Screening and diagnosing dementia in people with Down’s syndrome: implications of using the DLD questionnaire
| DOI | https://doi.org/10.1108/AMHID-04-2022-0015 |
| Published date | 11 October 2022 |
| Date | 11 October 2022 |
| Pages | 239-248 |
| Author | Bhathika Perera,Lukasz Kamieniarz,Mashal Iftikhar,Solomis Solomou |
Screening and diagnosing dementia in
people with Down’s syndrome:
implications of using the
DLD questionnaire
Bhathika Perera, Lukasz Kamieniarz, Mashal Iftikhar and Solomis Solomou
Abstract
Purpose –The Dementia Questionnaire for People with Learning Disabilities (DLD) is one of the main
screening and monitoring tools for dementia in people with Down’s syndrome (DS). As part of a quality
improvement project to improve the care for people with DS and dementia in an intellectual disability
service, the authors studied the screening and monitoring process by retrospectively investigating the
use of DLD andexploring clinicians’ experienceof using it.
Design/methodology/approach –DLDs completed in the service was retrospectively assessed.
Changes in DLD scores were matched against people who received a clinical diagnosis of dementia.
Data were analysedto estimate sensitivity, specificity and predictivevalues of DLD. A questionnaire was
used to assessclinicians’ experience.
Findings –Data for 20 service users was collected.DLD cognitive scores showed 80% sensitivity and
60% specificity for the diagnosis of dementia, with a positive predictive valueof 40% and negative
predictive value of 90%. Staff found DLD to be easy to perform but time consuming. This led to the
preparationof a decision tool for appropriateness of performinga DLD.
Originality/value –The results show that a negative DLD helps to exclude dementia where there is
concern over cognitive decline, but a positive result is not specific enough to suggest the possibilityof
dementia. This showsthat DLD may have limitations if used as a screening tool alone but could be used
for the monitoring of the disease trajectory of those with a confirmed diagnosisas well as to establish a
baselineDLD when a person is screened for dementiafirst.
Keywords Down’s syndrome, Memory, Quality improvement, Dementia, Intellectual disability,
Dementia questionnaire for people with learning disabilities
Paper type Research paper
Background
Dementia is a neurodegenerative disorder with a progressive decline inmemory and other
cognitive functions. It is more prevalent in people with Down’s syndrome (DS) compared to the
general population (Head et al., 2012). People with DS represent the largest group of dementia
sufferers under the age of 50years (Ballard et al.,2016). Studies have reported prevalence to
range from 4% to 55% in 50- to –59-year-olds (Ballard et al.,2016). Difficulties in estimating the
prevalence ultimately stems from diagnostic uncertainty because thediagnosis of dementia is
rooted in the clinical history of decline in cognition. It is further challe nged because of a prolonged
pre-clinical phase presenting with non-specific symptoms that do not meet the criteria for
dementia. People with DS can present with executive function deficits along with behavioural and
psychological symptoms before developing memory deficits (Lautarescu et al., 2017).
Assessment of cognitive functions can be challenging in people with DS compared to general
Bhathika Perera,
Lukasz Kamieniarz,
Mashal Iftikhar and
Solomis Solomou are all
based at the Barnet Enfield
and Haringey Mental Health
NHS Trust, London, UK.
Received 12 April 2022
Revised 24 August 2022
Accepted 14 September 2022
This research received no specific
grant from any fundingagency in
the public, commercial, or
not-for-profit sectors.
DOI 10.1108/AMHID-04-2022-0015 VOL. 16 NO. 42022, pp. 239-248, ©Emerald Publishing Limited, ISSN 2044-1282 jADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIESjPAGE 239
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