Research Data Leeds Repository

Dementia Carers Instrument Development (DECIDE) Workstream 1 Phase 3 data

Wright, Penny and Oyebode, Jan and Clare, Linda and Brayne, Carol and Al-Janabi, Hareth and Hoare, Zoe and Kind, Paul and Tennant, Alan and Shearsmith, Leanne and Megson, Molly and Roberts, Linda, NWORTH Clinical Trials Unit, Bangor (2018) Dementia Carers Instrument Development (DECIDE) Workstream 1 Phase 3 data. University of Leeds. [Dataset]

This item is part of the Dementia Carers Instrument Development (DECIDE) collection.

Dataset description

This dataset contains survey data (quantitative) collected at two of three time points from informal carers of people with dementia who live in the community: at baseline (T1; n=570) and for a subset of carers six months later (T3; n=173). Test-retest data (T2) are not included in the dataset. Carers were defined as a person who provides care for a relative, friend or neighbour with dementia, who cannot cope without their support. This care may include practical household tasks, personal care, supervision, emotional support and social interaction. Carers were eligible to take part if aged ≥16 years, with capacity and English literate, and a primary carer for a partner, family member, friend or neighbour who had a diagnosis of dementia and who lives in the community. Seventy items were included that were generated from the qualitative interviews in DECIDE Phase 1. Data also included responses from the validated questionnaires EQ-5D-3L (Williams A. Euroqol - A new facility for the measurement of health-related quality-of-life. Health Policy. 1990;16(3):199-208.) and from the SWEMWBS (Tennant, R. et al. The Warwick-Edinburgh mental well-being scale (WEMWBS): development and UK validation. Health Qual Life Outcomes. 2007;5). Carers also completed sociodemographic questions.

Additional information: The quantitative data will be released as soon as journal publications are accepted. 08/11/2019 - quantitative data released
Keywords: dementia, carers, psychometric, evaluation, quantitative, questionnaire, development, quality of life, needs-led, community, informal carer, burden, sociodemographic, SWEMWBS, EQ-5D
Subjects: L000 - Social studies > L500 - Social work > L510 - Health & welfare
Divisions: Faculty of Medicine and Health > School of Medicine
Related resources:
Date deposited: 17 Sep 2018 11:36




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