What are the factors associated with people with advanced dementia refusing assistance with personal care?

Backhouse, Tamara ORCID: https://orcid.org/0000-0001-8194-4174, Killett, Anne ORCID: https://orcid.org/0000-0003-4080-8365, Mioshi, Eneida and Khondoker, Mizanur ORCID: https://orcid.org/0000-0002-1801-1635 (2023) What are the factors associated with people with advanced dementia refusing assistance with personal care? International Journal of Geriatric Psychiatry, 38 (1). ISSN 0885-6230

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BACKGROUND: People with dementia sometimes refuse assistance with personal care activities such as washing or dressing. We aimed to investigate the factors associated with refusals of care in advanced dementia. METHODS: a cross-sectional study using informant-based measures. Participants were people with advanced dementia and their caregivers (family carers or care-home staff) (n=260, 130 dyads) in the UK. Mixed effects linear models were used to examine the effects of neuropsychiatric behaviours, ability with activities of daily living, professional input, co-morbidities, psychotropic medications, environment modifications, and caregiver factors including type and training status on refusals of care. The Refusal of Care Informant Scale was used, range 1-13; higher scores indicate more refusal behaviours. RESULTS: higher independence in activities of daily living was associated with less refusal behaviours (coefficient = -0.11, p<0.001 [95% confidence interval -0.15, -0.07]). Higher agitation was associated with more refusal behaviours (0.11, p<0.001 [0.06, 0.15]). No other statistically significant differences were found. There was no demonstrable evidence of differences in number of refusals of care between family and care-home caregivers or between dementia-trained or -untrained caregivers. CONCLUSIONS: results suggest refusals of care have similar prevalence regardless of caregiver type (family or care home) or dementia training status, indicating that current dementia training has no impact on refusals of care or may not be implemented as intended. Improving independence in activities of daily living and reducing agitations may help prevent refusals of care. To establish causality, future research should consider embedding these factors into interventions targeting refusal of care.

Item Type: Article
Additional Information: Funding information: This work was supported by a fellowship award from The Alzheimer’s Society, UK (Grant Number: AS-JF-17-002). The work was sponsored by, and conducted at, the University of East Anglia. Authors TB, EM, and AK are supported by the National Institute for Health and Care Research Applied Research Collaboration East of England (ARC EoE). The views expressed are those of the authors and not necessarily those of the Alzheimer’s Society, National Institute for Health and Care Research, or the University of East Anglia.
Uncontrolled Keywords: care home,dementia,family carer,refusals of care,resistance-to-care,geriatrics and gerontology,psychiatry and mental health ,/dk/atira/pure/subjectarea/asjc/2700/2717
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
Faculty of Medicine and Health Sciences > Norwich Medical School
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Depositing User: LivePure Connector
Date Deposited: 22 Nov 2022 14:31
Last Modified: 30 Apr 2023 06:31
URI: https://ueaeprints.uea.ac.uk/id/eprint/89956
DOI: 10.1002/gps.5857

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