Assessing adherence to National Institute for Health and Care Excellence dementia assessment and diagnosis guidelines in adults with intellectual disability: a retrospective cohort study
| Date | 01 November 2023 |
| Pages | 12-21 |
| DOI | https://doi.org/10.1108/AMHID-07-2023-0022 |
| Published date | 01 November 2023 |
| Author | Caroline Duncan,Ewan Wilkinson,Sujeet Jaydeokar,Daniel James Acton |
Assessing adherence to National Institute
for Health and Care Excellence dementia
assessment and diagnosis guidelines in
adults with intellectual disability: a
retrospective cohort study
Caroline Duncan, Ewan Wilkinson, Sujeet Jaydeokar and Daniel James Acton
Abstract
Purpose –This study aims to evaluate the dementia assessment and diagnosis care provided to
adults with intellectual disability. The authors se lected 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.
Design/methodology/approach –The study population was adults with an intellectual disability who
were diagnosed with dementiabetween January 2019 and December 2022 by a UK-based intellectual
disability service. Datato demonstrate adherence to selected recommendationsand demographic and
clinicalcharacteristics were extracted fromelectronic patient records.
Findings –The authors identified 41 individuals. A mean of six of the eight recommendations were
adhered to. There was lowadherence with structural imaging to support dementiasubtype 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 demographicor clinical characteristics
were associatedwith level of adherence recorded. The authorsfound incomplete recording of diagnostic
clinical coding in electronic patientrecords. This may disadvantage this population, as they cannot be
readilyidentified for post diagnostic support or resourceallocation.
Originality/value –To the best of the authors’knowledge, this is the first study to examineadherence to
these NICEguidelines in this population.
Keywords Guidelines, Adherence, Learning disability, Ageing, Older adults, Clinical coding
Paper type Research paper
Introduction
Globally it is estimated that there are over 55 million people diagnosed with dementia, with almost
10 million new cases each year (World Health Organisation, 2023). It is estimated that in the UK,
885,000 people are living with dementia (National Institute for Health and Care Excellence, 2022).
These figures highlight that dementia is a significant problem in ageing populations.
In the UK, there are 1.5 million people with intellectual disability (Public Health England,
2016). People with intellectual disability are at greater risk of developing dementia, as
defined in the coding from the International Classification of Disease (ICD) 10th edition
(World Health Organization, 1993), with empirical evidence suggesting a prevalence rate
up to three time higher than within the general population (Strydom et al., 2013). Evidence
(Informationabout the
authorscan be found at the
end of this article.)
Received 14 July 2023
Revised 11 September 2023
Accepted 14 October 2023
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 Med
ecins
sans Frontie
`res. 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 throughthe 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
EnvironmentalScience, University
of Exeter, UK. The sort it course
that ENABLEDthis 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.
PAGE 12 jADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES jVOL. 18 NO. 12024, pp. 12-21,©EmeraldPublishing Limited, ISSN 2044-1282 DOI 10.1108/AMHID-07-2023-0022
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