Developing and implementing guidelines on culturally adapting the Addenbrooke's cognitive examination version III (ACE-III): a qualitative illustration

Abstract

Background:
Cognitive tests currently used in healthcare and research settings do not account for bias in performance that arises due to cultural context. At present there are no universally accepted steps or minimum criteria for culturally adapting cognitive tests. We propose a methodology for developing specific guidelines to culturally adapt a specific cognitive test and used this to develop guidelines for the ACE-III. We then demonstrated their implementation by using them to produce an ACE-III Urdu for a British South Asian population.

Methods:
This was a several stage qualitative study. We combined information from our systematic review on the translation and cultural adaptation of the ACE-III with feedback from previous ACE-III adaptors. This identified steps for cultural adaptation. We formatted these into question-by-question guidelines. These guidelines, along with feedback from focus groups with potential users were used to develop ACE-III Urdu questions. Clinical experts reviewed these questions to finalise an ACE-III Urdu.

Results:
Our systematic review found 32 adaptations and we received feedback from seven adaptors to develop the guidelines. With these guidelines and two focus groups with 12 participants a sample ACE-III Urdu was developed. A consensus meeting of two psychiatrists with a South Asian background and familiarity with cognitive tests and cultural adaptation finalised the ACE-III Urdu.

Conclusions:
We developed a set of guidelines for culturally adapting the ACE-III that can be used by future adaptors for their own language or cultural context. We demonstrated how guidelines on cultural adaptation can be developed for any cognitive test and how they can be used to adapt it.

Full text

R E S E A R C H A R T I C L E Open Access
Developing and implementing guidelines
on culturally adapting the Addenbrooke’s
cognitive examination version III (ACE-III): a
qualitative illustration
Waquas Waheed
1
, Nadine Mirza
1*
, Muhammed Wali Waheed
2
, Abid Malik
3
and Maria Panagioti
1
Abstract
Background: Cognitive tests currently used in healthcare and research settings do not account for bias in
performance that arises due to cultural context. At present there are no universally accepted steps or minimum
criteria for culturally adapting cognitive tests. We propose a methodology for developing specific guidelines to
culturally adapt a specific cognitive test and used this to develop guidelines for the ACE-III. We then demonstrated
their implementation by using them to produce an ACE-III Urdu for a British South Asian population.
Methods: This was a several stage qualitative study. We combined information from our systematic review on the
translation and cultural adaptation of the ACE-III with feedback from previous ACE-III adaptors. This identified steps
for cultural adaptation. We formatted these into question-by-question guidelines. These guidelines, along with
feedback from focus groups with potential users were used to develop ACE-III Urdu questions. Clinical experts
reviewed these questions to finalise an ACE-III Urdu.
Results: Our systematic review found 32 adaptations and we received feedback from seven adaptors to develop
the guidelines. With these guidelines and two focus groups with 12 participants a sample ACE-III Urdu was
developed. A consensus meeting of two psychiatrists with a South Asian background and familiarity with cognitive
tests and cultural adaptation finalised the ACE-III Urdu.
Conclusions: We developed a set of guidelines for culturally adapting the ACE-III that can be used by future
adaptors for their own language or cultural context. We demonstrated how guidelines on cultural adaptation can
be developed for any cognitive test and how they can be used to adapt it.
Keywords: Cross cultural, Ethnic minority, Non-English, Language, Psychometrics, Scale development, Transcultural,
Translation
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* Correspondence: nadine.mirza@postgrad.manchester.ac.uk
1
Centre for Primary Care and Health Services Research, The University of
Manchester, Suite 8, 5th Floor, Williamson Building Oxford Road, Manchester
M13 9PL, UK
Full list of author information is available at the end of the article
Waheed et al. BMC Psychiatry (2020) 20:492
https://doi.org/10.1186/s12888-020-02893-6
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Background
There is an increasing prevalence of dementia on a glo-
bal scale, with numbers showing there will be a rise from
50 million to 82 million in the next decade [1]. Within
the United Kingdom (UK) there was an estimated 850,
000 people with dementia in 2015 but this is expected to
increase to 1 million by 2021 and over 2 million by 2051
[2]. Thus, the need for early and accurate diagnosis con-
tinues to take precedence [3,4].
In addition to a physical examination and robust inter-
viewing [5] the diagnosis must be supplemented with
the administration of a cognitive test [6]. These cognitive
tests are characterised by their ability to either screen
for or diagnose cognitive impairment and dementia [3].
In many cases they will also investigate severity and the
potential subtype of dementia [7].
This is achieved through questions that assess individ-
ual cognitive capabilities- otherwise known as cognitive
domains- such as attention and orientation, fluency,
memory, language, and visuospatial abilities [5,7]. They
are often administered verbally, consisting of written,
verbal, and sometimes physical tasks, ideally taking
under 30 min [6].
Currently there are over 40 cognitive tests available
and under use in both healthcare settings and within the
context of research [8]. These range from brief screening
tests such as the Six Item Cognitive Impairment Test (6
CIT) [9], Clock Drawing [10], the Mini Cog Test [11],
and Test Your Memory (TYM) [12] to longer more ex-
tensive diagnostic tests such as the Mini Mental State
Examination (MMSE) [13], the Montreal Cognitive As-
sessment (MoCA) [14], and the Addenbrooke’s Cogni-
tive Examination Version III (ACE-III) [15].
These cognitive tests were originally designed for Eng-
lish speaking European countries [16], standardised on
well educated, male, Caucasian outpatients [17]. While
applicable to that demographic, the original versions of
these cognitive tests are not suitable for use with diverse
populations [18].
Within the UK alone, 88 main languages other than
English are spoken [19] and 8% of the population do not
have English as a first language [20]. It is also estimated
that over 864,000 struggle to or are unable to speak Eng-
lish [20]. Cognitive tests in their current state would not
be able to accommodate for these non-English speakers.
Thus, many cognitive tests have been translated into tar-
geted languages. However, these translated versions
haven’t necessarily been psychometrically validated and
translation alone does not address gaps in understanding
and acceptability that arise due to cultural context [4].
In the UK 14% of the population identifies as belong-
ing to an ethnic minority group [19] and this is pre-
dicted to rise to 20% by 2051 [21]. A significant
proportion of these ethnic minorities migrated to the
UK as young adults [22,23]. Therefore, they still adhere
in many ways to the culture of their home countries and
pass this culture on to their children [22,23].
This cultural context cannot be ignored when adminis-
tering cognitive tests as culture influences how a respond-
ent perceives test questions and how they respond to them,
if they are even able to do so [18,24]. This is due to many
cognitive test questions being reliant on a familiarity with
the western calendar and western names, and knowledge of
western history, objects and even wildlife [4]. When these
questions have not been adapted to account for cultural
context bias occurs. This equates to a loss of content
equivalence (the questions are not relevant to the cultural
context), criterion equivalence (the questions are unable
to accurately assess for dementia) and content equivalence
(the questions are no longer able to accurately assess the
individual cognitive domains they were designed to) [25].
This accounts for higher rates of false positive and
false negative scores across cognitive tests within non –
English speakers and ethnic minority groups as
compared to their English speaking and Caucasian coun-
terparts [18,26,27]. It also compromises the generalis-
ability of the results of dementia research that
incorporate these cognitive tests [18,26,27].
To counter this, attempts at designing new cognitive
tests for specific groups have been tried but this was
deemed too time consuming and complex, reducing
feasibility [28]. Another suggestion has been to adjust
cut-off scores for different ethnic minority and non-
English speaking groups but this has been criticised for
reducing sensitivity, specificity and likelihood ratios [29].
Therefore, culturally adapting an existing cognitive test
has been regarded as a preferred alternative.
As mentioned, translating these tests does occur but this
does not overcome the influence of culture beyond flu-
ency in the target language. Existing cultural adaptations
of cognitive tests do exist and have been developed
through a variety of qualitative methods such as the use of
global guidelines, involving experts and potential users in
coproduction, and pilot testing [30]. However, at present
there is no universal standard procedure or minimum cri-
teria for culturally adapting these cognitive tests [31].
Therefore, there must be a global consensus on the
steps and procedures that are essential for undertaking
thorough cultural adaptation of cognitive tests [18].
These must be conducted before the adapted cognitive
tests can be administered in healthcare and research set-
tings. The final step would be a psychometric validation
of the adapted cognitive test within the target popula-
tion. However, prior to this there must be steps that
focus on the cultural adaptation process itself.
We propose that for each cognitive test there should be a
set of guidelines on how to culturally adapt the questions of
that specific test. These would be developed through an
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incorporation of a review of previous literature on that test
[25] with feedback from those who have already adapted it.
These guidelines would provide step by step instructions
on how to culturally adapt every question of that cognitive
test in accordance with evidence to allow for the retention
of content, criterion and conceptual equivalence [25].
The guidelines would then be implemented by using
them to create culturally adapted versions of the cogni-
tive test questions for a particular target demographic.
These versions would be presented to potential users
from the target demographic and clinical experts in the
field. Their feedback would finalise which versions of the
test questions will be retained in the adapted version of
the cognitive test.
Following this there would be a cultural validation of
the adapted cognitive test. This would consist of adminis-
tering it to members of the target population and con-
ducting qualitative cognitive interviews to assess the
adapted cognitive tests understanding and acceptability
within this population [32]. Once this has occurred, as
mentioned, the psychometric validation would take place.
In this paper we will detail the process of developing
and implementing such a set of guidelines for a non-
English speaking ethnic minority group within the UK.
The cognitive test we selected was the ACE-III [15], a
gold standard tool for the diagnostic accuracy of cogni-
tive impairment and dementia [33], consisting of 19
questions that assess the cognitive domains attention,
Table 1 Questions of the Addenbrooke’s Cognitive Examination Version III
Question Number Task/Question
1: Attention –Orientation Ask the day, date, month, year, season, floor, street/hospital, town, county and country.
2: Attention –Registration Say the words lemon, key and ball and ask them to repeat and try to remember.
3. Attention –Concentration Ask to take 7 away from 100 and keep taking 7 away from the new number for 5 trials (Serial 7’s).
4. Memory –Recall Ask for the three words from 2. Attention –Registration.
5a. Fluency –Letters Ask for as many words as they can think of starting with the letter ‘P’, not including names of pronouns, in
one minute.
5b. Fluency –Animals Ask for the names of as many animals as they can think of in one minute.
6. Memory –Anterograde Say the name and address ‘Harry Barnes, 73, Orchard Close, Kingsbridge, Devon’and ask them to repeat and
try to remember.
7. Memory –Retrograde Ask for the name of the current Prime Minister, name of the woman who was Prime Minister, name of the
USA president and name of the USA president who was assassinated in the 1960s.
8. Language –Comprehension Place a pencil and paper in front. Ask to ‘place the paper on top of the pencil’,‘pick up the pencil but not
the paper’and ‘pass me the pencil after touching the paper’.
9. Language –Writing Ask to write two or more complete sentences about their last holiday/weekend/Christmas, without using
abbreviations.
10. Language –Repetition Say the words caterpillar, eccentricity, unintelligible and statistician and ask them to repeat.
11. Language –Repetition Say the proverbs ‘All that glitters is not gold’and ‘A stitch in time saves nine’and ask them to repeat.
12. Language –Naming Show 12 images and ask them to name each.
13. Language –Comprehension Ask to point to ‘the one which is associated with the monarchy’,‘the one which is a marsupial’,‘the one
which is found in the Antarctic’and ‘the one which has a nautical connection’from the 12 images provided.
14. Language –Reading Ask them to read the words sew, pint, soot, dough and height.
15a. Visuospatial Abilities - Infinity
Diagram
Ask them to copy the following:
15b. Visuospatial Abilities –Wire Cube Ask them to copy the following:
15c. Visuospatial Abilities –Clock Ask them to draw a clock face with numbers and the hands at ten past five.
16. Visuospatial Abilities Ask them to count the number of dots without pointing.
17. Visuospatial Abilities Ask them to identify the fragmented letters K, M, A and T.
18. Memory –Recall Ask for the three words from 6. Memory –Anterograde.
19. Memory –Recognition For each word of the name and address that could not be recalled, give the options listed and ask to identify
which word it was.
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memory, fluency, language and visuospatial abilities (See
Table 1).
The ACE-III and its predecessors, the ACE [34] and
ACE-Revised (ACE-R) [35] have been translated into a
range of languages and incorporated into use across the
globe. English versions of the ACE-III have also been
adapted for the UK and the United States of America
(USA). However, the ACE-III was originally designed for
English speakers native to Australia, with a reliance on
knowledge of the cultural background [15] and although
cultural adaptation has been undertaken by adaptors to
produce suitable adaptations [36–38] there are no exist-
ing standardised guidelines for the cultural adaptation of
this cognitive test.
As South Asians are the UKs largest ethnic minority
group, at over 6.3% of the overall population, we selected
them as our target population to culturally adapt for.
The language we chose to adapt in was Urdu [32], a
popular South Asian language and the 4th most com-
mon language spoken in the UK [19]. Prior to this there
was only one other Urdu version of the ACE-III avail-
able, which was culturally adapted for use within India
[39]. Due to this it was not applicable to the cultural
contexts of other South Asian countries where Urdu
speakers reside [40], nor to the Urdu speaking diaspora
within Canada, the Middle East, the US and the UK [41].
Though this paper only details the development and
implementation process of the guidelines, the ACE-III
Urdu we produced through the methods has also under-
gone the cultural validation process, described elsewhere
[32]. This process undertook 25 cognitive interviews
with cognitively healthy Urdu speaking British South
Asians over the age of 60. The ACE-III Urdu will now
need to undergo a psychometric validation before being
made available for widespread use.
Methods
A several stage qualitative approach was undertaken to
develop guidelines for translating and culturally adapting
the ACE-III (See Fig. 1) and implement them to develop
an ACE-III Urdu (See Fig. 2):
Step 1: A systematic review.
Step 2: Receiving feedback from previous ACE-III
adaptors.
Step 3: Collating the data to form guidelines.
Step 4: Implementing guidelines with feedback from
lay persons and clinical experts.
Step 5: Developing the ACE-III Urdu.
Step 1: systematic review
We conducted a systematic review of all existing primary
publications of translations and cultural adaptations of
the ACE-III as well as its predecessors [30].
The electronic databases EMBASE, Medline, and Psy-
chINFO were searched using the search terms “adden-
brooke’s cognitive examination or ace-iii or screen* or
test or instrument or measure or tool or diagnos*”,“de-
mentia or Alzheimer* or cognitive*”and “sensitivity and
specificity or accuracy or cut-off or receiver operator or
ROC or Youden”[30]. We searched from January 2013,
the year the ACE-III was introduced [15], to December
2016, which was when this review was conducted.
Fig. 1 Overview of the process of developing guidelines for translating and culturally adapting the ACE-III
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SCOPUS was also searched for any publication that cited
the original paper [15]. Additionally, we also screened all
included and excluded publications of a meta-analysis of
the ACE and ACE-Revised (ACE-R) [42].
Publications, including validation studies, that incorpo-
rated the use of a translated or culturally adapted ver-
sion of the ACE, ACE-R and ACE-III, from English into
any other language, and were the primary source of that
version, were included. For each of the publications we
extracted data on the version of the ACE that was cul-
turally adapted, the language it was translated into, the
country it was culturally adapted for and the section of
the text that described how it was culturally adapted.
These reported processes were broken down into indi-
vidual steps and grouped by which ACE-III question
they described adapting. This allowed us to identify
which questions were dependent on culture, how they
had been culturally adapted, and what the rationale was
behind the changes.
We also assessed the quality of the reported cultural
adaptation of each publication with the Manchester Cul-
tural Adaptation Reporting Questionnaire (MCAR) [30].
This shows which publications reported their cultural
adaptation process in sufficient detail to be replicated by
future adaptors.
Step 2: feedback from adaptors of the ACE-III
We aimed to receive feedback from official adaptors of
the ACE-III; those who had translated and culturally
adapted it for their respective language and culture and
had made their adaptation available on the Neuroscience
Research Australia (NeuRA) website that hosted the ori-
ginal ACE-III and its implementation materials at the
time of this research [39].
We downloaded all available adaptations of the ACE-
III from the website. We translated them into English
through the use of an online translation application and,
when available, with the aid of postgraduate research
students at the University of Manchester who were na-
tive speakers of the languages. The translated adapta-
tions were read through to identify which questions in
each adaptation of the ACE-III had been culturally
adapted beyond a translation verbatim. For each cultural
adaptation we developed a questionnaire that
highlighted the questions that had been culturally
adapted along with the original ACE-III counterparts
(See Additional file 1for sample questionnaire). We
asked for the rationale behind changing the original
question and the development process of the culturally
adapted version of the question with the rationale.
We distributed the questionnaires to the correspond-
ing adaptors attached with a standardised email relaying
the purpose of the questionnaires and a request for their
completion. We also requested a check of our transla-
tion of their language version. After a two week period
adaptors were sent a follow up email to act as a re-
minder. If adaptors did not initiate any form of contact
after this no further contact was made.
Step 3: data analysis and synthesis
To develop guidelines for culturally adapting the ACE-
III we collated the information from our systematic re-
view [30] and the feedback from adaptors. We identified
sets of mutually exclusive steps for culturally adapting
each question of the ACE-III.
From our systematic review we had broken down the
cultural adaptation processes extracted from each publi-
cation according to ACE-III question. The adaptation
processes for each question across publications were
merged and duplicates removed to identify the mutually
exclusive steps that could be undertaken to adapt each
question.
Fig. 2 Overview of the process of utilising the guidelines to
culturally adapt the ACE-III for British South Asians
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The questionnaires sent to adaptors were already orga-
nised by question. We merged the adaptors’feedback on
the cultural adaptation process of each question. We re-
moved duplicating information so each question had
mutually exclusive steps that could be undertaken to
adapt that question along with the adaptors’accompany-
ing rationale.
The cultural adaptation steps for each ACE-III ques-
tion identified from the systematic review and from the
adaptors’feedback were merged. Duplicates were re-
moved to identify overall mutually exclusive cultural
adaptation steps for each question. Accompanying ra-
tionale was presented with these steps and the respective
publications and adapted versions of the ACE-III were
cited, resulting in a question-by-question set of
guidelines.
Step 4: implementation of the guidelines
We conducted two focus groups within the British South
Asian community of Greater Manchester. We aimed to
recruit 12–14 laymen participants overall, fluent in
speaking and writing Urdu, over the age of 60, able to
give informed consent and who did not have a history of
cognitive impairment.
Participants were voluntarily recruited via convenience
sampling from the local Pakistani Community Day
Centre and provided with an information sheet, available
in English and Urdu. They were given 24 h to decide if
they wished to participate, after which they were con-
tacted by a liaison at the Centre to confirm their partici-
pation and let them know the date and time of the focus
group. These were also held at the centre. On the day of
the focus group participants would be provided with
consent forms and demographics sheets, available in
English and Urdu.
Using the guidelines we produced several culturally
adapted versions of all questions of the ACE-III, backed
up by rationale, for the British Urdu speaking popula-
tion. The most suitable option would need to be se-
lected. We presented these versions of the questions
within our focus groups to receive their feedback on the
questions’cultural appropriateness, which versions
should be retained for a potential ACE-III Urdu and
whether they proposed any changes or suggestions of
their own. This feedback was audio recorded and
transcribed.
We also conducted a consensus meeting with clinical
experts in the relevant fields, local to the Greater Man-
chester area. We aimed to recruit 2–4 experts on de-
mentia, the cognitive testing process and the translation
and cultural adaptation of these tests. They would also
be familiar with the ACE-III, its rationale and how to ad-
minister it. These experts also had to be fluent in
speaking and writing both English and Urdu and familiar
with UK and South Asian cultures. The experts were
recruited voluntarily via convenience sampling. The con-
sensus meeting was held at the Centre for Primary Care
and Health Services Research, at the University of
Manchester, before which informed consent was
obtained.
We presented the focus group feedback within the
consensus meeting and experts determined which were
the most culturally suitable adaptations of each question
of the ACE-III. The consensus meeting was audio re-
corded, transcribed and the data was collated for each
question of the ACE-III to determine how each would
be culturally adapted.
Step 5: developing the ACE-III Urdu
To develop the ACE-III Urdu the template was acquired
through NeuRA, allowing the ACE-III Urdu to retain
the exact same format as the original ACE-III. Urdu is
read from right to left so the template was reversed hori-
zontally such that questions were presented on the right
side of the template and the scoring instructions on the
left side. Standard information requested prior to the ad-
ministration of the ACE-III and instructions for the im-
plementation of the questions were translated into Urdu
and typed out. Each ACE-III question was typed out and
designed according to the suggestions confirmed within
the consensus meeting.
Results
Step 1: systematic review
We identified 113 publications through our search, of
which 32 met out criteria for data extraction and ana-
lysis; 12 for the original ACE, 17 for the ACE Revised
and 3 for the ACE-III. Overall, these publications
spanned 18 languages; Arabic, Cantonese, Chinese,
Czech, Danish, French, German, Greek, Hebrew, Italian,
Japanese, Korean, Lithuanian, Malayalam, Persian,
Portuguese, Slovak and Spanish [30].
The full results of the systematic review are described
elsewhere [30].
Step 2: feedback from adaptors of the ACE-III
Our search of the NeuRA website identified 17 fully
adapted versions of the ACE-III for the languages
Egyptian Arabic, Saudi Arabian Arabic, Chinese,
Estonian, Hebrew, Hindi, Hungarian, Indian Kannada,
Italian, Japanese, Marathi, Polish, Portuguese, Spanish,
Tamil, Telugu and Indian Urdu. Three versions had
been retained in English but culturally adapted for India,
New Zealand and the USA, resulting in a total of 20
ACE-III adaptations.
Of these adaptations the Estonian, Indian Kannada,
Marathi, Japanese, Tamil and Telugu versions could not
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be translated into English due to a lack of resources in
terms of translation applications and translators. They
excluded from our analysis (30%). Questionnaires were
developed for the remaining 14 adaptations (70%) and
distributed to their respective adaptors, of which a total
of seven questionnaires (35%) were returned to us fully
completed.
The original Australian ACE-III was used by the
Hindi, Hungarian and Spanish adaptors (15%) and the
UK version of the ACE-III was used by the Egyptian
Arabic, Hebrew and Welsh adaptors (15%) for their own
adaptations. Polish adaptors used both (5%).
Table 2summarises which questions of the ACE-III
were culturally adapted by which adaptors, thereby
showing the frequency of reported cultural adaptation
undertaken for each question. Table 3shows examples
of the culturally adapted versions of these questions
across a range of languages and cultural contexts. We
can see that all adaptors culturally adapted questions 6,
7, 18 and 19 for memory and questions 10, 11 and 14
for language, and the majority had adapted question 2
for attention. In contrast, none of the adaptors had cul-
turally adapted any of the questions assessing visuo-
spatial abilities. This highlights which cognitive domains,
and their respective questions, rely on culture and which
would suffice with a simple translation into the target
language.
Step 3: data analysis and synthesis
For each question of the ACE-III, the individual cultural
adaptation steps identified from our systematic review
and from adaptors’feedback, along with rationale
undertaken, were tabulated to form the guidelines (See
example in Fig. 3and see Addtional file 2). For each
question the following was presented:
Table 2 Questions of the ACE-III that were culturally adapted by the adaptors
ACE-III Questions
Language of the adaptors 1 2 3 4 5a 5b 6 7 8 9 10 11 12 13 14 15a 15b 15c 16 17 18 19
Egyptian Arabic x x x x x x x x x x x
Hebrew x x x x x x x x x
Hindi x x x x x x x x x x x
Hungarian x x x x x x x
Polish x x x x x x x x x x x
Spanish x x x x x x x x
x
x
Welsh x x x x x x x x x
x = cultural adaptation was undertaken
Table 3 Examples of cultural adaptation of adapted ACE-III questions
ACE-III Question Example of adapted version Language
of version
2: Attention –Registration: Say the words lemon, ask them to repeat and try to
remember.
Lemon was changed to Sliwka (Plum). Polish
5a. Fluency –Letters: Ask for as many words as they can think of starting with the
letter ‘P’, not including names of pronouns, in one minute.
‘P’sound was changed to ‘Sh’sound. Egyptian
Arabic
6. Memory –Anterograde: Say the name and address ‘Harry Barnes, 73, Orchard Close,
Kingsbridge, Devon’and ask them to repeat and try to remember.
The name and address were changed to
‘Katona Péter, Tavasz utca 42., Gyöngyös,
Heves megye’.
Hungarian
7. Memory –Retrograde: Ask for the name of the current Prime Minister. Asked for the name of the current President. Spanish
10. Language –Repetition: Say the word caterpillar. Caterpillar was changed to Colomennod
(Pigeons).
Welsh
11. Language –Repetition: Say the proverb ‘A stitch in time saves nine’and ask them
to repeat.
The proverb was changed to ‘The orchestra
played and the audience applauded’
Hebrew
12. Language –Naming: Show image of kangaroo and ask them to name each. The image was changed to a goat. Hindi
13. Language –Comprehension: Ask to point to ‘the one which is a marsupial’, from
the 12 images provided.
The question was changed to point to ‘the
one which flies’.
Egyptian
Arabic
14. Language –Reading: Ask them to read the word height. Height was changed to Zamarzniety (Frozen). Welsh
17. Visuospatial Abilities: Ask them to identify the fragmented English letters. The letters were changed to Hindi alphabet. Hindi
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1) How the question has been previously culturally
adapted with the steps undertaken.
2) Examples compiled from publications and the
questionnaires, citing the respective languages and
adaptors of the ACE-III
3) The rationale behind adapting the question and
choosing the adapted replacement.
Step 4: implementation of the guidelines
Our focus groups had 12 voluntary participants, five fe-
male (41%) and seven male (59%), from ages 61–75 years
(M = 66.67, SD = 6.44), from the Greater Manchester
area. (See Table 4for a breakdown of participant demo-
graphics). Seven participants were married, three were
widowed, and two did not disclose. Six were retired,
three were housewives, two were unemployed, and one
did not disclose. Participants came from varied socio-
economic backgrounds, across a range of educational
backgrounds.
Through our proposed suggestions for each question
of the ACE-III Urdu, developed through the use of the
guidelines, we determined questions 5b, 8, 9, 15a, 15b,
Fig. 3 An example page of the guidelines
Table 4 Demographic details of focus group participants
PI Age Level of Education First Language Other
Language
1F 60s X Punjabi Urdu, English
2F 70s 10th Year Punjabi Urdu
3F 60s FA Punjabi Urdu
4F 60s FA Punjabi Urdu
5F 70s None Punjabi Urdu
1 M 70s Graduate Punjabi Urdu, English
2 M 60s BA Urdu English
3 M 70s MA Punjabi Urdu, English, Arabic
4 M 70s GCSEs Urdu English
5 M 60s GCSEs Urdu Punjabi, English
6 M 60s X
Graduate
Punjabi Urdu, Italian, English
7 M 70s Graduate Punjabi Urdu, English, Persian
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Table 5 ACE-III Urdu items determined from focus groups and consensus meeting
Suggestions Justification
1: Attention
i. Ask the question ‘These days which of the four seasons is it?’
ii. ‘Hospital’and ‘county’will be spelt using Urdu letters.
iii. Only accept dates in the English calendar.
Participants and experts agreed with the proposed suggestions
developed with rationale from the guidelines.
2: Attention
i. ‘Lemon’is directly translated into Urdu.
ii. ‘Key’is replaced with ‘bell’, spelt using Urdu letters.
iii. ‘Ball’is directly translated into Urdu
Participants and experts agreed with the proposed suggestions
developed with rationale from the guidelines for i and ii.
For iii, participants said ‘bell’and ‘ball’sound far too alike and it was
decided that ‘ball will be directly translated as the Urdu word for ‘ball’is
also one syllable.
3: Attention
Use the word ‘minus’, spelt using Urdu letters and the Urdu translation
for ‘take away’.
Participants and experts agreed with the proposed suggestions
developed with rationale from the guidelines.
4: Memory
Refer to Question 2: Attention Refer to Question 2: Attention
5a: Fluency (Letters)
Replace the letter ‘P’with the Urdu letter چ(chay). Participants agreed with both proposed suggestions developed with
rationale from the guidelines.
Between the letters چ(chay) and گ(gaaf), the former was then chosen
by experts after debate due to its unique sound as the latter could be
mistaken for the similar sounding letter ک(kaaf).
6: Memory
i. The first name Haroon is used. The last name Butt is used.
ii. The original ACE-III address will be retained and spelt using Urdu
letters.
Participants agreed with all the proposed suggestions developed with
rationale from the guidelines.
The name Haroon Butt was settled upon by the experts due to it
retaining the sounds and length of the original name, Harry Barnes.
7: Memory
i. The first, second and third question of the original ACE-III, ‘Name of the
current Prime Minister’,‘Name of the first female Prime Minister’and
‘Name of the USA president’are retained.
ii. The fourth question will be replaced with ‘Name of the princess who
died in a car crash in the 1990s’.
Participants agreed with the proposed suggestions developed with
rationale from the guidelines.
The second question was retained according to the guidelines, despite
what was said in the focus groups. Experts ruled that British Urdu
speaking elderly should be aware of the first female Prime Minister of the
UK due to her prominence. She would have been Prime Minister at the
time when many of the elderly would have initially immigrated to the
UK and would therefore know of her.
The fourth question was replaced with a new suggestion by the experts.
Despite following the rationale of the guidelines ‘Name of the British
currency’and ‘Name of the city where (a ‘Wonder of the World’)is
located’were deemed too easy. It was also agreed that these
replacements do not retain the conceptual equivalence of the question.
‘Name of the princess who died in a car crash in the 1990’retains the
concept, relating to a well know historical death relevant to the UK.
10: Language
i. ‘Eccentricity’is replaced with گوشگزار
ii. ‘Unintelligible’is replaced with
نشیبوفراز
iii. The Indian Urdu replacements for ‘caterpillar’and ‘statistician’are
retained.
Participants agreed with the proposed suggestions developed with
rationale from the guidelines.
‘Eccentricity’was replaced with a new suggestion by experts as the
words proposed were deemed too easy in comparison to the original
counterparts.
11: Language
The first saying, ‘All that glitters is not gold’, is translated into Urdu. The
second saying is replaced with the saying that translated to ‘You cannot
clap with one hand’.
Participants and experts agreed with the proposed suggestions
developed with rationale from the guidelines.
12: Language
i. Spoon is retained.
ii. Book is retained.
iii. Kangaroo is replaced with a goat.
iv. Penguin is replaced with a peacock.
v. Anchor is replaced with scissors.
Participants agreed with the proposed suggestions developed with
rationale from the guidelines.
For iii, experts decided that though sheep are more common in the UK,
British Urdu speakers would be familiar and able to recognise a goat.
For iv, experts selected a peacock as British Urdu speakers would be
Waheed et al. BMC Psychiatry (2020) 20:492 Page 9 of 13
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15c and 16 would suffice with a direct translation. The
remaining questions required further cultural adaptation
that were deliberated over during these focus groups
(See Additional file 3for the proposed suggestions, de-
veloped using the guidelines).
Our consensus meeting was attended by two experienced
old age psychiatrists who were both bilingual British Pakis-
tanis. They had lived in both the UK and Pakistan and were
familiar with the cultures of both countries. They were also
both involved in clinical and research work relevant to
South Asian populations and were knowledgeable about
cognitive assessments, the ACE-III and the translation and
cultural adaptation of cognitive tests.
Step 5: developing the ACE-III Urdu
The suggestions finalised within this consensus meeting
and incorporated to form the ACE-III Urdu [19] can be
seen in Table 5.
Discussion
In this paper we detailed the methods involved in devel-
oping a set of guidelines to culturally adapt a specific
cognitive test; in this instance, the ACE-III. Following
this we also demonstrated how these guidelines can be
implemented to develop a cultural adaptation of the test
it was designed for, for a specific target population.
The combination of the systematic review and adap-
tors’feedback provided us with detailed information on
the cultural adaptation of the ACE-III, which was used
to develop question-by-question guidelines. These
present culturally adapted versions of questions of the
ACE-III, backed up by rationale.
We could potentially have incorporated more cultures
and languages through translators but due to limited re-
sources we were unable to produce questionnaires for 6
of the existing adaptations. We also had a poor return
rate of questionnaires (35%), reducing the amount of
additional information we could have received and
Table 5 ACE-III Urdu items determined from focus groups and consensus meeting (Continued)
Suggestions Justification
vi. Camel is retained.
vii. Harp is replaced with a dohl.
viii. Rhino is replaced with a bear.
ix. Barrel is replaced with a suitcase.
x. Crown is replaced with a cap.
xi. Crocodile is replaced with a tortoise.
xii. Accordion is replaced with a trumpet.
more familiar with it as opposed to a parrot. For v, experts settled on
scissors as they are a common household object.
For vii, experts selected a dohl due to familiarity with it in the culture.
For viii, experts proposed the new suggestion of a bear to replace the
rhino as it is a better known wild animal but still unique in the UK.
Experts ruled that a lion could be confused with other big cats such as a
tiger and a monkey is not as relative to the cultural context of the UK.
For ix, experts selected a suitcase as it is a form of container with a
specific purpose.
For x, experts proposed the new suggestion of a cap as it is a better
known form of headwear.
For xi, experts proposed the new suggestion of a tortoise, because it is a
better known wild animal that would be better recognised by the British
Urdu speaking elderly.
For xii, a trumpet was selected out of the proposed instruments by
participants from the focus groups as it was considered the most
uniquely shaped and easily recognisable by British Urdu speaking elderly.
13: Language
The following questions were asked regarding the images: ‘Which one is
related to the head’,‘Which one is found in the desert’,‘Which one has a
shell on it’and ‘Which one is related to travel’.
All questions were developed by the authors NM and WW according to
the images that were finalised, following the guidelines.
Participants and experts agreed with the proposed questions.
14: Language
The words used in the Indian Urdu ACE-III were retained. Participants and experts agreed with the proposed suggestions
developed with rationale from the guidelines
17: Visuospatial Abilities
The letters ﻭ،ﻡ،ﯼ،ﺍwere selected. Participants and experts agreed with the proposed suggestions
developed with rationale from the guidelines
18: Memory
Refer to Question 6: Memory. Refer to Question 6: Memory.
19: Memory
Refer to Question 6: Memory.
The names Jamal Butt and Haroon Khan replaced the original names for
recognition.
Refer to Question 6: Memory.
Participants agreed with the proposed suggestions developed with
rationale from the guidelines.
The alternative names chosen by the experts retained the length,
familiarity and number of syllables.
Waheed et al. BMC Psychiatry (2020) 20:492 Page 10 of 13
Content courtesy of Springer Nature, terms of use apply. Rights reserved.

compiled into the guidelines. Since our review and this
research more cultural adaptations of the ACE-III have
also been released that could not be included at this
time.
Therefore we must acknowledge that the usefulness of
these guidelines, and any guidelines for cognitive tests
developed via these methods, is dependent on how many
language and cultural versions of that test have been de-
veloped and how accessible these versions are. They are
also limited by how many current adaptors of these ver-
sions provide rich data on the rationale behind culturally
adapting questions that is often not conveyed through
publications alone.
However, the methods for forming these guidelines
are designed to allow for necessary updates as more in-
formation on cultural adaptation is acquired. In this way
newer additions can be made by simply adding in any
additional cultural adaptation steps found from new
publications on adaptations of the ACE-III. The inclu-
sion of feedback from adaptors also ensures we are not
limited strictly to just published information.
In addition, we were still able to account for 22 inter-
national languages and cultural contexts in our guide-
lines. Through the frequency of cultural adaptation
across questions, evidenced in our systematic review
[30] and from the feedback of the adaptors, we were also
able to determine which questions would most likely re-
quire cultural adaptation and which could suffice with a
simple translation. The guidelines highlight this. With
the accompanying rationale these guidelines would allow
future adaptors to conduct their own cultural adaptation
of the ACE-III and we have demonstrated this through
our cultural adaptation of the ACE-III for a British Urdu
speaking population.
While utilising the guidelines to develop potential
questions for an ACE-III Urdu [32] we acknowledged
British South Asians’preferences for certain English
words that are spelt with Urdu letters, such as,
‘county’,‘bell’and ‘ball’, as opposed to translating
words into Urdu. This is attributed to the mixing of
English and Urdu that occurs within British Urdu
speaking communities. We also noted the influence of
the structure in which sentences are presented in
Urdu, and proposed the rephrasing of questions to
avoid confusion. This can be seen with the elabor-
ation of ‘What is the season?’to ‘Which of the four
seasons is it?’due to the Urdu word for weather and
season being the same.
We presented these suggestions within our focus
groups, allowing us to gather feedback from men and
women of a vast array of educational backgrounds
within the British Urdu speaking community. Through-
out the discussion participants were able to follow the
rationale provided by the guidelines when proposing
suggestions for the ACE-III Urdu. There was a notable
insistence on cultural adaptation for questions assessing
memory and language, with little focus on fluency and
visuospatial abilities. This is not to say that questions of
fluency and visuospatial abilities may not require cul-
tural adaptation, only that for this target population they
did not.
Following this we conducted a consensus meeting with
experts to review suggestions for the ACE-III Urdu pro-
posed during the focus groups. There was a general con-
sensus with the suggestions proposed, barring a few
items. Within ‘Question 2: Attention’experts preferred
‘ball’be translated directly into Urdu and in the case of
‘Question 7: Memory –Retrograde’experts decided to
retain three questions as they were. The proposed sug-
gestions were deemed too easy and the original ques-
tions were at a specific level of difficulty that was
required to measure retrograde memory.
Overall this demonstrated the usability of the guide-
lines and their role in developing cultural adaptations
of cognitive test questions alongside both potential
user and clinical expert feedback. These methods also
allowed us to develop a familiarity for the cognitive
test we were working with, and the intricacies of the
various test questions, in a way that general guide-
lines do not allow.
Through our methods we also developed the first ver-
sion of the ACE-III Urdu that can be used in the cultural
context of the UK. As mentioned earlier the next step
was to conduct a cultural validation, which assessed the
ACE-III Urdu’s understanding and acceptability across
older Urdu speaking British South Asians [32]. Further
efforts will now be undertaken to determine its perform-
ance in the detection of dementia through a psychomet-
ric validation.
Overall, these methods can be replicated for any cog-
nitive test to develop guidelines for adaptation specific
to that test. Similarly, they can also be implemented in
the same manner for any target population.
Conclusions
The guidelines are the first of their kind, and we have
provided an in depth account of the approach we
undertook to develop them and implement them.
This was not restricted to published literature but in-
corporated the first hand experiences of cultural
adaptation by existing adaptors of the ACE-III. This
accounted for adaptations that may not have had cor-
responding publications. Furthermore, instead of ad-
hering to general guidelines on cultural adaptation,
developing guidelines designed for the cultural adap-
tation of the ACE-III allowed for familiarity with its
individual questions.
Waheed et al. BMC Psychiatry (2020) 20:492 Page 11 of 13
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These guidelines for the ACE-III can now be imple-
mented in the same manner we conducted for other
language and cultural groups, with the added incorp-
oration of potential user and clinical expert feedback.
The implications of this methodology can also be
taken forward to develop guidelines in the same man-
ner for other existing cognitive tests. This would help
to alleviate issues with mismatched culture across di-
verse populations that we currently see within health-
care and research settings.
Supplementary information
Supplementary information accompanies this paper at https://doi.org/10.
1186/s12888-020-02893-6.
Additional file 1: Supplementary Material- Appendix A1. Sample
Questionnaire- “Cultural adaptation process of the Italian ACE-III”.
Additional file 2: Supplementary Material- Appendix A2. The first
edition of our guidelines on translating and culturally adapting the ACE-
III.
Additional file 3: Supplementary Material- Appendix A3. Table on
‘Proposed ACE-III questions developed from the guidelines’.
Abbreviations
UK: United Kingdom; 6 CIT: six item cognitive impairment test; TYM: Test
Your Memory; MMSE: Mini Mental State Examination; MoCA: Montreal
Cognitive Aessment; ACE-III: Addenbrooke’s Cognitive Examination Version III;
USA: United States of America; ACE-R: ACE Revised; MCAR: Manchester
Cultural Adaptation Reporting Questionnaire; NeuRA: Neuroscience Research
Australia
Acknowledgements
Alex J Mitchell, Andrew J Larner, Emilia Sitek, Gwerfyl Roberts, JP Newman,
Jordia MA Antem, Norbert Kovacs, Shailaja Mekala, Shuvarna Alladi and Tarik
Qassem in providing completed questionnaires.
Ms. Nadia Siddiqui, who acted as our liase for recruitment, Women’s Voices
and the Greater Manchester Pakistani Association (GMPA).
Authors’contributions
The research question was formulated and the study designed by WW and
NM. The study was carried out by NM, with assistance from AM and MP,
supervised by WW. The qualitative data analysis was conducted by NM, with
assistance from MWW, supervised by WW. NM wrote the manuscript. All
authors read ad approved the manuscript.
Funding
There were no sponsorship or funding arrangements relating to this
research.
Availability of data and materials
Not Applicable.
Ethics approval and consent to participate
Ethical approval was waived for this research by the University of Manchester
Research Ethics Committee (UREC). This was because the portion of the
research requiring participation of members of the public was an act of
public involvement for research on developing an Urdu version of the ACE-III
that was used in a cultural validation study [19]. However, informed consent
was still obtained from all participants through a signed consent form.
Consent for publication
Not Applicable.
Competing interests
The authors declare that they have no competing interests.
Author details
1
Centre for Primary Care and Health Services Research, The University of
Manchester, Suite 8, 5th Floor, Williamson Building Oxford Road, Manchester
M13 9PL, UK.
2
The University of Leicester, Leicester, UK.
3
Greater Manchester
Mental Health NHS Foundation Trust, Salford, UK.
Received: 13 August 2019 Accepted: 24 September 2020
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