activity 2017
URL https://academic.oup.com/innovateage/article/1/suppl_1/1344/3902183
 
Description IAGG Symposium 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The symposium presented initial findings from the study. Clare, L. (2017). Improving the experience of Dementia and Enhancing Active Life: early findings from the IDEAL cohort. Innovation in Aging, 1, 1344. doi: 10.1093/geroni/igx004.4933
Year(s) Of Engagement Activity 2017
URL https://academic.oup.com/innovateage/article/1/suppl_1/1344/3902180
 
Description IAGG Systematic review 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Martyr, A., Wu, Y., Morris, R., Hindle, J., Rusted, J., Thom, J., Clarke, R., & Clare, L. (2017). Factors associated with quality of life in dementia: a correlational meta-analysis. Innovation in Aging, 1, 1344. doi: 10.1093/geroni/igx004.4935
Year(s) Of Engagement Activity 2017
URL https://academic.oup.com/innovateage/article/1/suppl_1/1344/3902182
 
Description IAGG representing dementia 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Hillman, A., Jones, I.R., Quinn, C., & Clare, L. (2017). Letting go of coherence: the challenges of representing dementia. Innovation in Aging, 1, 1345. doi: 10.1093/geroni/igx004.4937
Year(s) Of Engagement Activity 2017
URL https://academic.oup.com/innovateage/article/1/suppl_1/1345/3902184
 
Description IDEAL - ALMO Blog May 2018 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact A blog on the Alzheimer's Society website: This artists' 'chapbook' encourages positive thinking about dementia: A new chapbook collaboration between artists and people living with dementia is promoting positivity through poems, photos and drawings. It outlines one of the chapbooks from the IDEAL KE linked studies from 'A Life More Ordinary'
Year(s) Of Engagement Activity 2018
URL https://blog.alzheimers.org.uk/research/chapbook-positive-thinking/
 
Description IDEAL / ALMO Symposium UK Dementia Congress Nov. 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact 60 people (health-care professionals, researchers and people with dementia and their carers) heard about the IDEAL study, its linked arts project and ALWAYs group through a symposium. Three people with dementia and three people who are/have cared for someone with dementia from the IDEAL ALWAYs group talked during the symposium, sharing their personal experiences of advising on the IDEAL programme to an audience of 60 people. The group were overwhelmingly positive about their involvement in the ALWAYs group and talked about the benefits they get from sharing their experiences in a safe and friendly environment.
The audience also provided much positive feedback e.g. Feedback from attendees- "Good talks, interesting to ensure value with PPI, great ideas" and "Provided a great insight to all the work being conducted".

The session led to people thinking differently and wanting to implement change in their work practices with people with dementia:
Feedback from attendee:
"Made me think about how we give our info to PPI - need to improve this"
"The 'being useful' by being part of the research project is something I can utilise at work. I am part of the CRT project at [carehome name redacted] and I can highlight how helpful/useful the residents would be in contributing to the research and how it will help others in the future."

As well as leading to changes in thought and thinking around future plans, the symposium engaged people with the research for future dissemination. Seven people gave their contact details to receive updates on the project.
The session also received a lot of attention during and afterwards on Twitter, encouraging further awareness of IDEAL and the agenda to increase the ability to live well with dementia.
Year(s) Of Engagement Activity 2018
URL https://www.dementiaaction.org.uk/news/26705_uk_dementia_congress_2018
 
Description IDEAL AAIC Chicago July 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Clare. L. (2018; July). A comprehensive model of factors associated with subjective perceptions of living well with dementia: findings from the IDEAL study. Presentation at The Alzheimer's Association International Conference, Chicago, USA.
Year(s) Of Engagement Activity 2018
URL https://www.alz.org/aaic/overview.asp
 
Description IDEAL ADI Chicago Conference July 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Clare. L. (2018; July). Living well with dementia: findings from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study. Presentation at the Alzheimer's Disease International (ADI) Conference, Chicago.
Keith Oliver, living with dementia, joined Prof. Linda Clare in discussing living well with dementia drawing on both personal experience and findings from the IDEAL study. Plans for future related activity were briefly discussed at the end of the talk. There was interest from Japan and Brazil in developing IDEAL programmes in the future.
Year(s) Of Engagement Activity 2018
URL https://www.adi2018.org/sessions/plenary-5-psychosocial-interventions/
 
Description IDEAL AH Radio Wales 2016 
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 Dr. Alexandra Hillman participated in a radio programme linked with Dementia Awareness Week in May 2016. During the programme Alex discussed the IDEAL project.
Year(s) Of Engagement Activity 2016
 
Description IDEAL ALMO Press Release Telegraph & Argus August 2018 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact The ALMO project KE linked with IDEAL had an article campaigning for the right to 'a grand day out in the Telegraph & Argus on August 7th 2018 promoting their showing the positive and negative sides of travel for people with dementia.
Year(s) Of Engagement Activity 2018
URL http://www.thetelegraphandargus.co.uk/news/16404160.campaigning-for-better-public-transport-services...
 
Description IDEAL ALWAYS (PPI) group meeting, 23 April 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact ALWAYS (PPI) group meeting - work on concept of living well with dementia, giving reflections to build on the data from IDEAL, worked with Nicola Hart to help to shape the recommendations for commissioners using the IDEAL findings
Year(s) Of Engagement Activity 2019
 
Description IDEAL BBC Breakfast 2015 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Chris Roberts, a participant in IDEAL from north Wales, appeared on BBC Breakfast program on 14/08/15 to discuss participation in dementia research and the Join Dementia Research Initiative (JDR). Chris directly mentioned his involvement with the IDEAL study.
Year(s) Of Engagement Activity 2015
 
Description IDEAL BSG July 2018 Hillman 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Alexandra Hillman, Ian Jones, Catherine Quinn, Sharon Nelis, Linda Clare (2018, July). Risking vulnerability: The precariousness of living with and caring for those with dementia. Presentation at the British Society of Gerontology Annual Conference, Manchester.
Year(s) Of Engagement Activity 2018
URL https://app.oxfordabstracts.com/stages/25/programme-builder/submission/30522?backHref=/events/28/ses...
 
Description IDEAL BSG July 2018 Jones 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Ian Jones, Alexandra Hillman, Catherine Quinn, Sharon Nelis, Ruth Lamont, and Linda Clare (2018, July). Letting go of coherence: Qualitative interviews and the challenges of representing dementia. Presentation at the British Society of Gerontology Annual Conference, Manchester.
Year(s) Of Engagement Activity 2018
 
Description IDEAL BSG July 2018 Rippon 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Rippon, I. & Victor, C.R. (2018, July). Which is the best way to measure loneliness in people with dementia? A comparison of single and multi-item measures. Presentation at the British Society of Gerontology Annual Conference, Manchester.
Year(s) Of Engagement Activity 2018
 
Description IDEAL Blog Quinn 2017 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Interviewing people with dementia: Practical tips
Guest Blog written by Dr Catherine Quinn, Senior Research Fellow, University of Exeter on Tuesday February 28, 2017
Year(s) Of Engagement Activity 2017
URL http://enrich.nihr.ac.uk/blogpost/interviewing-people-with-dementia-practical-tips
 
Description IDEAL Bristol AK Feb. 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact • Title of presentation: Improving the experience of dementia and enhancing active life: living well with dementia The IDEAL study.
• Title of event: Bristol Dementia Wellbeing Service - research group meeting in Bristol 06/02/17
• Attendees: NHS staff, healthcare practitioners and managers from the Bristol Dementia Wellbeing Service, Devon Partnership NHS Trust
• Attendees increased their understanding of the IDEAL aims and intended outcomes; expressed their interest in using the study results to inform their practice
Year(s) Of Engagement Activity 2017
 
Description IDEAL Clare Ill Rep 2016 Press 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact People Who Consider Dementia an Illness Have a More Negative Outlook
Neuroscience news.com
Based on the paper: "I Don't Think of it as an illness": Illness Representations in Mild to Moderate Dementia" by Linda Clare, Catherine Quinn, Ian Rees Jones and Robert T Woods in Journal of Alzheimer's Disease. Published online February 27 2016 doi:10.3233/JAD-150794
Year(s) Of Engagement Activity 2016
URL http://neurosciencenews.com/dementia-illness-negativity-3776/
 
Description IDEAL Clare Ill Rep 2016 Press ii 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Dementia perceived as "illness" rather than aging symptom can lower mood
www.medicalxpress.com
Linda Clare et al. "I Don't Think Of It As An Illness": Illness Representations in Mild to Moderate Dementia, Journal of Alzheimer's Disease (2016). DOI: 10.3233/JAD-150794
Year(s) Of Engagement Activity 2016
URL http://medicalxpress.com/news/2016-03-dementia-illness-aging-symptom-mood.html
 
Description IDEAL Clarke NIHR Poster Presentation 2015 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation poster presentation
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Clarke, T., Chen, L., Rusted, J. (December 2015). Work and life balance among working family carers of a Person with Dementia. Poster presentation at the NIHR Clinical Research Network - Kent, Surrey and Sussex event. Poster was awarded First prize.

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Year(s) Of Engagement Activity 2015
 
Description IDEAL Comorbidity Blog 08/11/18 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Health services must address multiple conditions in dementia care - a blog based on IDEAL publication
Sharon M Nelis, Yu-Tzu Wu, Fiona E Matthews, Anthony Martyr, Catherine Quinn, Isla Rippon, Jennifer Rusted, Jeanette M Thom, Michael D Kopelman, John V Hindle, Roy W Jones, Linda Clare; The impact of comorbidity on the quality of life of people with dementia: findings from the IDEAL study, Age and Ageing, , afy155, https://doi.org/10.1093/ageing/afy155
Year(s) Of Engagement Activity 2018
URL https://www.bgs.org.uk/blog/health-services-must-address-multiple-conditions-in-dementia-care
 
Description IDEAL Comorbidity Press Release November 2018 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Press release Health services must address multiple conditions in dementia care. Most people living with dementia also have at least one other health condition, and health services need to adapt to optimise their health and quality of life. Based on the publication Nelis, S.M., Wu, Y.-T., Matthews, F.E., Martyr, A., Quinn, C., Rippon, I., Rusted, J., Thom, J.M., Kopelman, M.D., Hindle, J.V., Jones, R.W., & Clare, L. (2018). The impact of comorbidity on the quality of life of people with dementia: findings from the IDEAL study. Age and Ageing. Advance online publication. doi: 10.1093/ageing/afy155
Year(s) Of Engagement Activity 2018
URL https://www.exeter.ac.uk/news/featurednews/title_690975_en.html
 
Description IDEAL DAA London February 2019 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation by Nicola Hart & Keith Oliver on the IDEAL study at the National DAA Annual Conference Wednesday 06 February 2019, London
Year(s) Of Engagement Activity 2019
URL https://www.dementiaaction.org.uk/events/28164_national_daa_annual_conference
 
Description IDEAL ESA Newsletter q1 2017 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Rippon, I (2017). Improving the experience of dementia and enhancing active life: living well with dementia - The IDEAL study. Ageing in Europe: The Newsletter of the Research Network on Ageing in Europe. Winter, Issue 20, p.4
Year(s) Of Engagement Activity 2017
URL http://ageing-in-europe.net/images/newsletter20.pdf
 
Description IDEAL ESRC Website Dementia Awareness 2015 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Involving people with dementia in research.
Posted on ESRC website as part of Dementia Awareness Week 22/05/15


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Year(s) Of Engagement Activity 2015
URL http://www.esrc.ac.uk/news-and-events/features-casestudies/features/34363/involving-people-with-deme...
 
Description IDEAL Event Blog November 2018 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Aiming for an IDEAL world for everyone affected by dementia - blog on Alzheimer's Society UK website
Year(s) Of Engagement Activity 2018
URL https://www.alzheimers.org.uk/blog/aiming-ideal-world-everyone-affected-dementia
 
Description IDEAL FoSS Cardiff Henley Nov. 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Henley, J. (2018, November). Could community fitness help combat Dementia? Presentation at The ESRC Festival of Social Sciences: Everyday fitness for All event, Cardiff. Part of the launch of accessible exercise machines in Llanishen leisure centre, part of the Festival of Social Science. The event consisted of talks from people with disabilities who had campaigned for the accessible exercise machines to be available in the leisure centre, a physiotherapist and NHS manager, and a social scientist talking about the benefits of exercise. There was a break for people to use the machines and a "yoga mobility" class and then a panel discussion with the speakers. The event connected different stakeholders within the field
Year(s) Of Engagement Activity 2018
 
Description IDEAL GSA Clare 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Clare, L., Quinn, C., Woods, R.T., & Jones, I.R. (2015, Nov.). Understanding and adjusting to dementia: implications for how we talk to people about the condition. The Gerontological Society of America's 68th Annual Scientific Meeting, Orlando, Florida.

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Year(s) Of Engagement Activity 2015
 
Description IDEAL GSA Jones 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Jones, I.R., Victor, C. & Clare, L. on behalf of the IDEAL study team (2015, Nov.) Capitals, assets and resources: a framework for understanding the lived experience of dementia. Presentation at the Gerontological Society of America's 68th Annual Scientific Meeting, Orlando, Florida

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Year(s) Of Engagement Activity 2015
 
Description IDEAL GSA Jones Social Class 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Jones, I.R. (2015, Nov.). Social Class, Dementia, and the Social Imaginary of the Fourth Age. Presentation at the Gerontological Society of America's 68th Annual Scientific Meeting, Orlando, Florida

Stimulated discussion of research evidence on social class and dementia in the symposium and following symposium
Year(s) Of Engagement Activity 2015
 
Description IDEAL GSA Morris 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Morris, R., Martyr, A., Nelis, S.M,, Markova, I.S., Roth, I., Woods, R.T., & Clare, L. (2015, Nov.) Being less aware of functional decline may preserve emotional well-being in people with dementia. Presentation at the Gerontological Society of America's 68th Annual Scientific Meeting, Orlando, Florida

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Year(s) Of Engagement Activity 2015
 
Description IDEAL GSA Victor 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Victor, C., Pikhartova, J., & Woodbridge, R. (2015, Nov.) Is loneliness a cause or consequence of dementia? Presentation the Gerontological Society of America's 68th Annual Scientific Meeting, Orlando, Florida

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Year(s) Of Engagement Activity 2015
 
Description IDEAL GSA Victor Boston Nov. 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Victor, C. (2018; Nov.). The IDEAL Study Model of Living Well With Dementia. Presentation at the Gerontological Society of America's 70th Annual Scientific Meeting, Boston.
Year(s) Of Engagement Activity 2018
 
Description IDEAL GW4 Aging and Dementia, Bristol 2015 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation poster presentation
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Clare, L. (2015, Jan.). Living well with dementia: the IDEAL study. Poster presentation at the GW4 Aging and Dementia (GW4AD) Consortium Conference, Bristol.

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Year(s) Of Engagement Activity 2015
 
Description IDEAL Henley National Social Care Conference September 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Display at the National Social Care Conference in Wales - opportunity to discuss work with social care planners and practitioners.
Year(s) Of Engagement Activity 2018
URL https://socialcare.wales/events/national-social-care-conference?record-language-choice=en-cy
 
Description IDEAL Hillman BSA 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Hillman, A. (2016, Feb.). Letting go of coherence: The challenges of representing dementia. Presentation at the British Sociological Association (BSA) Ageing, Body and Society Study Group 7th Annual Conference entitled: 'Ageing and Culture' at the University of Manchester, UK
Year(s) Of Engagement Activity 2016
 
Description IDEAL Hillman, A. & Jones, I.R. (2016). BSA Birmingham 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Hillman, A. & Jones, I.R. (2016). Dualities of dementia accounts: Biographical reconstruction and narrative economies. British Sociological Association's Medical Sociology Group's Annual Conference 7th-9th September 2016, Aston University, Birmingham.
The discussion and feedback following the talk has helped refine and focus our analytical interpretations of the data and will inform how we take this forward for publication.
Year(s) Of Engagement Activity 2016
URL https://www.britsoc.co.uk/events/medsoc
 
Description IDEAL INS Morris Prague July 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Morris, R. (2018, July). Measuring Subjective Accounts of Symptoms and Diagnosis in People with Dementia: The Development of the RADIX. Presentation at the International Neuropsychological Society 2018 Mid-Year Meeting, Prague.
Year(s) Of Engagement Activity 2018
URL http://www.ins2018.org/program-at-a-glance
 
Description IDEAL Illness Rep WISERD Website 2016 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Illness representations in caregivers of people with dementia.
News item for Wales Institute of Social Economic Research Data and Methods (WISERD) at Cardiff University website January 2016.
http://www.wiserd.ac.uk/news/latest-news/better-understanding-caregivers-perceptions-dementia-could-improve-level-support-they-are-offered-new-paper-finds/#sthash.kb7Tnbp9.dpbs
Year(s) Of Engagement Activity 2016
URL http://www.wiserd.ac.uk/news/latest-news/better-understanding-caregivers-perceptions-dementia-could-...
 
Description IDEAL Infographic Model Carer 2018 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Infographic: Living well with dementia: Findings from the IDEAL programme IDEAL based on the publication Clare, L., Wu, Y.-T., Quinn, C., Jones, I.R., Victor, C.R., Nelis, S.M., Martyr, A., Litherland, R., Pickett, J.A., Hindle, J.V., Jones, R.W., Knapp, M., Kopelman, M.D., Morris, R.G., Rusted, J.M., Thom, J.M., Lamont, R.A., Henderson, C., Rippon, I., Hillman, A., Matthews, F.E., & On behalf of the IDEAL study team. (2018). A comprehensive model of factors associated with capability to "live well" for family caregivers of people living with mild-to-moderate dementia: findings from the IDEAL study. Alzheimer Disease and Associated Disorders. Advance online publication. doi: 10.1097/WAD.0000000000000285
Year(s) Of Engagement Activity 2018
URL http://www.idealproject.org.uk/activities/info/
 
Description IDEAL Infographic Model Person with Dementia 2018 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Infographic: Living well with dementia: What helps people live well Findings from the IDEAL programme based in the publication Clare, L., Wu, Y.-T., Jones, I.R., Victor, C.R., Nelis, S.M., Martyr, A., Quinn, C., Litherland, R., Pickett, J.A., Hindle, J.V., Jones, R.W., Knapp, M., Kopelman, M.D., Morris, R.G., Rusted, J.M., Thom, J.M., Lamont, R.A., Henderson, C., Rippon, I., Hillman, A., Matthews, F.E., & On behalf of the IDEAL study team. (2018). A comprehensive model of factors associated with subjective perceptions of "living well" with dementia: findings from the IDEAL study. Alzheimer Disease and Associated Disorders. Advance online publication. doi: 10.1097/WAD.0000000000000286
Year(s) Of Engagement Activity 2018
URL http://www.idealproject.org.uk/activities/info/
 
Description IDEAL Infographic Systematic Review 2018 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Infographic: Living well with dementia: A review of the literature based on the IDEAL publication Martyr, A., Nelis, S.M., Quinn, C., Wu, Y.-T., Lamont, R.A., Henderson, C., Clarke, R., Hindle, J.V., Thom, J.M., Jones, I.R., Morris, R.G., Rusted, J.M., Victor, C.R., & Clare, L. (2018). Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being, and life satisfaction in people with dementia. Psychological Medicine, 48, 2130-2139. doi: 10.1017/S0033291718000405
Year(s) Of Engagement Activity 2018
URL http://www.idealproject.org.uk/activities/info/
 
Description IDEAL Living Well Blog 2015 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact 'Living well with dementia' a blog on the WISERD website in March 2015
Year(s) Of Engagement Activity 2015
URL http://blogs.cardiff.ac.uk/wiserd/2015/03/13/living-well-with-dementia/
 
Description IDEAL Magazine of the Alzheimer's Society 2015 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Article 'IDEAL: how to 'live well', June 2015, Living with Dementia, The Magazine of the Alzheimer's Society, pg. 23

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Year(s) Of Engagement Activity 2015
URL https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2977&pageNumber=7
 
Description IDEAL Mar 2018 Newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact The newsletter was issued to everyone who has participated in the study to date to provide an update on study progress and to note dates for future activity. It was also distributed to the research network staff involved in the process of participant recruitment. We shared the newsletters with other key stakeholders such as the Older People's Commissioner for Wales, the NIHR National Director for Dementia Research, Alzheimer's Society Branches throughout the UK, The Faculty for the Psychology of Older People (FPOP) Members and our Project Advisory Group.
Year(s) Of Engagement Activity 2018
URL http://www.idealproject.org.uk/news/newsletters/
 
Description IDEAL Martyr, A. & Clare, L. (2016). INS London 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Martyr, A. & Clare, L. (2016, July). Awareness of functional ability in people with early-stage dementia. Poster presentation at the International Neuropsychological Society mid-year conference, London. Poster presentation.
Academics and clinicians asked for further information about the content of the poster. Particularly which rating of functional ability to rely on in clinical and research settings. This may change views/opinions of the reliability of functional ratings in these settings. Also discussed collaboration with researchers at the University of California, San Diego who are working on a systematic review.
Year(s) Of Engagement Activity 2016
 
Description IDEAL Masterclass Alz. Society Rep. 2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Masterclass conducted by Cristina Ariza from the Alzheimer's Society on June 15th 2016 entitled 'Supporting people with dementia'. Over 50 researchers in attendance.
Year(s) Of Engagement Activity 2016
 
Description IDEAL Masterclass CV 2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Victor, C. Masterclass: Loneliness in people with dementia. Held on June 16th 2016 with @ 55 researchers.
Year(s) Of Engagement Activity 2016
 
Description IDEAL Models Release December 2018 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact To raise awareness of the two main articles from the IDEAL programme, to disseminate findings and to engage with health care professionals, people with dementia and carers and the general public. Based on the following 2 papers:
Clare, L., Wu, Y.-T., Jones, I.R., Victor, C.R., Nelis, S.M., Martyr, A., Quinn, C., Litherland, R., Pickett, J.A., Hindle, J.V., Jones, R.W., Knapp, M., Kopelman, M.D., Morris, R.G., Rusted, J.M., Thom, J.M., Lamont, R.A., Henderson, C., Rippon, I., Hillman, A., Matthews, F.E., & On behalf of the IDEAL study team. (2018). A comprehensive model of factors associated with subjective perceptions of "living well" with dementia: findings from the IDEAL study. Alzheimer Disease and Associated Disorders. Advance online publication. doi: 10.1097/WAD.0000000000000286 (open access)

Clare, L., Wu, Y.-T., Quinn, C., Jones, I.R., Victor, C.R., Nelis, S.M., Martyr, A., Litherland, R., Pickett, J.A., Hindle, J.V., Jones, R.W., Knapp, M., Kopelman, M.D., Morris, R.G., Rusted, J.M., Thom, J.M., Lamont, R.A., Henderson, C., Rippon, I., Hillman, A., Matthews, F.E., & On behalf of the IDEAL study team. (2018). A comprehensive model of factors associated with capability to "live well" for family caregivers of people living with mild-to-moderate dementia: findings from the IDEAL study. Alzheimer Disease and Associated Disorders. Advance online publication. doi: 10.1097/WAD.0000000000000285
Year(s) Of Engagement Activity 2018
URL http://www.exeter.ac.uk/news/featurednews/title_698065_en.html
 
Description IDEAL NIHR Press Release 2016 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact NIHR Press Release 2016 - Getting involved in research could help patients cope with dementia
Year(s) Of Engagement Activity 2016
 
Description IDEAL NIHR Website 2015 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Article on the NIHR website Posted May 2015
Nottinghamshire family back 'Join Dementia Research'


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Year(s) Of Engagement Activity 2015
URL http://www.crn.nihr.ac.uk/news/nottinghamshire-family-back-join-dementia-research/?h=37
 
Description IDEAL Nelis PPI March 2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Nelis, S.M. (2016, Mar.) Involving people with dementia and carers in the 'Improving the experience of Dementia and Enhancing Active Life' (IDEAL) study. Presentation at the Patient and Public Involvement and Dementia Workshop. The University of Exeter Medical School, Exeter, UK.
Capacity building event for researchers working in the area of dementia.
Year(s) Of Engagement Activity 2016
 
Description IDEAL Network Training 2015 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact IDEAL Training events in London 17th and 19th June 2015. Trained @ 100 research network staff in IDEAL procedures and working with people with dementia.
Year(s) Of Engagement Activity 2015
 
Description IDEAL Network Training 2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact IDEAL Training events in London 15th and 16th June 2016. Trained @ 100 research network staff in IDEAL procedures and working with people with dementia.
Year(s) Of Engagement Activity 2016
 
Description IDEAL Newsletter 2 Dec 2015 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact The second 'Living Well and Enhancing Active Life: The IDEAL study' newsletter was distributed in December 2015. The newsletter was issued to everyone who has participated in the study to date to provide an update on study progress and to note dates for future activity. It was also distributed to the research network staff involved in the process of participant recruitment. We shared the newsletters with other key stakeholders such as the Older People's Commissioner for Wales, the NIHR National Director for Dementia Research, Alzheimer's Society Branches throughout the UK, The Faculty for the Psychology of Older People (FPOP) Members and our Project Advisory Group.
Year(s) Of Engagement Activity 2015
URL http://www.idealproject.org.uk/research/newsletters/
 
Description IDEAL Newsletter June 2017 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact The newsletter was issued to everyone who has participated in the study to date to provide an update on study progress and to note dates for future activity. It was also distributed to the research network staff involved in the process of participant recruitment. We shared the newsletters with other key stakeholders such as the Older People's Commissioner for Wales, the NIHR National Director for Dementia Research, Alzheimer's Society Branches throughout the UK, The Faculty for the Psychology of Older People (FPOP) Members and our Project Advisory Group.
Year(s) Of Engagement Activity 2017
URL http://www.idealproject.org.uk/news/newsletters/
 
Description IDEAL Newsletter November 2018 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact The newsletter was issued to everyone who has participated in the study to date to provide an update on study progress and to note dates for future activity. It was also distributed to the research network staff involved in the process of participant recruitment. We shared the newsletters with other key stakeholders such as the Older People's Commissioner for Wales, the NIHR National Director for Dementia Research, Alzheimer's Society Branches throughout the UK, The Faculty for the Psychology of Older People (FPOP) Members and our Project Advisory Group.
Year(s) Of Engagement Activity 2018
URL http://www.idealproject.org.uk/news/newsletters/
 
Description IDEAL PPI Blog Exeter Medical September 2018 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact The IDEAL project PPI group (ALWAYs) reflect on their contributions to dementia research at Exeter on the Exeter Dementia Blog.
Year(s) Of Engagement Activity 2018
URL http://blogs.exeter.ac.uk/dementia/2018/10/29/reflecting-on-ppi/
 
Description IDEAL Panaroma May 2016 
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 Public/other audiences
Results and Impact Panaroma documentary: Living with Dementia: Chris's Story. Featured Chris talking about his experience of living with dementia and he took part in the IDEAL study with Co-I Dr. Anthony Martyr during the programme.
Year(s) Of Engagement Activity 2016
URL http://www.bbc.co.uk/iplayer/episode/b07dxmyh/panorama-living-with-dementia-chriss-story
 
Description IDEAL Podcast: Research outside the NHS setting May 2018 
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 Postgraduate students
Results and Impact Podcast for Dementia Researcher, a network of early career researchers (https://www.dementiaresearcher.nihr.ac.uk/). Podcast focused on research outside the NHS setting and covered topics around working in care homes and hospital. Also covered ethical issues around conducting research with people with dementia.
Year(s) Of Engagement Activity 2018
URL https://www.dementiaresearcher.nihr.ac.uk/research-outside-the-nhs-setting/
 
Description IDEAL Presentation Dementia and You Quinn Oct. 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Quinn, C. (2018, October). Living well with dementia. Presentation at 'Dementia and You: Protecting your health and wealth' event organised by BRACE and the University of Exeter. Exeter, UK.
Event jointly organised by the charity BRACE and the University of Exeter.
At the end of the event there was opportunity for the audience to ask the speakers questions.
Year(s) Of Engagement Activity 2018
URL https://www.alzheimers-brace.org
 
Description IDEAL Press Article Eastwood 2015 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Pili brings dementia into focus
Featured in the Eastwood Advertiser, 19 May 2015


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Year(s) Of Engagement Activity 2015
URL http://www.eastwoodadvertiser.co.uk/news/local/pili-brings-dementia-into-focus-1-7267534
 
Description IDEAL Press Article Hucknall 2015 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Pili brings dementia into focus
Featured in the Eastwood Advertiser, 19 May 2015


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Year(s) Of Engagement Activity 2015
URL http://www.hucknalldispatch.co.uk/news/local/pili-brings-dementia-into-focus-1-7267534
 
Description IDEAL Press Article Mansfield 2015 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Pili brings dementia into focus
Featured in the Mansfield and Ashfield Chad Tuesday 19 May 2015


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Year(s) Of Engagement Activity 2015
URL http://www.chad.co.uk/news/health/pili-brings-dementia-into-focus-1-7267534
 
Description IDEAL Press Article Newark 2015 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Project into dementia research helped family
Featured in the Newark Advertiser, May 21st 2015 pg. 24.


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Year(s) Of Engagement Activity 2015
 
Description IDEAL Press Article Worksop 2015 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Pili brings dementia into focus
Featured in the Hucknall Dispatch, 19 May 2015


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Year(s) Of Engagement Activity 2015
URL http://www.worksopguardian.co.uk/news/local/pili-brings-dementia-into-focus-1-7267534
 
Description IDEAL Press Article Yorkshire 2015 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Pili brings dementia into focus
Featured in the Yorkshire Evening Post, Tuesday 19 May 2015


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Year(s) Of Engagement Activity 2015
URL http://www.yorkshireeveningpost.co.uk/news/latest-news/top-stories/pili-brings-dementia-into-focus-1...
 
Description IDEAL Programme Event London Nov. 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The IDEAL Programme held an event to discuss findings from the study and to develop an action plan for people living with dementia. Through the event, we were able to successfully engage with a range of potential knowledge users for the findings, including policy makers, service managers, health and social care professionals, third sector colleagues and people with dementia and their carers. This helped to raise awareness of the IDEAL cohort and the findings to date. It also provided a platform to engage with knowledge users to shape the next steps of the research. This will ensure the findings are relevant to their intended audiences and will, therefore, maximise the impact. During the event, attendees developed an action plan for policy and practice in response to the findings to improve the quality of life for people with dementia. This stimulated commitment from attendees to take their own actions, and also developed ideas for actions that other people could be taking and where we should be focusing our influencing efforts.
Year(s) Of Engagement Activity 2018
 
Description IDEAL Programme Newsletter, 01 June 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Study participants or study members
Results and Impact The first 'Living Well and Enhancing Active Life: The IDEAL programme' newsletter was distributed in June 2019. The newsletter included a feature on the unfurling of the Budding Friends' banner in Exeter (p.4).
Year(s) Of Engagement Activity 2019
URL http://www.idealproject.org.uk/activities/newsletters/
 
Description IDEAL Programme Newsletter, Fuburary 2020 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Study participants or study members
Results and Impact Newsletter featured IDEAL progress, projects, publications and findings and activities to engage with including wher eto see the 'Dementia banners', also viewed by Clinical Research network staff.
Year(s) Of Engagement Activity 2020
URL http://www.idealproject.org.uk/media/universityofexeter/schoolofpsychology/ideal/documents/IDEAL_Pro...
 
Description IDEAL Project Newsletter 2016 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact IDEAL Newsletter No. 3 August 2016
Year(s) Of Engagement Activity 2016
URL http://www.idealproject.org.uk/research/newsletters/
 
Description IDEAL Quinn Blog March 2018 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Day in the life of a researcher Dr Catherine Quinn gives us a glimpse into her work on the IDEAL grant on a blog aimed at researchers.
Year(s) Of Engagement Activity 2018
URL https://www.dementiaresearcher.nihr.ac.uk/day-in-the-life-of-a-researcher/
 
Description IDEAL Research Showcase, Cornwall Partnership 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Quinn, C. (2015, Oct). The IDEAL Project. Research Showcase, Cornwall Partnership NHS Foundation Trust. Eden Project.

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Year(s) Of Engagement Activity 2015
 
Description IDEAL SDCRN Newsletter 2016 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact IDEAL upodate in the Dementia reserach Newsletter from the Scottish Dementia Clinical Research Network (SDCRN) Newsletter Summer 2016, pg. 2
Year(s) Of Engagement Activity 2016
 
Description IDEAL Site Event 2Gether May 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presentation of some of the findings from Time 1 of the IDEAL study to researchers from 2gether NHS foundation trust Trust and members of Memory Assessment Service.
Year(s) Of Engagement Activity 2018
 
Description IDEAL Site Event Hereford March 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presentation of the Time findings of the IDEAL study to clinicians from 2gether Trust including the IDEAL study local PI.
Year(s) Of Engagement Activity 2018
 
Description IDEAL Site Event Lancashire May 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presentation of some of the findings from Time 1 of the IDEAL study to researchers from Lancashire Care NHS Foundation Trust and members of Flyde Coast Memory Service.
Year(s) Of Engagement Activity 2018
 
Description IDEAL Site Event Leeds May 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presentation of some of the findings from Time 1 of the IDEAL study at a Dementia Awareness Event organised by Leeds and York Partnership Trust.
Year(s) Of Engagement Activity 2018
 
Description IDEAL Site Event Newcastle May 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation of some of the findings from Time 1 of the IDEAL study at the Northumberland, Tyne and Wear Research and Development Conference 2018.
Year(s) Of Engagement Activity 2018
 
Description IDEAL Study International Workshop - Feb 2019 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A two day event bringing together international researchers in dementia to discuss collaborations based on the IDEAL programme in order to understand the experience of living with dementia in different countries. This included representatives from Germany, New Zealand, Brazil, Ireland, Taiwan, Japan, Lebanon, Canada, USA.
Year(s) Of Engagement Activity 2019
 
Description IDEAL Systematic Review Blog Spetember 2018 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Findings from the IDEAL project are described in the blog: How you can support people to live well with dementia posted on the Exeter Dementia Blog.
Year(s) Of Engagement Activity 2018
URL http://blogs.exeter.ac.uk/dementia/2018/09/21/how-you-can-support-people-to-live-well-with-dementia/
 
Description IDEAL Victor (2015) NIHR CRN Thames Valley 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Victor, C. (2015, Mar.). Living well with dementia: the IDEAL study. Presentation at the 'New Directions in Dementia Research' Meeting at the NIHR CRN Thames Valley and South Midlands, Buckinghamshire.

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Year(s) Of Engagement Activity 2015
 
Description IDEAL WISERD Blog Jan 2017 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Blog update on the qualitative arm of the IDEAL study: The IDEAL study: finding strategies to live well with dementia
Year(s) Of Engagement Activity 2017
URL http://blogs.cardiff.ac.uk/wiserd/2017/01/25/ideal-strategies-dementia/
 
Description IDEAL WISERD Newsletter 2016 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact "Illness" Label can Lower Mood WISERD Newsletter June 2016, pg.10
Findings from the IDEAL project: Professor Ian Rees Jones and Professor Linda Clare
Year(s) Of Engagement Activity 2016
 
Description IDEAL WISERD Newsletter 2016 Caregivers 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact 'Better Understanding of Caregivers Perceptions of Dementia' WISERD Newsletter June 2016, pg. 11
Findings from the IDEAL project: Professor Ian Rees Jones, Dr Catherine Quinn and Professor Linda Clare
Year(s) Of Engagement Activity 2016
 
Description IDEAL Well with Dementia NIHR Blog October 2018 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact NIHR highlights the benefits of longitudinal studies like IDEAL and in the blog we hear from study participant Annie Panton about why she takes part in dementia research.
Year(s) Of Engagement Activity 2018
URL https://www.nihr.ac.uk/research-and-impact/making-a-difference/living-well-with-dementia.htm
 
Description IDEAL Western Mail Article 2017 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Media (as a channel to the public)
Results and Impact What it means to live well with dementia - Alex Hillman Western Mail March 2017
Year(s) Of Engagement Activity 2017
 
Description IDEAL Western Morning News Article May 2018 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Press Release 'What it means to live with dementia'
Year(s) Of Engagement Activity 2018
URL http://www.idealproject.org.uk/news/press/
 
Description IDEAL World Alzheimer's Day Berkshire Healthcare NHS press release 2017 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Annie urges the public to learn about NHS dementia research Online and available here: https://www.nihr.ac.uk/news/annie-urges-the-public-to-learn-about-nhs-dementia-research/6905
Twitter here: https://twitter.com/NIHRCRN_tvsm/status/911132728023711746
And the patient was interviewed by ITV News Meridian alongside the research director at Berkshire Healthcare NHS Foundation Trust, which was on the 6pm news yesterday.
Year(s) Of Engagement Activity 2017
URL https://www.nihr.ac.uk/news/annie-urges-the-public-to-learn-about-nhs-dementia-research/6905
 
Description IDEAL llness rep. blog WISERD 2016 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact 'What's in a name? How family carers understand dementia' blog on the WISERD website published online 24/02/2016
Year(s) Of Engagement Activity 2016
URL http://blogs.cardiff.ac.uk/wiserd/2016/02/24/whats-in-a-name-how-family-carers-understand-dementia/
 
Description IDEAL presentation at Alzheimer Europe, The Hague, 24 October 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Quinn, C., Jones, I.R., Martyr, A., Nelis, S.M., Morris, R.G., & Clare, L. on behalf of the IDEAL programme team (2019; Oct.). Caregivers' beliefs about dementia: Findings from the IDEAL study. Presentation at the Alzheimer Europe conference. The Hague, Netherlands.
Year(s) Of Engagement Activity 2019
 
Description IDEAL presentation at INTERDEM 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation on IDEAL at the meeting of INTERDEM (Early detection and timely INTERvention in DEMentia)
Year(s) Of Engagement Activity 2017
URL http://interdem.org/?page_id=4644
 
Description IDEAL programme newsletter, June 2019 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Study participants or study members
Results and Impact Newsletter featured IDEAL progress, projects, publications and findings and activities to engage with, also viewed by Clinical Research network staff.
Year(s) Of Engagement Activity 2019
URL http://www.idealproject.org.uk/media/universityofexeter/schoolofpsychology/ideal/documents/IDEAL_pro...
 
Description IDEAL women in research 2015 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Savitch, N., Abbott, E. and Parker. G. (2015). Dementia: through the eyes of women. Report commissioned by the Joseph Rowntree Foundation.
Section 5: Case study IDEAL research project: thinking differently about women in research studies. pg. 30
Year(s) Of Engagement Activity 2015
URL https://www.jrf.org.uk/report/dementia-through-eyes-women
 
Description IDEAL/;GREAT Festival of Social Science Exeter November 2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Teale, J.C. & Kudlicka, A. (2016, Nov.). Dementia: Life, art and research. Presentation at the Economic and Social Research Council Festival of Social Science at the University of Exeter, UK. An evening at a local arts centre featuring 2 short films centring on dementia, an illustrated talk by cartoonist Tony Husband about his book (Take Care, Son) and a panel discussion with dementia experts.
Year(s) Of Engagement Activity 2016
URL http://www.exeter.ac.uk/news/events/details/index.php?event=5996
 
Description IDEAL/ALMO 'The Chronicles of Oldham' Exhibition, Gallery Oldham 2019 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Ian Beesley (photographer), Tony Husband (cartoonist) and Ian McMillan (poet) have held a series of workshops at Gallery Oldham with a group of people with dementia called the Ragamuffins, along with their partners and volunteers. During the workshops Ian Beesley has been discussing images from the Oldham Chronicle Archive that he has be digitising. The exhibition captures these images and the group's reactions to them, focusing on the importance of photographs (not necessarily personal ones) and pictures to stimulate memories. The launch event gave members of the group an opportunity to see the exhibition for the first time. The exhibition will run from 7 January 2019 until 9 February 2019 in the foyer of Gallery Oldham, giving members of the public an opportunity to view some of the images and poems created by the group.
Year(s) Of Engagement Activity 2019
URL https://www.galleryoldham.org.uk/exhibitions/community-gallery/
 
Description IDEAL/ALMO Blog Public Transport Alzheimer's Society August 2018 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact A blog on the Alzheimer's Society website: Understanding public transport from the perspective of people with dementia linked with 'A Grand Day Out' chapbook of a unique series, which forms part of the A Life More Ordinary Project led by artists Ian Beesley, Ian McMillan and Tony Husband.
Year(s) Of Engagement Activity 2018
URL https://www.alzheimers.org.uk/blog/understanding-public-transport-perspective-people-dementia
 
Description IDEAL/ALMO Dementia Action Week Guildhall May 24st 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact IDEAL/ALMO Dementia Action Week Guildhall May 24th 2018
'A Life More Ordinary' Exhibition
Exeter Guildhall Shopping Centre
People whose lives have been affected by dementia have worked with well-known artists to create insightful images and poems that capture some of their experiences - an exhibit of some of their work.
Year(s) Of Engagement Activity 2018
 
Description IDEAL/ALMO Dementia Action Week UoE May 21st 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact 'A Life More Ordinary' Exhibition
University of Exeter, Forum 21st May
People whose lives have been affected by dementia have worked with well-known artists to create insightful images and
poems that capture some of their experiences - an exhibit of some of their work.
Year(s) Of Engagement Activity 2010,2014,2018
 
Description IDEAL/ALMO Dementia Action Week York 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Artists Ian Beesley, Tony Husband, Ian McMillan and three Yorkshire DEEP (Dementia Engagement & Empowerment Project) groups unfurled two large banners they created together. They highlight the 'right to get out and about' for people with dementia. A brass ensemble from The Minster School, York also participated in the event. The unfurling took place at York train station and provided an opportunity for members of the public to learn more about the project and to talk to people with dementia about the issues they may have accessing transport. The event took place on 23 May 2018 during Dementia Action Week. Local media were also in attendance. Following the event, Ian Beesley has had several requests to display the banner at other venues, for example, at Scarborough Football Club and the People's History Museum in Manchester which holds a large collection of banners.
Year(s) Of Engagement Activity 2018
 
Description IDEAL/ALMO Festival of Social Science Brunel November 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact ESRC Festival of Social Science 2018 - Living well with dementia, 6 November 2018, Brunel University London
The event was held as part of the ESRC's Festival of Social Science. It highlighted two important strands of the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) programme: understanding the factors that can help people with dementia to live well and the role of creative arts in providing new insights into how people with dementia can live well. Prof Christina Victor provided an overview of the IDEAL project and discussed some of our early findings. Then photographer Ian Beesley, one of the artists involved in our creative arts-based `A Life More Ordinary' project, showed some examples of the images and poetry created during the project and discussed the impact it has had on the people with dementia, carers and other supporters who have collaborated with the artists. Feedback from attendees was positive and many found it an interesting and informative event. The 'A Life More Ordinary' project was particularly inspiring.
Year(s) Of Engagement Activity 2018
URL https://www.eventbrite.co.uk/e/living-well-with-dementia-the-ideal-and-a-life-more-ordinary-projects...
 
Description IDEAL/ALMO Newspaper Article Living Well with Dementia Mature Times 2018 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Living well with dementia: how life can still be fun, worthwhile and heading forward - Interview with Ian McMillan from A Life More Ordinary.
Year(s) Of Engagement Activity 2018
URL https://www.maturetimes.co.uk/eileen-caiger-gray-interviews-ian-mcmillan/
 
Description IDEAL/ALMO Workshop Exeter (2018) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Ian Beesley (photographer) held two workshops (August and November 2018) with the Budding Friends group in Exeter. They have been creating a banner on the theme of friendship. Ian will hold a final workshop with the group in February 2019 to get the groups thoughts on the positive side of the banner and to finalise the designs for the second (negative) side of the banner. The group plan to unfurl the banner on the first day of spring (21st March 2019).
Year(s) Of Engagement Activity 2018
 
Description IDEAL/ALMO Workshop Kent (2018) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Ian Beesley (photographer) and Rachael Litherland (Innovations in Dementia) held a workshop in Canterbury, Kent with representatives from the six DEEP groups in the County (the Forget me Knots, Sunshiners, Ashford Phoenix, Memorybilia, the Seasiders and the Pathfinders). Ian described some of the work he has been doing with other groups as part of the 'A Life More Ordinary' project. Everyone agreed it would be good to include other DEEP groups in Kent and to make a Kent wide banner - "It's our chance to change what people think about dementia." This could be unfurled at the Kent DEEP gathering on 20th June 2019 in Canterbury.
Ian Beesley will hold a second workshop in the New Year to get feedback on designs for the positive side of the banner and to discuss ideas for the second side.
Year(s) Of Engagement Activity 2018
 
Description IDEAL/ALMO Workshop Leeds (2019) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Photographer Ian Beesley held an initial workshop with the Hamari Yaadain group to introduce the A Life More Ordinary project. This is a mixed group of carers and people with dementia from South Asian communities in Leeds. Plans were made to meet again and to work on a bilingual chapbook (English and Punjabi) together.
Year(s) Of Engagement Activity 2019
URL https://twitter.com/ripaljeet/status/1085941314070474755
 
Description IDEAL/ALMO Workshop York (2018) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Ian Beesley (photographer) and Ian McMillan (poet) took part in a workshop run as part of the 'Right to Get Out and About' project organised by Innovations in Dementia. It involves three Dementia Engagement & Empowerment Project (DEEP) groups: DEEP Vibes Scarborough, York Minds and Voices and Face it Together (FIT) in Bradford.

Ian Beesley and Ian McMillan discussed the idea of making a banner to highlight the rights of people with dementia and being able to get out and about. The group plan to meet again on 18th April 2018, to make a banner. It will be launched on 23rd May during Dementia Awareness Week in a public space in York.

Wendy Mitchell, who is a member of the Minds & Voices group in York, wrote a piece about this event in her blog.
Year(s) Of Engagement Activity 2018
 
Description IDEAL/ALMO York Banner Blog Mitchell May 2018 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Blog by Wendy Mitchell, a person living with dementia, on here experience with the Unfurling of the Great Yorkshire Banners as part 'A Life More Ordinary' KE project.
Year(s) Of Engagement Activity 2018
URL https://whichmeamitoday.wordpress.com/2018/05/24/unfurling-of-the-great-yorkshire-banners/
 
Description IDEAL/GREAT RICE Newsletter 41 2016 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Jones, R. (2016). Improving the experience of dementia and enhancing active life: living with dementia - the IDEAL study. RICE Newsletter, Spring, 41, p. 6.
Year(s) Of Engagement Activity 2016
URL http://www.rice.org.uk/files/PDF/Newsletters/NL41%20Layout%20A4%20Booklet%20Final.pdf
 
Description IFA Global Summit Copenhagen, Panel discussion chair L. Clare 'Shaping the Agenda: Seizing Opportunity and Driving Change' 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Next steps for global action towards public health policies that promote cognitive reserve were discussed. Experts from different industries highlighted specific next steps that will help shift the conversation around cognitive decline to that of promoting cognitive reserve across the life course. Gaps in current research/ understanding were reviewed, illustrating what evidence is still required to influence policy will also be discussed by panelists. Panelists discussed their opinion and knowledge, followed by a moderated discussion.
Year(s) Of Engagement Activity 2019
URL https://www.ifa-copenhagen-summit.com/wp-content/uploads/2019/06/Full-Copenhagen-Summit-Program-for-...
 
Description Infographic showing evidence from IDEAL - 'Living well' with Dementia 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Infograpgic created by University of Exeter for IDEAL for accessible information about findings from IDEAl held on University of Exeter Website and IDEAL website
Year(s) Of Engagement Activity 2019
URL http://www.idealproject.org.uk/activities/info/
 
Description Infurling of A life More Ordinary (ALMO) banners article, online 'Saddleworth Life' newsletter, 22 July 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Weekly online 'Saddleworth Life' newsletter describing the process of designing and creating the Ragartmuffin banner
Year(s) Of Engagement Activity 2019
URL https://www.saddleworthlife.com/the-dementia-banners/
 
Description Launch of 'From the Negative to the Positive' Chapbook and Exhibition at Gallery Oldham 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact The 'A Life More Ordinary' project, linked to IDEAL launched the second in a series of chapbooks entitled 'From the Negative to the Positive'. Ian Beesley (photographer), Tony Husband (cartoonist) and Ian McMillan (poet) held a series of workshops at Gallery Oldham with a group of people with dementia called the Ragamuffins, along with their partners and volunteers. The chapbook and accompanying exhibition present some of the images and poems produced during these workshops. The launch event gave members of the group an opportunity to see the chapbook and exhibition for the first time.

The exhibition will run from 8 January 2018 until 2 February 2018 in the foyer of Gallery Oldham, giving members of the public an opportunity to view some of the images and poems created by the group.

Feedback received from the group was very positive. Many commented on the social connections the workshops had created and how it helped them to think differently about living with dementia. At the event the artists announced that Gallery Oldham would fund the workshops for another year. The group will also invite new members to join.
Year(s) Of Engagement Activity 2017
URL http://www.idealproject.org.uk/almo/events/
 
Description Launch of exhibition of banners and artwork from the A Life More Ordinary project held at the People's History Museum Manchester, 16 December 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Exhibition of a selection of banners and artwork from the A Life More Ordinary (ALMO) project - to raise awareness of Dementia and the challenges and pleasures people with Dementia experience.
Year(s) Of Engagement Activity 2019
URL http://www.theunfurlings.org.uk
 
Description Martyr (2015) Institute of Mental Health, Nottingham 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Martyr, A. (2015, May). Centre for Research in Ageing and Cognitive Health. Presentation at the academic centres for psychosocial research in dementia, The Institute of Mental Health, University of Nottingham.

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Year(s) Of Engagement Activity 2015
 
Description Martyr AAIC Poster 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Martyr, A. Nelis, S.M., Quinn, C., Wu, Y.-T., Lamont, R., Henderson, C., Clarke, R., Hindle, J., Jones, I.R., Morris, R.G., Rusted, J.M., Thom, J.M., Victor, C.R. & Clare, L., (2017, July). Living well with dementia: a systematic review and meta-analysis. Poster presentation at the Alzheimer's Association International Conference, London.
Year(s) Of Engagement Activity 2017
URL http://aanddjournal.net/article/S1552-5260(17)33641-5/fulltext
 
Description National Assembly for Wales - briefing 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Asked to provide a further briefing session following analysis of IDEAL data
Year(s) Of Engagement Activity 2017
URL https://wiserd.ac.uk/news/wiserd-gives-briefing-ideal-study-national-assembly-wales
 
Description Online article on the homecare.co.uk website about the banners produced by A Life More prdinary (ALMO) project, 28 May 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Article 'Dementia friends make political banners to show they want 'a life more ordinary' on a national website reviewing the quality of care homes
Year(s) Of Engagement Activity 2019
URL https://www.homecare.co.uk/news/article.cfm/id/1610213/dementia-friends-make-political-banners-to-sh...
 
Description Opening of the exhibition "Chronicle" Gallery Oldham, 6 Janurary 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Opening of the exhibition "Chronicle" Gallery Oldham
Year(s) Of Engagement Activity 2019
 
Description Parliamentary Group for Social Science and Policy 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact information on IDEAL was given to the APPG Briefing by the ESRC
Year(s) Of Engagement Activity 2017
 
Description Penrith exhibition of dementia awareness banners, Penrith Arts Festival, 29 August - 01 September 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Exhibition of dementia awareness banners throughout the town as part of Penrith Arts Festival, follow the trail map to collect postcards at each venue. Local press coverage - art gallery to be used ongoing for different community groups; 5 banners in 5 different locations.
Year(s) Of Engagement Activity 2019
 
Description Presentation 'Psychosocial barriers to seeking a dementia diagnosis' - IDEAL findings at the Alzheimer's Society Cymru Conference, Cardiff March 6th 2019. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Approximately 200 people attended the conference. The presentation was also publicised through Twitter, comments were retweeted 11 times and received around 30 likes, further increasing awareness of the programme and findings.
Increased awareness of the IDEAL study and the findings to date among those who can potentially make use of them to inform decision making.
Year(s) Of Engagement Activity 2019
 
Description Presentation Living well with dementia: The IDEAL programme, C Quinn, 10 October 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presentation about the IDEAL programme as part of an opening event for the Wolfson Centre of Apllied Health Research in Bradford.
Year(s) Of Engagement Activity 2019
 
Description Presentation Victor, C., Rippon, I. & Clare, L. at the UK Research and Innovation (UKRI) Loneliness and Social Isolation in Mental Health Research Network Symposium, London. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Presentation 'Does loneliness and isolation influence the wellbeing of carers of people with dementia: a dyadic analysis'
Year(s) Of Engagement Activity 2020
URL https://mailchi.mp/aca95fe0d61a/loneliness-social-isolation-in-mental-health-research-network-newsle...
 
Description Presentation by R. Litherland, IDEAL co-investigator at the Faculty of the Psychology of Older People (FPOP) National Conference 'Beyond the stereotypes of ageing: Tales of the unexpected', Southport. 1-2 July 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Litherland, R. (2019; July). Co-production work of IDEAL-2. Presentation at the Faculty of the Psychology of Older People (FPOP) National Conference 'Beyond the stereotypes of ageing: Tales of the unexpected', Southport.
Year(s) Of Engagement Activity 2019
 
Description Presentation to Admiral Nurses Forum, University of Warwick by L. Clare, 11-12 September 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Keynote at the Admiral Nurses Form - general topic: What works well in Dementia'
Year(s) Of Engagement Activity 2019
 
Description Presentations of IDEAL papers at the British Society of Gerontology Annual Conference, 10-12 July, Liverpool 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Three IDEAL presentations with questions from the audience and discussion
Quinn, C., Nelis, S.M., Martyr, A., Victor, C., Morris, R., & Clare, L. (2019; July). Influence of positive and negative dimensions of dementia caregiving on caregiver wellbeing and satisfaction with life: findings from the IDEAL study.

Rippon, I., & Victor, C. (2019; July). The impact of relationship quality on loneliness in carers of people with dementia: findings from the IDEAL programme.

van den Heuvel, E. & Victor, C. (2019; July). Living well with Memory problems for Black and South Asian communities in the UK.
Year(s) Of Engagement Activity 2019
 
Description Press atricle, L Clare quoted in Guardian article, 29 June 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Linda Clare quoted in Guardian article: 'Save your money': no evidence brain health supplements work, say experts (GCBH supplements)
Year(s) Of Engagement Activity 2019
URL https://www.theguardian.com/science/2019/jun/29/save-your-money-no-evidence-brain-health-supplements...
 
Description Radio Devon IDEAL-2 Launch 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Media (as a channel to the public)
Results and Impact David FitzGerald BBC Radio Devon 20th June 2017 - 10.00 - 13.00
Latest listening figures for BBC Devon are 208,000 per week
Year(s) Of Engagement Activity 2017
 
Description Remember that Song - Dementia Singing Group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentation to a group of volunteers and dementia carers from Remember that Song - Dementia Singing Group. Talk generated discussion on research in dementia and how researchers disseminate their findings. The group leader reported back to me that the group are interested in using observational techniques to allow for closer observation of changes in members' behaviour during music sessions.
Year(s) Of Engagement Activity 2017
URL http://www.rememberthatsong.org.uk/index.php/volunteers-activities
 
Description Rotman Research Conference, Toronto, Canada, March 2020: Living well with dementia: well-being among people with dementia and family carers. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact An invited presentation: Clare, L. (2020). Living well with dementia: well-being among people with dementia and family carers. Rotman Research Conference, March, Toronto.
Year(s) Of Engagement Activity 2020
 
Description St Petersberg visit to meet leading Russian Dementia researchers by Chief Investigator Linda Clare 18 May 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Visited academic colleagues in St Petersburg for purposes of knowledge exchange, and met with Sasha Shishkina, co-president of AlzRus. Presentation of information about dementia care and about IDEAL at a multidiscipllinary meeting.
Year(s) Of Engagement Activity 2019
 
Description Talk Centre for Research Excellence in Cognitive Health research day at the Australian National University, Canberra 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Results - shared information. Discussed plans for future activity.
Year(s) Of Engagement Activity 2017
 
Description The IDEAL Study International Workshop, 26-28 Feburary 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Delegates from Brazil, Canada, Germany, Ireland, Japan, Lebanon, New Zealand, Taiwan and the USA met to share information, discuss possible collaborations and consider the possibilities for parallel or comparative studies
Year(s) Of Engagement Activity 2019
 
Description Tinted Lens: A Festival of the Mind, Memory and Ageing 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact A wider awareness of the IDEAL study for people living with dementia, their relatives/informal carers as well as others involved in caring for people with dementia.
Year(s) Of Engagement Activity 2017
URL https://www.chapter.org/season/dementia-awareness-day-2017
 
Description UK Dementia Congress Brighton 2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshop 'What does living well with dementia mean? Learning from people with dementia and carers through the IDEAL study' held at the 2016 UK Dementia Congress.
6 people with dementia and two of their partners presented a workshop, sharing their personal experiences of living with the dementia to an audience of 40 people. This was a positive experience for these individuals. One presenter emailed afterwards to say "It was a privilege to be asked to attend the Conference and to be able to say a few words.It really was an 'eye opener' to hear so many people speak and to hear the work that is going on.".
The audience also provided only positive feedback e.g. "Found it very stirring and thought provoking. Nice balance of theoretical underpinning and lived experience."; "Amazing! Very good speakers who gave a really useful insight into their lives."
The session enabled people to reflect on their work practices:
Feedback from attendee- "Great, as ever, to hear the real experiences- all of these reflect back on my work"
It increased public understanding of the lived experiences of people with dementia and the potential to live positively with it:
Year(s) Of Engagement Activity 2016
URL http://www.careinfo.org/wp-content/uploads/2016/01/2016UKDC12pp_v2sb-lo-res6.pdf
 
Description University of Exeter Press Release 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact The University of Exeter Medical School issued a press release to accompany the unfurling of the Budding Friends banner, undertaken with artist Ian Beesley.
Year(s) Of Engagement Activity 2019
URL http://www.exeter.ac.uk/dementia/news/articles/artistcollaborationcreate.html#ZtLAgbwQVs6lRsEh.99
 
Description University of Exeter news on website - Research shows carers' experience can influence how well a person lives with dementia, 20 May 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Article based on paper published in the journal Aging and Mental Health, C Quinn featuring a summary of evidence and quotes from researchers, also posted on @IDEALStudyTweet paper
Year(s) Of Engagement Activity 2019
URL https://www.exeter.ac.uk/news/featurednews/title_716891_en.html
 
Description West Yorkshire R&D Research Event, C Quinn "Delivering a High Quality Service in Dementia Care Research Event" Leeds, 8 May 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact C Quinn presenting "Living well with dementia: The IDEAL programme" to inform local healthcare professionals about the research being undertaken in the area.
Year(s) Of Engagement Activity 2019
 
Description Workshop - Kent Groups 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshops eliciting the views and experiences of a group of people with dementia in Kent for the A Life More Ordinary (ALMO) project.
Year(s) Of Engagement Activity 2019
 
Description Workshop - Young Dementia Leeds 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshops eliciting the views and experiences of a group of people (under 65's) with dementia in Leeds for the A Life More Ordinary (ALMO) project.
Year(s) Of Engagement Activity 2019
URL https://www.commlinks.co.uk/?service=young-dementia-leeds
 
Description Workshop A Life More Ordinary (ALMO) Bradford Group, 05 June 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshops eliciting the views and experiences of a group of people with dementia in Bradford for the A Life More Ordinary (ALMO) project
Year(s) Of Engagement Activity 2019
 
Description Workshop A Life More Ordinary (ALMO) Kirklees Group, 05 June 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshops eliciting the views and experiences of a group of people with dementia in Kirklees, West Yorkshire for the A Life More Ordinary (ALMO) project
Year(s) Of Engagement Activity 2019
 
Description Workshop A Life More Ordinary (ALMO) Raggamuffin group, October 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshops eliciting the views and experiences of a group of people with dementia for the A Life More Ordinary (ALMO) project, work with Ian Beesley to continue, funded by Gallery Oldham following the success of the banner making workshops
Year(s) Of Engagement Activity 2019
 
Description Workshop A Life More Ordinary (ALMO) Touchstones Leeds, 17 Janurary 2019 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshop Touchstones Leeds
Year(s) Of Engagement Activity 2019
URL https://www.touchstonesupport.org.uk/about-us/news/
 
Description Workshop Kirklees Group 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshops eliciting the views and experiences of a group of people with dementia in Kirklees, West Yorkshire for the A Life More Ordinary (ALMO) project
Year(s) Of Engagement Activity 2019
 
Description Workshop about A lIfe More Ordianary (ALMO) with Springboard group at Gallery Oldham 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshop with Springboard group at Gallery Oldham
Year(s) Of Engagement Activity 2019
 
Description Workshop and presentation at Dementia Action Alliance Conference, N Hart, R.Litherland, K. Oliver, 6 Feburary 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Conference attended by Racheal Litherland and Nicola Hart presentation given by IDEAL ALWAYS (PPI) member Keith Oliver - Living with young onset dementia, also Workshop: How research is informing practical solutions to improve the lives of people living with dementia and carers, IDEAL study (Nicola Hart and Keith Oliver)
Year(s) Of Engagement Activity 2019
 
Description Workshop by IDEAL co-investigator at conference : The Wellbeing of Caregivers of People with Dementia Considered from a Neuropsychological Perspective at The International Neuropsychological Society, New York 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Workshop entitled: The Wellbeing of Caregivers of People with Dementia Considered from a Neuropsychological Perspective presented by R. Morris, IDEAL Co-Investigator at The International Neuropsychological Society 47th Annual Meeting New York City, New York, USA
Year(s) Of Engagement Activity 2019
URL https://www.the-ins.org/files/meetings/ny2019/program_book/NY2019_Program_Book.pdf
 
Description Workshop series A Life More Ordinary (ALMO) Touchstones, Leeds, 17 Janurary, 21 Feburary, 21 March, 18 April, 16 May 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshops eliciting the views and experiences of a group of people with dementia for the A Life More Ordinary (ALMO) project, Touchstone Leeds
Year(s) Of Engagement Activity 2019
URL https://www.touchstonesupport.org.uk/about-us/news/
 
Description Workshop with Springboard Group at Gallery Oldham 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshops eliciting the views and experiences of a group of people with dementia in Oldham for the A Life More Ordinary (ALMO) project.
Year(s) Of Engagement Activity 2019
 
Description Workshop with the Bradford Group 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshops eliciting the views and experiences of a group of people with dementia in Bradford for the A Life More Ordinary (ALMO) project.
Year(s) Of Engagement Activity 2019
 
Description Workshop, A Life More Ordinary (ALMO) Budding Friends, Exeter, 04 Feburary 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Ian Beesley (photographer) held teh final workshop with the Budding Friends group in Exeter. They have been creating a banner on the theme of friendship. Ian gathered thoughts on the positive side of the banner and to finalise the designs for the second (negative) side of the banner in anticipation of teh unfurling on the first day of spring (21st March 2019).
Year(s) Of Engagement Activity 2019
URL https://www.ageuk.org.uk/exeter/our-services/dementia-care/
 
Description Workshops A Life More Oerdinary (ALMO) Young Dementia, Leeds, 1 Feburary 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshops Young Dementia Leeds
Year(s) Of Engagement Activity 2019
URL https://www.commlinks.co.uk/?service=young-dementia-leeds
 
Description Workshops A Life More Ordinary (ALMO) Young Dementia Leeds, 01 and 22 Feburary, 22 March, 3 May 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshops eliciting the views and experiences of a group of people with dementia in Oldham for the A Life More Ordinary (ALMO) project
Year(s) Of Engagement Activity 2019
URL https://www.commlinks.co.uk/?service=young-dementia-leeds
 
Description Workshops with Springboard DEEP group, A Life More Ordinary (ALMO) at Gallery Oldham, 13 May, 17 June 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshops eliciting the views and experiences of the Oldham dementia carers group for the A Life More Ordinary (ALMO) project
Year(s) Of Engagement Activity 2019
 
Description World Alzheimer's Day 2017 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact World Alzheimer's Day 2017 - ITV News Coverage
Year(s) Of Engagement Activity 2017
 
Description Yorkshire DEEP (The UK Network of Dementia Voices) A Life More Ordinary (ALMO) meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Ian Beesley provided an update on the ALMO project and showed the group the banners that have been created by other groups. This gave people an opportunity to reflect on the impact of their banner and the 'right to get out and about' campaign.
Year(s) Of Engagement Activity 2019
 
Description poster presentation ICTMC conference, Nworth Clinical Trials Unit, IDEAL, Managing the Paper Mountain: Systems and Processes for Tracing, Managing and Transforming High Volume Trial Data from Paper Sources, 6-9 October 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Poster presentation by NWORTH (CTU Bangor) at the 5th International Clinical Trials Methodology Conference 2019, Brighton. Poster was also promoted at the Rapid Abstract session. Conference team have asked if poster could be made publically available.
Poster citation: Rusiak, K., Woodrow, I., Flynn, G., Skelhorn, D., Ryan, J., Nelis, S.M., & Clare, L. (2019, October). Managing the Paper Mountain: Systems and Processes for Tracing, Managing and Transforming High Volume Trial Data from Paper Sources. Poster session presented at the 5th International Clinical Trials Methodology Conference, Brighton
Year(s) Of Engagement Activity 2019
URL https://ictmc2019.com/