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Backhouse, Tamara 
ORCID: https://orcid.org/0000-0001-8194-4174, Khondoker, Mizanur ORCID: https://orcid.org/0000-0002-1801-1635, Killett, Anne ORCID: https://orcid.org/0000-0003-4080-8365 and Mioshi, Eneida
(2023)
Most common refusals of personal care in advanced dementia: Psychometric properties of the Refusal of Care Informant Scale (RoCIS).
The Gerontologist, 63 (8).
1330–1340.
ISSN 0016-9013
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Abstract
Background and Objectives: Refusals of care in dementia can be a source of distress for people with dementia and their caregivers. Informant-based measures to examine refusals of care are limited and often measure other behaviours such as agitation. We aimed to assess the validity and reliability of the newly developed, 14-item, Refusal of Care Informant Scale (RoCIS) and then use the scale to verify the most common refusal behaviours. Research Design and Methods: Data from 129 dyads were analysed. Dyad was defined as a person with advanced dementia either living in a care home or supported in their own home and their caregiver. Data about the person with dementia were gathered using informant-based questionnaires. The psychometric properties of the RoCIS were investigated using Rasch analysis to determine validity and reliability. Results: Following Rasch analysis, the item ‘upset’ was removed from the RoCIS. The reduced 13-item RoCIS is unidimensional and achieved a reliability index of 0.85 (Cronbach’s alpha 0.88). 68% of people with dementia had refused care in the last month, with ‘verbally refused’ the most common type of refusal behaviour. People in the ‘very severe/profound’ stage of dementia showed more refusal behaviours than those in the ‘severe’ stage. Discussion and Implications: Results provide initial evidence that the RoCIS is a valid and reliable informant-based scale measuring refusals of care in advanced dementia. Results indicate a need to develop new approaches and techniques to make assistance with personal care more acceptable to people with dementia.
| Item Type: | Article |
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| Additional Information: | Funding information: T. Backhouse was supported by a fellowship award from the Alzheimer’s Society, UK (372 (AS-JF-17-002)). T. Backhouse, E. Mioshi, and A. Killett are supported by the National Institute for Health Research Applied Research Collaboration East of England (ARC EoE) programme. The views expressed are those of the authors and not necessarily those of the Alzheimer’s Society, National Institute for Health Research, or the University of East Anglia. |
| Uncontrolled Keywords: | activities of daily living,rejection,resistance,medicine(all) ,/dk/atira/pure/subjectarea/asjc/2700 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > School of Health Sciences Faculty of Medicine and Health Sciences > Norwich Medical School |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Science > Research Groups > Norwich Epidemiology Centre Faculty of Medicine and Health Sciences > Research Groups > Norwich Epidemiology Centre Faculty of Medicine and Health Sciences > Research Groups > Public Health and Health Services Research Faculty of Medicine and Health Sciences > Research Groups > Epidemiology and Public Health Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging |
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| Depositing User: | LivePure Connector |
| Date Deposited: | 28 Apr 2022 09:30 |
| Last Modified: | 11 Sep 2023 08:30 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/84830 |
| DOI: | 10.1093/geront/gnac066 |
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