This study aims to evaluate the dementia assessment and diagnosis care provided to adults with intellectual disability. The authors selected recommendations from the National Institute for Health and Care Excellence (NICE) standards which could be evidenced in clinical notes and aimed to identify characteristics which may be associated with improved adherence to these recommendations.
The study population was adults with an intellectual disability who were diagnosed with dementia between January 2019 and December 2022 by a UK-based intellectual disability service. Data to demonstrate adherence to selected recommendations and demographic and clinical characteristics were extracted from electronic patient records.
The authors identified 41 individuals. A mean of six of the eight recommendations were adhered to. There was low adherence with structural imaging to support dementia subtype diagnosis (9 individuals, 22%). This may be linked with the low percentage of people diagnosed with vascular dementia (1 individual, 2%) despite a national figure of 20%. No demographic or clinical characteristics were associated with level of adherence recorded. The authors found incomplete recording of diagnostic clinical coding in electronic patient records. This may disadvantage this population, as they cannot be readily identified for post diagnostic support or resource allocation.
To the best of the authors’ knowledge, this is the first study to examine adherence to these NICE guidelines in this population.
This project was conducted through the Structured Operational Research and Training Initiative (SORT IT), a global partnership led by the Special Programme for Research and Training in Tropical Diseases at the World Health Organization. The training is based on a course developed jointly by the International Union Against Tuberculosis and Lung Disease (The Union) and Medécins sans Frontières. This specific SORT IT program was run by Cheshire and Wirral Partnership (CWP) NHS Foundation Trust as part of routine work. Mentorship and the coordination/facilitation of these SORT IT workshops were provided through the CWP NHS Foundation Trust; The Centre for Operational Research, The Union, Paris, France; The Institute of Medicine, University of Chester, UK; and College of Life and Environmental Science, University of Exeter, UK. The sort it course that ENABLED this project was funded by CWP NHS Foundation Trust. The project itself did not receive any specific grant from funding agencies in the public, commercial or not-for-profit sectors. All the authors declare no conflicts of interest.
Duncan, C., Wilkinson, E., Jaydeokar, S. and Acton, D.J. (2023), "Assessing adherence to National Institute for Health and Care Excellence dementia assessment and diagnosis guidelines in adults with intellectual disability: a retrospective cohort study", Advances in Mental Health and Intellectual Disabilities, Vol. ahead-of-print No. ahead-of-print. https://doi.org/10.1108/AMHID-07-2023-0022
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