Yes / 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.
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.
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 underresearched
groups of people with dementia, who are likely to have their own distinct perceptions of living well. / Alzheimer’s Society (grant number 348 (AS-PR2–16-001)). The University of Exeter is the sponsor of this study.
| Identifer | oai:union.ndltd.org:BRADFORD/oai:bradscholars.brad.ac.uk:10454/16675 |
| Date | 30 October 2018 |
| Creators | Silarova, B., Nelis, S.M., Ashworth, R.M., Ballard, C., Bienkiewicz, M., Henderson, C., Hillman, A., Hindle, J.V., Hughes, J.C., Lamont, R.A., Litherland, R., Jones, I.R., Jones, R.W., Knapp, M., Kotting, P., Martyr, A., Matthews, F.E., Morris, R.G., Quinn, Catherine, Regan, J., Rusted, J.M., van den Heuval, E.A., Victor, C.R., Wu, Y.-T., Clare, L. |
| Source Sets | Bradford Scholars |
| Language | English |
| Detected Language | English |
| Type | Article, Published version |
| Rights | © 2018 The Authors. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/) The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
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