Improving the experience of dementia and enhancing active life: living well with dementia The IDEAL study Dr Catherine Quinn Senior Research Fellow Centre for Research in Ageing and Cognitive Health University of Exeter

What is the IDEAL study about? As we get older we can experience various changes in memory, other thinking abilities, or the ability to manage day-to-day activities which can affect our well-being and quality of life. It is very important for people to be able to maintain well-being and to live well as things change in later life. Enabling people living with dementia and their family members to live well with dementia is a key UK policy objective, but we need to know more about what can help people to live well. In this 5 year large-scale study we aim to explore factors that influence the possibility of living well with dementia and to identify changes that could result in improved well-being and quality of life.

Aims To identify changes that could result in improved well-being, life satisfaction and quality of life for people with dementia and carers. To provide information about the way in which well-being, life satisfaction and quality of life are affected by assets and resources (e.g. social networks, neighbourhood, income etc.). To find out about the challenges posed by dementia, and the ways in which people adjust to and cope with these challenges.

Who is carrying out the study? The study is led by researchers at the University of Exeter and is supported by a number of NHS clinical research networks. How is the study funded? The study is funded by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). The Alzheimer’s Society and Innovations in Dementia CIC are project partners.

The IDEAL study started in January Over the first two years we will recruit up to 1500 people living with dementia. We will also speak to a key family member or close friend wherever possible. This helps us to gain a more comprehensive view of what it is like to experience these changes, what helps people to live with these changes, and what needs to be done to improve things. Who will take part?

What does taking part involve? Local NHS staff will visit people who agree to take part. We will visit people in their own homes on 3 occasions at the start of the study. Visits are expected to last no more than 2 hours each. During these visits people will be asked to provide some background information and to complete some questionnaires. For instance: questions on quality of life, well-being, life satisfaction, service use. We will make return visits to those taking part after 12 and 24 months (2 visits at each of these follow-ups). Some people who take part will also be interviewed about their experiences to help enrich the other information we collect.

Study time-line October 2015 Milestone Target date Time 1 Recruitment and assessment commences 1 st July 2014 Time 1 Recruitment and assessment completed 30 th June 2016 Time 2 Follow up assessment commences 1 st July 2015 Time 2 Follow up assessment completed 30 th June 2017 Time 3 Follow up assessment commences 1 st July 2016 T3 Follow up assessment completed 30 th September 2018

Where is it taking place? Recruitment and data collection by NHS research networks in 29 sites in England, Scotland and Wales. Including: Royal Devon & Exeter NHS Foundation Trust Cornwall Partnership NHS Foundation Trust 2gether NHS Foundation Trust The Research Institute for the Care of Older People (RICE), Bath Isle of Wight NHS Trust

2014 Year Year Year Year Year 5 T1 Data collection T2 Data collection T2 Qualitative interviews T3 Data collection T3 Qualitative interviews Cross-sectional analyses and findings Longitudinal analyses and findings IDEAL Timelines

People with dementia: 961 of 1,500 = 64% Carers: 828 of 1,050 (estimated) = 79% Total 1789 of 2,550 = 70%

N= 961 Recruited Prevalence Estimates Data from Dementia UK Women42%66.5% Men58%33.5% Age: Early onset (< 65) 12%2.2% Alzheimer’s Society Living Alone: 19%33% Relationship to family member/friend: Demcare study Spouse 82%63% Adult Child 16% 30% Other 3%7% Sample

Diagnostic Types N= 961 Recruited Prevalence Estimates Data from Dementia UK Alzheimer’s Disease 57% 62% Vascular Dementia 10% 17% Mixed Dementia 18% 14% Fronto-temporal Dementia 3% 2% Parkinson's Disease Dementia 2%2% Dementia with Lewy Bodies 3% 4% Other Dementia 6% 3%

Patient and Public Involvement Involvement of people living with dementia and family members has been central from the time the project was first conceived. In collaboration with the Alzheimer’s Society and Innovations in Dementia the ALWAYS group (Action on Living Well: Asking You) consisting of people with dementia and carers has been set up to provide advice to the project team. IDEAL has an Advisory Group that meets every 6 months, chaired by Dr Nori Graham.

Study Developments Two linked PhD studentships – Social class and living well with dementia (Cardiff University). – Sustaining well-being in carers who remain in the workforce (University of Sussex). A Life More Ordinary: Arts-based project – This project will include workshops, touring exhibitions and development of an archive of royalty-free images. HQLC Dementia Carers Instrument Development: DECIDE – Aim is to develop a new reliable and valid measure of the quality of life of carers of people with dementia.

Further information about the study

Acknowledgements Project team Linda Clare (CI), University of Exeter Sharon Nelis (Project manager), University of Exeter Helen Collins, DeNDRoN John Hindle, Bangor University Ian Rees Jones, Cardiff University Roy Jones, RICE Centre, Bath Martin Knapp, London School of Economics Michael Kopelman, King’s College London James Pickett, Alzheimer’s Society Ruth Lamont, University of Exeter Anthony Martyr, University of Exeter Fiona Mathews, University of Cambridge Robin Morris, King’s College London Jennifer Rusted, Sussex University Nada Savitch, Innovations in Dementia Jeanette Thom, University New South Wales Christina Victor, Brunel University Yu-Tzu Wu, University of Exeter We would like to thank all the researchers involved in participant identification and data collection. Cornwall site: Allison O'Kelly (Local PI) Emma O'Shaughnessy Jackie Kerr Joanna Ledger Sara Clayton Sharon Hudson Vanessa Shawcross We would also like to thank all the people who are taking part in the study.