期刊论文详细信息
BMC Public Health
Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life
Rosalie M. Ashworth1  Linda Clare1  Jemma Regan1  Marta Bieńkiewicz1  Christina R. Victor2  Eleanor Ann van den Heuvel2  Yu-Tzu Wu3  Catherine Quinn3  Ruth A. Lamont3  John V. Hindle3  Sharon M. Nelis3  Barbora Silarova3  Anthony Martyr3  Clive Ballard4  Piers Kotting4  Rachael Litherland5  Robin G. Morris6  Martin Knapp7  Catherine Henderson7  Fiona E. Matthews8  Julian C. Hughes9  Roy W. Jones9  Jennifer M. Rusted1,10  Ian R. Jones1,11  Alexandra Hillman1,11 
[1] Alzheimer’s Society Centre of Excellence, Centre for Research in Ageing and Cognitive Health (REACH), College of Medicine and Health, South Cloisters, St Luke’s Campus;Brunel University London, College of Health and Life Sciences, Department of Clinical Sciences;Centre for Research in Ageing and Cognitive Health (REACH), College of Medicine and Health, South Cloisters, St Luke’s Campus;College of Medicine and Health, St Luke’s Campus;Innovations in Dementia;King’s College London, Henry Wellcome Building, Institute of Psychiatry, Psychology, and Neuroscience;London School of Economics and Political Science;Newcastle University, Institute for Health and Society, Biomedical Research Building, Campus for Ageing and Vitality;RICE (The Research Institute for the Care of Older People), Royal United Hospital;University of Sussex, School of Psychology;WISERD, Cardiff University;
关键词: Alzheimer’s disease;    Caregivers;    Dementia;    Longitudinal studies;    Quality of life;   
DOI  :  10.1186/s12889-018-6129-7
来源: DOAJ
【 摘 要 】

Abstract Background There is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to ‘live well’ vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs. Methods IDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain. The existing cohort will be enriched with additional participants with mild-to-moderate dementia (and their primary carers where available and willing) from the following groups: people with rarer forms of dementia, and/or those who are ≥90 years or < 65 years of age at time of recruitment. We will assess the primary outcome, capability to live well with dementia, and the factors influencing it using questionnaires at yearly intervals for 3 years. Additionally, we will seek to link the cohort data with administrative data to obtain information about health service use. Some participants will be invited for in-depth face-to-face interviews. The cohort study will be supplemented by linked research focusing on: the co-production of new measures of living well; including the perspectives of people with advanced dementia living in residential care settings; including people with dementia from black, Asian, and minority ethnic groups; and understanding the experience of people living with undiagnosed dementia. Discussion IDEAL-2 will provide evidence about the key indicators of, and factors associated with, living well over the course of dementia and how these differ for particular subgroups. It will tell us which combinations of services and support are most beneficial and cost-effective. Moreover, the IDEAL-2 study will gather evidence from under-researched groups of people with dementia, who are likely to have their own distinct perceptions of living well.

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