Linguistic and Cultural Adaptation and Translation Into Arabic of the Dementia Screening Questionnaire for Individuals With Intellectual Disabilities (DSQIID): The DSQIID‐A (Arabic)

ABSTRACT

Background

Dementia is highly prevalent globally with a fivefold increased risk in individuals with intellectual disabilities, particularly those with Down syndrome. Culturally and linguistically sensitive screening tools to aid diagnosis and referral are essential to assist this population. The Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) is the most psychometrically validated assessment tool for this population; however, no validated version for Arabic‐speaking populations exists.

Methods

This study employed a structured Delphi Process, translating and culturally adapting the DSQIID into Arabic using Arabic‐speaking bilingual experts to ensure linguistic and cultural diversity including initial and back translations and two expert Delphi rounds.

Results

The translation and adaptation process identified a series of adaptations incorporating word equivalence, context sensitivity, synonym selections, tense differentiations, multiple meanings of words and cultural nuances.

Conclusion

The outcome is a robust translated and adapted version called DSQIID‐A (Arabic) ready for validation in clinical and community settings.

Lay Summary

• Dementia is a very common problem internationally, particularly in populations with intellectual disabilities.

• The Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) is amongst the most widely used and psychometrically robust tools for dementia screening in individuals with intellectual disabilities, but there is no Arabic language version or one that has also been culturally adapted.

• This study used a structured process to translate and culturally adapt the DSQIID for Arabic‐speaking populations.

• The outcome is a carefully developed culturally sensitive Arabic version of the measure called DSQIID‐A (Arabic) that is ready for the clinical and research community to evaluate and validate and then implement to assist people with intellectual disabilities at risk of or experiencing dementia.

1. Introduction

Global health data estimates that the already high rates of dementia (approximately 570 million in 2022) will rise to 154 million by 2050 (Nichols et al. 2022). Of even greater concern is research indicating that the prevalence of dementia is significantly higher amongst individuals with intellectual disabilities compared with the general population, with studies reporting up to a fivefold increased risk, especially amongst those with Down syndrome (Sheehan et al. 2014). A cross‐sectional study revealed a prevalence of dementia as high as 13.9% in people with intellectual disability aged 65–74 years without Down syndrome, highlighting the importance of timely diagnosis and culturally sensitive screening tools to facilitate relevant interventions (Takenoshita et al. 2020).

Research reporting more specifically on prevalence of Alzheimer's disease and other dementias across the Middle East and North Africa regions demonstrated an age‐standardised prevalence of 772.7 per 100,000 (95% UI 671.2–877.6), with dementia accounting for ~73.79k deaths, and the Disability‐Adjusted Life Year (DALY) rate was 476.3 per 100,000 (95% UI 225.6–1004.2). The DALY is a metric used to represent one lost year of healthy life due to illness, disability or premature death. Furthermore, global health synthesis studies reported that that the Middle East and North Africa recorded one of the highest dementia DALY rates amongst global super‐regions (387 per 100,000, 95% UI 172–848), underscoring the public health significance of dementia regionally (Avan et al. 2024). However, no population‐level studies were identified that reported on Middle East and North Africa‐specific dementia prevalence within cohorts with intellectual disabilities.

Accurate dementia screening in individuals with intellectual disabilities, however, poses unique challenges due to pre‐existing cognitive deficits that complicate the assessment of cognitive decline. Commonly used tools for the general population, such as the Mini‐Mental State Examination and the Montreal Cognitive Assessment, often fail to address the unique needs of individuals with intellectual disabilities, leading to issues like floor effects and difficulties in setting appropriate cut‐off points (Palmer 2006).

To address these specific population needs the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID [Deb, Hare, Prior, and Bhaumik 2007]) was specifically developed to detect changes in behaviour and cognitive abilities relative to a baseline, offering higher sensitivity and specificity in this population. The DSQIID has demonstrated good psychometric properties, been validated in multiple languages, retaining its sensitivity and specificity across translations (Gomiero et al. 2017; Kuske et al. 2017) and is widely considered the measure of choice in this specialised area. However, linguistic and cultural adaptation remains a critical step in ensuring the tool's effectiveness. Whilst the DSQIID has been translated into various languages (such as Chinese and Japanese [Li et al. 2014]) there is currently an absence any validated version for Arabic‐speaking populations.

Given the significant diversity within Arabic dialects, creating an Arabic version, in Modern Standard Arabic (MSA) that is comprehensible across regions is vital for its effective application. The creation of an MSA version requires two substantive programmes of work. The first being the process of translating, back translating and culturally adapting the tool in a systematic and evidence‐based manner. This first programme of work is considerable in that it requires thoughtful attention to and confirmation of wording and phrasing that is culturally and linguistically consistent, understood and acceptable and within the specific population of intellectual disability patients with dementia. This process requires consideration of a range of features such as word equivalence, context sensitivity, synonym selections, tense differentiations, multiple meanings of words and cultural nuances. A second programme of work involves the testing the psychometric properties of the translated and adapted measure in the clinical and community population of relevance. This study focuses on the first component of translating and culturally adapting the DSQIID into a regionally accessible and acceptable version of MSA, ensuring its usability across Arabic‐speaking regions, particularly the Gulf area. This will then put the measure into the public domain to allow clinical and research approaches to perform the psychometric testing across patients with intellectual disability and dementia across the Arabic‐speaking world.

2. Methodology

The structured Delphi method was utilised for the translation and adaptation of the DSQIID into MSA, referred to here as the DSQIID‐A (Arabic version). The translators, back‐translators and Delphi group members were native Arabic speakers and represented four major Arabic dialect groups: Levantine, Sudanese, Egyptian and Emirati/Gulf. The list of experts can be seen in Appendix S1. Whilst the DSQIID‐A is written in neutral MSA, the decision to include this breadth of backgrounds and dialects of the translators, back‐translators and Delphi panel was important in ensuring consensus that the final neutral MSA version of the DSQIID‐A retained the intended meaning of the original items and was also accessible and comprehensible for Arabic speakers across background and dialect diversity.

The steps in the methodology included an initial translation, back translation, two expert Delphi rounds, linguistic adaptation and a final review. The process was conducted in a manner consistent with international test commission guidelines for neuropsychological applications in the translation and adapting of tests (Nguyen et al. 2024) and with the specific considerations recommended when conducting neuropsychiatric assessments with Arabic‐speaking patients (Taiebine 2024). Whilst the study set the Delphi consensus target at ≥ 80% agreement amongst panellists, the iterations refining the wording within the Delphi team continued in the review session until each item reached 100% consensus (CVI of 1).

All necessary approvals were obtained from the tool's owner (Deb), and copyright guidelines were respected and adhered to throughout. As the study did not involve participants or assess any personal information, views or attitudes, it was deemed as not requiring formal IRB approval.

3. Results

3.1. Initial Translation

The initial translation was carried out independently by two Arabic‐speaking professionals: a clinical psychologist and a psychiatrist. Each translator approached the text with a focus on cultural and linguistic appropriateness. The two resulting Arabic versions were then compared and reconciled into a single draft after identifying and resolving discrepancies. This stage highlighted several linguistic challenges: Word Equivalence: Words like ‘wandering’ lacked a direct Arabic equivalent, requiring the addition of descriptive terms to convey the intended meaning. Context Sensitivity: The term ‘screening’ was debated, with ‘فحص’ chosen over ‘ikhtibar اختبار ’ due to its greater familiarity in medical contexts. Synonym Selection: Differences in Arabic synonyms, such as ‘individuals’ versus ‘persons’, were discussed and ‘individuals’ was selected to ensure precision and inclusivity.

3.2. Back Translation

The draft was then back‐translated into English by three bilingual Arabic‐English professionals (a nurse and two psychiatrists) from diverse Arabic‐speaking regions (UAE, Sudan and Egypt). This step revealed further linguistic challenges: Tense Differentiation: Arabic's rich grammatical structure often blurred distinctions between present and past tenses, requiring additional review to ensure accurate alignment with the original English text. Multiple Meanings: Words with multiple meanings, such as ‘speaking’, posed difficulties. The team reached a consensus on terms most comprehensible to Arabic speakers across the Gulf and neighbouring regions. Cultural Nuances: Complex concepts like ‘appears uneasy’ were adapted to culturally resonant phrases such as ‘يبدو عليه عدم الأمان’ (‘appears unsafe’), ensuring clarity without altering the meaning. Furthermore, words like cleaning, which in the tool related to maintaining self‐hygiene, which in Arabic can be اغتسال rather than استحمام, as in Arabic culture cleanliness and self‐hygiene is expanded to beyond showering or hygiene to religious practices as well.

3.3. Delphi Rounds

The Delphi method involved iterative expert discussions and refinements:

First Delphi Round: A diverse panel of experts reviewed the translated text, focusing on linguistic nuances and regional dialectal differences. For example: Words like ‘unsettled’ were rephrased to maintain neutrality and avoid misinterpretation in various dialects. The term ‘social withdrawal’ was discussed for its cultural sensitivity, resulting in a clear and universally understood phrase. Second Delphi Round: After the back‐translation process, adjustments were made to ensure alignment with the original version. Key changes addressed inconsistencies in terminology and resolved remaining ambiguities.

3.4. Linguistic Adaptations

To create a version understandable to the wider Arabic‐speaking population, particularly in the Gulf area, specific linguistic and cultural adaptations were made: Dialect Neutrality: Care was taken to avoid region‐specific idioms or phrases, ensuring the text was comprehensible to Arabic speakers across diverse backgrounds yet we focused on Gulf dialect. Word Reordering: Arabic sentence structure often differs significantly from English, necessitating rearrangement of words to maintain grammatical correctness and clarity. Idiomatic Expressions: Literal translations were avoided in favour of culturally appropriate equivalents. For instance, phrases describing social behaviours were modified to align with commonly understood Arabic expressions.

3.5. Final Review

The final Arabic version underwent a comprehensive review for clarity and usability. Specific emphasis was placed on: Ensuring medical terminology (e.g., ‘dementia screening’) was accurately translated whilst remaining understandable to lay caregivers. Aligning the phrasing of behavioural and cognitive descriptors with colloquial Arabic without compromising the scientific integrity of the questionnaire.

3.6. Additional Linguistic Challenges

From the initial translation to the Delphi rounds, the following specific challenges were addressed: (1) Grammatical Complexity: Arabic's complex grammar, including gendered verbs and plural forms, required careful adaptation to ensure neutrality and inclusivity. (2) Semantic Ambiguity: Words with broad or region‐specific meanings were scrutinised. For example, ‘wanders aimlessly’ was expanded into ‘يتجول بلا هدف’ to provide clarity. (3) Medical Terminology Familiarity: Terms like ‘screening’ and ‘assessment’ were carefully selected to reflect their common usage in medical settings whilst avoiding overly technical language.

The final DSQIID‐Arabic version can be seen in Table 1.

TABLE 1.

Dementia screening questionnaire for individuals with intellectual disabilities‐Arabic version (DSQIID‐A).

Note: Based on original DSQIID: Professor Shoumitro Deb, MBBS, FRCPsych, MD, Imperial College London, UK, Department of Medicine, Division of Brain Sciences, E‐mail: s.deb@imperial.ac.uk URL: www.imperial.ac.uk July 2018 (Deb, Hare, and Prior 2007; Deb, Hare, Prior, and Bhaumik 2007).

4. Discussion

Dementia represents a major global health concern, with individuals with intellectual disabilities at even higher risk (Sheehan et al. 2014). Timely diagnosis and culturally sensitive screening are critical to facilitate relevant interventions; however, such screening tools must be culturally and linguistically adapted to meet the needs of at‐risk diverse populations. The translation and adaptation of the DSQIID into Arabic (the DSQIID‐A) in this study, utilising a highly structured and best practice approach, represents a significant milestone in dementia screening for Arabic‐speaking populations.

As noted in the results, decisions were required at each stage of the process to ensure the measure accommodated Arabic linguistic and cultural diversity. These considerations related to word equivalence, context sensitivity, synonym selections, tense differentiations, multiple meanings of words and cultural nuances. In addition, further linguistic adaptations were required to address dialect neutrality, word reordering to aid comprehension and representation of concepts through Arabic idiomatic expressions.

By addressing linguistic nuances and ensuring cultural relevance, this study has sought to make dementia screening accessible and effective for individuals with intellectual disabilities across the Arab world. The study has also highlighted the importance of multidisciplinary collaboration and the integration of regional expertise to create tools that resonate with diverse communities.

It is acknowledged that this study is limited in addressing just the first step in the process of the validation of the DSQIID‐A. Recommendations for a subsequent programme of research that builds on the robust development of the DSQIID‐A reported here include an initial pilot study examining the face validity, accessibility and appropriateness of the measure with caregivers. This step should be followed by a more substantive evaluation of the DSQIID‐A, examining its psychometric (reliability, factor structure and validity) properties in clinical and community settings stratified across regionally and linguistically diverse Arabic‐speaking groups. Such research will pave the way for improved diagnosis and care in this high need population.

5. Conclusion

This study employed an evidence‐based comprehensive and structured Delphi Process to translate and culturally adapt the DSQIID into Arabic. The outcome is a robust translated and adapted version called DSQIID‐A (Arabic) ready for stratified validation across regionally and linguistically diverse Arabic‐speaking clinical and community settings.

Author Contributions

Madonna Hany Youssef Yanni contributed to the conception, design and implementation of the study and the drafting and revising of the manuscript. Mohammed Abdelbagi Elmubarak contributed to the design and implementation of the study and the drafting and revising of the manuscript. Hind Majid Mohammed Al Ali contributed to the design and implementation of the study and the drafting and revising of the manuscript. Nadia Essa Mohammed Ali AlShammar contributed to the design and implementation of the study and the drafting and revising of the manuscript. Amina AlShammar contributed to the design and implementation of the study and the drafting and revising of the manuscript. Noura Suhail Alabrach contributed to the design and implementation of the study and the drafting and revising of the manuscript. David Forbes contributed to the drafting, revising and critical oversight of the manuscript. Madhusudan Deepak Thalitaya contributed to the design and implementation of the study and the drafting and revising of the manuscript.

Funding

The authors have nothing to report.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Appendix S1: List of experts involved in translation, backtranslation and Delphi panel.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.