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

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Hillman A (2017) Cultural representations of dementia. in PLoS medicine

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Jones IR (2017) Social class, dementia and the fourth age. in Sociology of health & illness

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Lamont RA (2017) Social Support and Attitudes to Aging in Later Life. in International journal of aging & human development

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Martyr A (2018) Awareness of functional ability in people with early-stage dementia. in International journal of geriatric psychiatry

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Morgan J (2017) Living well with dementia in The Lancet Neurology

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Quinn C (2017) Illness representations in caregivers of people with dementia. in Aging & mental health

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 31/12/2018 £3,537,698
 
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 of Great Britain & Northern Ireland (UK)
Start 07/2015 
End 12/2018
 
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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 RICE 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 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 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 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 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 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 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 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