Living well with dementia

Lead Research Organisation: Bangor University
Department Name: Sch of 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.

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 Methodology Research Panel
Amount £571,127 (GBP)
Funding ID MR/M025179/1 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 01/2015 
End 06/2018
 
Description Birrell Lecture, Edinburgh, 2014 
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. (2014). Awareness, self-concept and the experience of dementia: foundations of a psychologically-minded approach to care and support. Birrell Lecture, School of Psychology, Edinburgh University. February.

Dissemination to other professionals and academics about the study.
Year(s) Of Engagement Activity 2014
 
Description GREAT/IDEAL Memory in the Diseased Brain Vatican City Jan 2015 (Kopelman) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Supporters
Results and Impact The gathering of international memory experts was held under the auspices of the Pontifical Academy of Sciences and was focused on examining what occurs when memory fails as part of aging and in severe psychiatric disorders. The GREAT and IDEAL studies were acknowledged in the talk by Professor Mike Kopelman.

Kopelman, M. (2015). The clinical neuropsychiatry of memory disorders. International Conference 'Memory in the Diseased Brain', The Pontifical Academy of Sciences, Vatican City, January.
Year(s) Of Engagement Activity 2015
 
Description IDEAL Brain Awareness Presentation 2014 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Victor, C. (2014, Mar.). Dementia and Ageing. Presentation at the Brain Awareness Week, Brunel University, London.

Raised awareness of dementia related issues and research
Year(s) Of Engagement Activity 2014
 
Description IDEAL British Geriatrics Society 2014 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Hindle, J.V. (2014, Mar.). An Old Dog Learning New Tricks. Presentation at the Welsh branch of the British Geriatrics Society, Llandrindod Wells.


Inform practitioners about the study with a view to helping with study recruitment.
Year(s) Of Engagement Activity 2014
 
Description IDEAL Division of Neuropsychology Newsletter 2014 
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 Morris, R. G. (2014). The IDEAL project: Improving our understanding of dementia. The British Psychological Society, Division of Neuropsychology Newsletter, 13.3, p.5.

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Year(s) Of Engagement Activity 2014
 
Description IDEAL FPOP 2014 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Clare, L., Nelis, S.M. (2014, June). Improving the experience of dementia and enhancing active life: living well with dementia. Presentation at the Faculty for the Psychology of Older People (FPOP) of the British Psychological Society Conference, Shrewsbury

Informed NHS Trusts employees of the IDEAL study and activity that may take place in their Trust.
Year(s) Of Engagement Activity 2014
 
Description IDEAL Hindle (2015) NEURODEM Cymru North Wales Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Hindle, J.V. (2015, Feb.). Research in non-pharmacological interventions in Parkinson's disease. Presentation at the NEURODEM Cymru North Wales Conference, Bangor University.

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Year(s) Of Engagement Activity 2015
 
Description IDEAL Hindle Advisory Group Wales 2014 
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 Hindle, J.V. (2014, Mar.). IDEAL was discussed at the National Specialist Advisory Group for Older People in Wales which advises the Welsh Government. The advisory group was made up of national Welsh multidisciplinary representatives of Health, Social Services and the Welsh Government.
Year(s) Of Engagement Activity 2014
 
Description IDEAL Hindle BGS Meeting 2014 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Hindle, J.V. (2014, April). IDEAL was discussed at the clinical quality steering group of the British Geriatrics Society (BGS). The meeting included 12 senior geriatricians from all over the UK and executive members of the British Geriatrics Society.
Year(s) Of Engagement Activity 2014
 
Description IDEAL Hindle BGS Newsletter 2014 
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 Hindle, J.V. (2014). The IDEAL Project - Improving the experience of dementia and enhancing active life: living well with dementia. British Geriatrics Society Newsletter, November 2014
Year(s) Of Engagement Activity 2014
URL http://www.bgs.org.uk/index.php/resources-6/newsletter/2014-nov-catlist/3413-nov14-ideal-project
 
Description IDEAL Involving Older Adults in Research, Wales 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Study participants or study members
Results and Impact Watkins, C. (2015, Jan.). Improving the experience of dementia and enhancing active life: the IDEAL study. Presentation at the Involving Older Adults in Research Awareness Workshop, The Wales Dementias and Neurodegenerative Diseases Registered Research Group, Wrexham.

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Year(s) Of Engagement Activity 2015
 
Description IDEAL JDR Website 2014 
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 Weblink on JDR website 2014
'Join dementia research now has 1,000 volunteers
Year(s) Of Engagement Activity 2014
URL http://news.joindementiaresearch.nihr.ac.uk/1000-registrations/
 
Description IDEAL JDR Website Dec 2014 
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 Join Dementia Research website 10/12/2014 - includes link to the IDEAL project website
#24DaysOfDementiaResearch - The 'IDEAL' Study
Year(s) Of Engagement Activity 2014
URL http://news.joindementiaresearch.nihr.ac.uk/24daysofdementiaresearch-ideal-study-join-dementia-resea...
 
Description IDEAL Morris BNS website 2014 
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 Morris, R. G. (2014). The IDEAL project: Improving our understanding of dementia. Posted on the British Neuropsychological Society Website November 6th 2014 http://www.the-bns.org/other.html
Year(s) Of Engagement Activity 2014
URL http://www.the-bns.org/other.html
 
Description IDEAL NEURODEM Cymru Newsletter 2014 
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 Improving the Experience of Dementia and Enhancing Active Life: The Ideal Study (2014). NEURODEM Cymru Research Participant Register (Rpr) Newsletter, Vol. 1. Issue 5. p.5

Requests fo information on participation
Year(s) Of Engagement Activity 2014
URL http://www.neurodemcymru.org/documents/Issue5RPRnewsletter_Dec2014_Eng.pdf
 
Description IDEAL NIHR website 2014 
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 Weblink on the NIHR website Posted 04/11/2014
'Join dementia research' brings about rapid study recruitment
Year(s) Of Engagement Activity 2014
URL http://www.crn.nihr.ac.uk/news/join-dementia-research-brings-about-rapid-study-recruitment/?h=6
 
Description IDEAL NISCHR Peer Review Meeting 2014 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Hindle, J.V. (2014, Mar.). An Old Dog Learning New Tricks. Presentation at the NISCHR Peer Review Meeting, Llandrindod Wells.

Inform local research network about the IDEAL study
Year(s) Of Engagement Activity 2014
 
Description IDEAL National Eisteddfod of Wales 2014 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Jones, I.R. (2014, Aug.). Living with Dementia: Social and psychological factors (IDEAL). Presentation at the National Eisteddfod of Wales, Carmarthenshire.

Raised awareness of dementia research in Wales - presented in Welsh
Year(s) Of Engagement Activity 2014
 
Description IDEAL Neuroskill Meeting Nov. 14 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact The talk highlighted that the study was happening and gave a summary of what taking part in the study involved

Research participants and patient groups learnt about the study
Year(s) Of Engagement Activity 2014
 
Description IDEAL Newsletter 1 Feb 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 The first 'Living Well and Enhancing Active Life: The IDEAL study' newsletter was distributed in February 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 OPAN Cymru Presentation Feb 2014 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Jones, I.R. (2014, Feb.). Improving the experience of dementia and enhancing active life: living well with dementia: the IDEAL study. Presentation at the Older People Development Network (OPAN Cymru) seminar, Swansea.

Requests for info on the study
Year(s) Of Engagement Activity 2014
 
Description IDEAL Press Release Bath 2013 
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 'Bath dementia charity RICE in £4 million fight against illness'
Bath Chronicle, December 11th 2013

Visits to RICE website and generated interest in dementia research
Year(s) Of Engagement Activity 2013
 
Description IDEAL Press Release Daily Post 2013 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact £4 million for dementia research project
Daily Post, December 12th 2013


Raised awareness of the project in local recruitment area
Year(s) Of Engagement Activity 2014
 
Description IDEAL RICE Newsletter 2014 
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 Jones, R. (2014). Improving the experience of dementia and enhancing active life: living with dementia - the IDEAL study. RICE Newsletter, Autumn, 38, p. 2.

Reponse to participation in the study
Year(s) Of Engagement Activity 2014
 
Description IDEAL Sussex Research Day 2014 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation poster presentation
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Rusted. J. (2014, June). Improving the experience of dementia and enhancing active life: living well with dementia. Poster at Sussex Partnership Trust Annual Research Day, Sussex University.

Informed local Trust employees about the IDEAL study
Year(s) Of Engagement Activity 2014
 
Description Martyr Presentation AAIC 2014 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation poster presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Martyr, A. Clare, L. (2014, July). Awareness of functional ability in people with dementia: diagnostic accuracy and clinical implications. Poster presentation at the Alzheimer's Association International Conference, Copenhagen, Denmark.

Increased hits on project website
Year(s) Of Engagement Activity 2014
 
Description Neurodem Research Participant Register (RPR) Newsletter, 1(5) 
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 Projects were advertised and findings were disseminated.

N/A
Year(s) Of Engagement Activity 2014