Improving the experience of dementia and enhancing active life 2014-2018

Clare, Linda and Martyr, Anthony (2020). Improving the experience of dementia and enhancing active life 2014-2018. [Data Collection]. Colchester, Essex: UK Data Service. 10.5255/UKDA-SN-854293

Living well with dementia, whether as a person with dementia or primary (usually family) carer, can be understood as optimising satisfaction with life, reaching one’s potential for well-being, and experiencing the best possible quality of life (QoL). Enabling people with dementia (PwD) and carers to live well with dementia is a key UK policy objective, but policy recommendations do not tell us how this can be achieved. The IDEAL programme, led by the Centre for Research in Ageing and Cognitive Health (REACH) at the University of Exeter, aims to understand what ‘living well’ means from the perspective of people with dementia and carers and how this changes over time, and to identify how best to enable people with dementia and carers to live well. The first phase of IDEAL, funded by ESRC and NIHR, was conducted between 2014 and 2019, and focused on a longitudinal cohort study in which people with mild-to-moderate dementia were recruited, where possible with an accompanying carer, from memory services in 29 NHS sites throughout Great Britain and through the online Join Dementia Research portal. Participants were assessed at three yearly intervals (Waves 1, 2 and 3) by clinical research network staff. At Wave 1, the cohort comprised 1547 people with dementia and 1283 carers. At Wave 2, 1190 people with dementia and 992 carers remained in the study, and at Wave 3 856 people with dementia and 760 carers contributed. Participants were interviewed in their own homes and completed measures reflecting their ability to live well (quality of life, satisfaction with life, and well-being), and a range of social, psychological, physical, environmental and economic factors potentially associated with ability to live well. Carers, where available, provided information about both the person with dementia and their own experiences. Completed surveys were returned to the North Wales Organisation for Randomised Trials in Health (NWORTH) for data entry and dataset production. From the main cohort a smaller group of 20 people with dementia whose ability to live well improved or declined over the first year of the study was identified, and these individuals and their carers were interviewed in more depth in years 2 and 3. Involvement of people with dementia and carers was integral to developing and conducting the IDEAL programme and ensuring its relevance. The ongoing second phase of IDEAL, funded as an Alzheimer’s Society Centre of Excellence, involves continued follow up of the cohort participants alongside additional work focused on inclusion of ‘seldom heard’ groups.

Data description (abstract)

The IDEAL programme is a longitudinal cohort study of people with dementia (PwD) and primary carers (Carers) across Great Britain, led by the Centre for Research in Ageing and Cognitive Health (REACH) at the University of Exeter. The data in this archive relate to the first part of the programme (Waves 1 to 3), which took place between March 2014 and December 2019. The aim of the IDEAL programme is to 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, and to understand what ‘living well’ means from the perspective of PwD and Carers. IDEAL conceptualised living well as including satisfaction with life, psychological well-being, and quality of life. The research questions that were central to the development of the programme are as follows: 1. How do capitals, assets and resources, and adaptation in response to dementia-related and other challenges, influence the ability to live well for PwD and Carers, and what are the reciprocal influences between PwD and Carers factors? 2. How do changes over time in capitals, assets and resources, dementia-related and other challenges, and adaptation affect evaluations of living well for PwD and Carers? 3. What do PwD and Carers believe helps or hinders the possibility of living well, and what factors are particularly important to them as regards being able to live well with dementia? At Baseline (Wave 1), data from 1547 PwD and 1283 Carers were included in the programme. Participants were interviewed again at 12 months (Wave 2; 1190 PwD and 992 Carers) and 24 months (Wave 3; 856 PwD and 760 Carers). Interviews were carried out in participants’ own homes. Researchers were NHS staff working from one of 29 research sites across Great Britain. Completed surveys were returned to North Wales Organisation for Randomised Trials in Health (NWORTH) for data entry and dataset production.

Data creators:
Creator Name Affiliation ORCID (as URL)
Clare Linda University of Exeter
Martyr Anthony University of Exeter
Sponsors: Economic and Social Research Council, National Institute for Health Research
Grant reference: ES/L001853/2
Topic classification: Health
Project title: Living well with dementia
Alternative title: The IDEAL Programme Waves 1 to 3
Grant holders: Linda Clare, Ian R. Jones, Christina R. Victor, John V. Hindle, Roy W. Jones, Martin Knapp, Michael D. Kopelman, Rachael Litherland, Anthony Martyr, Fiona E. Matthews, Robin G. Morris, Sharon M. Nelis, James A. Pickett, Catherine Quinn, Jennifer M. Rusted, Jeanette M. Thom
Project dates:
1 March 201431 December 2019
Date published: 27 Apr 2020 15:04
Last modified: 05 Jun 2020 14:06

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