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Journal of Intellectual Disability Research doi: 10.1111/jir.12173

385
volume 59 part 4 pp 385–395 april 2015

Validation of the Chinese Version of the Dementia

Screening Questionnaire for Individuals with Intellectual
Disabilities (DSQIID-CV)
R. S. Y. Li,1 H. W. M. Kwok,2 S. Deb,3 E. M. C. Chui,4 L. K. Chan5 & D. P. K. Leung1
1 Occupational Therapy Unit, Tung Wah Group of Hospitals Jockey Club Rehabilitation Complex, Hong Kong
2 Leighton Centre, Hong Kong
3 Department of Medicine, Division of Brain Sciences, Centre for Mental Health, Charing Cross Hospital, Imperial College
London, London, UK
4 Department of Psychiatry, Queen Mary Hospital, Hong Kong
5 Kwai Chung Hospital, Hong Kong

Abstract taken care of the participants continuously for the

past 6 months were invited to complete the
Background An increasing number of people with
DSQIID-CV. All participants were examined by
intellectual disabilities (ID) are at risk of developing
qualified psychiatrists to determine the presence or
age-related disorders such as dementia because of a
absence of dementia.
dramatic increase in life expectancy in this popula-
Results Two hundred people with ID whose age
tion in the recent years. There is no validated
ranged between 40 and 73 years (mean 51 years,
dementia screening instrument for Chinese people
SD = 7.34 years) were recruited to the study. A
with ID. The Dementia Screening Questionnaire
clinical diagnosis of dementia was established in 13
for Individuals with Intellectual Disabilities
participants. An overall total score of 22 as a
(DSQIID) was reported to be a valid, user-friendly,
screening cut-off provided the optimum levels of
easy-to-use observer-rated instrument. It was devel-
specificity (0.995) and sensitivity (0.923). The
oped in the UK and has good psychometric proper-
DSQIID-CV showed good internal consistency
ties. Validation of a Chinese version of the DSQIID
(alpha = 0.945) for all its 53 items, and excellent
will facilitate its application among the Chinese
test-retest reliability (0.978, n = 46) and inter-rater
population.
reliability (1.000, n = 47). Exploratory factor analy-
Method The DSQIID was translated into the
sis resulted in a four-factor solution explaining 45%
Chinese version (DSQIID-CV). By purposive sam-
of the total variance.
pling, service users with ID aged 40 years or over
Conclusions The DSQIID-CV is shown to have
were recruited through two large centres serving
robust psychometric properties. It is the first valid
adults with ID in Hong Kong. Carers who had
and reliable dementia screening instrument for
Chinese adults with ID.
Correspondence: Ms Rebecca Suk Yin Li, Occupational Therapy
Unit, Tung Wah Group of Hospitals Jockey Club Rehabilitation
Keywords Chinese version, dementia, DSQIID-
Complex, 4 Welfare Road, Aberdeen, Hong Kong (e-mail: CV, intellectual disabilities, screening instrument,
rebecca.li@tungwah.org.hk). validation

© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
 Journal of Intellectual Disability Research
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R. S. Y. Li et al. • Validation of the Chinese version of the DSQIID (DSQIID-CV)
Introduction
It has been reported that the prevalence of dementia
of Alzheimer’s type (DAT) is much higher in
people with Down’s syndrome (DS), which tends to
manifest relatively early in their lives compared with
the general population (see review by Strydom et al.
2007, 2009; Kannabiran & Deb 2010; Zigman
2013). An increased prevalence rate of dementia
among people with intellectual disabilities (ID) in
general (with or without DS) compared with the
general population has also been reported (Patel
et al. 1993; Cooper 1997; Strydom et al. 2007,
2013a,b). However, Silverman et al. (2014) in a
recent article questioned this assumption. Clinical
diagnosis of dementia in individuals with ID
remains difficult particularly at the early stage
(Prasher 2005; Deb & McHugh 2010; Silverman
et al. 2014). Screening methods used for the early
detection of dementia among the non-ID general
population are not suitable for people with ID
because of floor effects (Palmer 2006) and the diffi-
culty of standardising a cut-off threshold due to
high inter-individual variability in premorbid cogni-
tive and communication abilities among people with
ID (Deb & Braganza 1999). Manifestation of psy-
chiatric and neurological disorders including DAT
could be very different in people with ID compared
with the general population (Deb et al. 2001;
Hemmings et al. 2013). For example, a number of
studies have reported that whereas in the general
population, frontal lobe symptoms are usually the
late manifestations of dementia, they tend to appear
early in the dementing process in people with DS
(Deb et al. 2007a).
As in the general population, increasing age and
some genetic predispositions act as risk factors for
DAT in people with DS (Aylward et al. 1997; Deb
et al. 2000). Autopsy studies supported by
neuroimaging studies (Mann 1988, 1993; Deb et al.
1992; Haier et al. 2008) have shown an almost
universal presence of Alzheimer’s neuropathology
among adults with DS over the age of 45 years.
Clinically, however, dementia is not universally
manifested in this population (Deb 2003; Prasher
2005). Two main approaches taken for screening
or making a diagnosis of dementia in people with
ID namely, are either completion by carers of
observer-rated behaviour questionnaires and/or
© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
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volume 59 part 4 april 2015
face-to-face neuropsychological tests (see review by
Deb & McHugh 2010). Some of the early symp-
toms of dementia may be subtle or may present as
an exacerbation of the existing behavioural traits
or manifest differently in people with ID than in
the non-ID general population. Only carers will
notice these early and sometimes, unusual changes
in the person’s behaviour and only by asking
carers can we ensure that such symptoms are
included in any case detection instrument. There-
fore, an informant-rated instrument is ideal for
screening or diagnostic purposes among adults
with ID. However, these observer-rated instru-
ments should complement direct
neuropsychological tests and a face-to-face inter-
view with the person with ID where possible.
A number of direct neuropsychological tests
have been used to detect cognitive decline in
people with ID (see review by Burt et al. 2000;
Kannabiran & Deb 2010). However, direct
neuropsychological tests, including Mini Mental
State Examination (Folstein et al. 1975) could not
always be reliably used in this population, particu-
larly for people with moderate and severe ID.
Therefore, an observer-rated screening instrument
primarily based on the reporting of behavioural
changes following the onset of dementia is desir-
able for use among people with ID (Deb &
Braganza 1999). A questionnaire that is valid and
reliable, as well as easy-to-use, could help carers
to screen for dementia among people with ID. It
could also help to improve referrals to specialists
for a definitive diagnosis followed by treatment of
dementia. It is imperative to make an early diag-
nosis of dementia in people with ID because early
intervention helps with optimal care and enhances
awareness among carers and family members.
Besides, early and accurate detection is important
for the provision of good quality clinical care for
this population and to develop appropriate health
policy (Nieuwenhuis-Mark 2009). Therefore,
instruments for screening for dementia among
people with ID are crucial.
Among the observer-rated scales, Dementia Scale
for Down Syndrome (DSDS, Gedye 1995), the
Dementia Questionnaire for People with Learning
Disabilities (DLD, Evenhuis et al. 2007) formerly
the Dementia Questionnaire for People with Mental
Retardation (DMR, Evenhuis 1996) and the
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R. S. Y. Li et al. • Validation of the Chinese version of the DSQIID (DSQIID-CV)
Dementia Screening Questionnaire for Individuals
with Intellectual Disabilities (DSQIID, Deb et al.
2007b) are the most widely used. Problems with the
use of DSDS are that two informants have to be
interviewed by a trained chartered psychologist who
may not be always available; also, the terminologies
used and scoring system are very complicated. The
scale has not been published either in any peer-
reviewed journal. The DLD/DMR has shown low
reliability when completed by carers (Evenhuis et al.
2007) and it is not easy to determine the severity of
a person’s ID in a clinic, which is required to deter-
mine cut-off scores for dementia that are different
for different levels of ID.
Visser et al. (1997) followed up adults with DS in
a Dutch Institution with the Early Signs of Demen-
tia Checklist, and Dalton & Fedor (1997) have used
the Multi-dimensional Observation Scale for Elderly
Subjects. Neither has been properly validated for
use in people with ID. Some studies have used the
Adaptive Behaviour Scale (Nihira et al. 1974) to
estimate the rate of decline in adaptive behaviour in
adults with DS over a period of time (Collacott
et al. 1992). The Adaptive Behaviour Dementia
Questionnaire is a 15-item questionnaire used to
detect changes in adaptive behaviour and can be
used as a screening tool (Prasher et al. 2004). The
Modified CAMDEX-DS Informant Interview (Roth
et al. 1998; Ball et al. 2004) is also used to make a
diagnosis of dementia in people with ID. However,
this is more of a diagnostic tool rather than a
screening instrument and has been validated based
on a small number of people with ID who had a
diagnosis of dementia. The DSQIID has been
translated in many languages for worldwide use and
has also been adapted by the US National Task
Group-Early Detection Screen for Dementia
(Esralew et al. 2013).
However, there is no locally validated instrument
for screening for dementia in Chinese people with
ID. Therefore, a Chinese translation of the
DSQIID (DSQIID-CV) was made, which was vali-
dated among Chinese people with ID in Hong
Kong. In this paper, we have presented data from
that validation study. According to the results of the
Second China National Sampling Survey on Dis-
ability (Office of the Second China National
Sampling Survey on Disability (OSSD) 2007), the
estimated number of people with ID in China was
© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
volume 59 part 4 april 2015
9.88 million (Kwok et al. 2011). We anticipate that
DSQIID-CV will benefit this huge Chinese popula-
tion with ID.
Method
The original DSQIID (Deb et al. 2007b)
Deb et al. (2007b) developed the DSQIID, which
is divided into three parts; the first section asks
about the ‘best’ ability the person has or has had.
The second part contains 43 questions about
behaviours or symptoms that are usually associated
with dementia in adults with DS or ID. Each item
is scored on a 4-point scale: (1) always been the
case; (2) always, but worse; (3) new symptom; and
(4) does not apply. Items with a response of ‘does
not apply’ or ‘always been the case’ are scored 0,
and those with ‘always, but worse’ or ‘new
symptom’ are scored 1. This scoring system was
adopted to overcome the floor effect that affects
the existing dementia screening scales, which do
not score changes in behaviour. The third part of
the DSQIID contains 10 questions, all of which
are comparative; for example, ‘seems generally
more tired’ and ‘speaks (signs) less’. A response
of ‘yes’ is scored 1 and a response of ‘no’ is
scored 0.
The results show that a cut-off score of 20 has
sensitivity of 0.92 and a specificity of 0.97. There
were some adults with DS who scored above 20 but
did not receive a clinical diagnosis of dementia and
similarly there were some people who scored below
20 but had a clinical diagnosis of dementia. There-
fore, the score should be used as a rough guide.
The DSQIID is a screening instrument and not a
diagnostic tool, and should be used as such. In a
clinical setting the DSQIID is best used to explore
each item with the carer in more detail in order to
build up a clinical picture. The DSQIID should be
used in a prospective manner; however, certain
items may show floor effect as dementia progresses
thus giving a lower total score as time progresses.
Also, it is worth keeping in mind that there are
certain physical and psychological conditions that
may affect scoring of certain items. For example,
stroke will affect scoring on items on ‘walking and
gait’.
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R. S. Y. Li et al. • Validation of the Chinese version of the DSQIID (DSQIID-CV)
The Chinese translation
With permission from the original authors, the
DSQIID was translated into Chinese (DSQIID-CV)
by three occupational therapists who spoke both
Chinese and English fluently and were serving
adults with ID in Hong Kong. This Chinese version
was then back-translated into English by an inde-
pendent qualified translator. All three versions
(original, Chinese and back-translated English ver-
sions) were then compared by the three therapists.
An iterative process of translating the original
version into Chinese and then back-translating into
English was carried out until there was no signifi-
cant discrepancy among the three versions. To
evaluate whether the Chinese translation was appro-
priate, eight bilingual expert panellists, including
psychiatrist, occupational therapist, social worker,
lecturer of university/tertiary education institute
(occupational therapy, social work, special educa-
tion), were invited to comment on the scale. The
panel members’ experience of serving people with
ID and/or dementia ranged from more than five
years to 28 years. Questionnaires with the three ver-
sions were sent to each expert panelist individually
asking for recommendation/comments for appropri-
ate Chinese translation. All comments collected
from the eight expert panellists were studied by a
working group consisting of one psychiatrist and
five occupational therapists who were fluent in
Chinese and English and were serving adults with
ID. The Chinese version was revised accordingly
with minor alteration about the wordings of a few
items. This final Chinese version of the DSQIID
(DSQIID-CV) was then used for data collection.
The scoring system for the DSQIID-CV has
remained exactly the same as that of the original
DSQIID.
Sample selection
By purposive sampling, service users aged 40 or
above with ID were recruited through two large
centres serving adults with ID in Hong Kong, with
approval by the respective ethical boards. They
were the Tung Wah Group of Hospitals Jockey
Club Rehabilitation Complex and Psychiatric Unit
for Learning Disabilities of Kwai Chung Hospital.
Subjects who were diagnosed with major depres-
© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
volume 59 part 4 april 2015
sion, cerebrovascular accidents or other major neu-
rological disorders were excluded.
Development of the Chinese user guidelines
With consents from two participants’ families, two
relative carers were invited to complete the
DSQIID-CV for trial use of the questionnaire. Five
raters who were professional staff (occupational
therapist and nurse) also administered the
DSQIID-CV at the same time. Through discussion
by the five raters and the two carers, user guidelines
for the DSQIID-CV were written in Chinese to
help the carers and the raters of the scale to under-
stand the contents of the questionnaire and scoring
procedure. All raters and carers then consistently
used these guidelines when they administered and
completed the DSQIID-CV for data collection.
Data collection
With consents from the recruited participants’ fami-
lies (and the participants if they are mentally com-
petent to do so), carers who had taken care of the
participants continuously for the 6 months leading
up to the interview were invited to complete the
DSQIID-CV with the assistance of a rater who was
familiar with the administration of the question-
naire. The DSQIID-CV was administered again by
the same rater to the same carer with 1- to 2-week
interval to assess the test-retest reliability. For the
study of the inter-rater reliability, the questionnaire
was completed simultaneously by two informants
while it was administered by one rater. None of the
raters knew whether the participant had a clinical
diagnosis of dementia or not when administering
the questionnaire. Within 1 month of the
DSQIID-CV completion date, all subjects were
examined by qualified psychiatrists for the diagnosis
of dementia according to Diagnostic Criteria for
Psychiatric Disorders for Use with Adults with
Learning Disabilities (DC-LD), Royal College of
Psychiatrists (2001). All psychiatrists were blind to
the participants’ DSQIID-CV score when they
made the diagnosis.
Data analysis
Data were entered anonymously and analysed by
using the Statistical Package for the Social Sciences
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R. S. Y. Li et al. • Validation of the Chinese version of the DSQIID (DSQIID-CV)

Version 17.0 (SPSS 17, SPSS Inc., Chicago, IL,
USA).
Results
Demographic data
A total of 200 (57% male, 43% female) participants
whose age ranged from 40 to 73 years (mean 51
years, SD = 7.34) were recruited. The DSQIID-CV
was completed by their carers. All 200 participants
were examined by qualified psychiatrists. A diagno-
sis of dementia was established in 13 participants
(see Table 1), of whom four (31%) were male and
nine (69%) were female. The age of these 13 par-
ticipants ranged from 50 to 61 years (mean 55 years,
SD = 3.80) while that of the 187 (59% male, 41%
female) participants without dementia ranged from
40 to 73 years (mean 50 years, SD = 7.53). Those
with dementia were significantly older than those
without (P < 0.01) but no significant difference was
detected for the gender between the dementia and
non-dementia groups.
Among the participants with a diagnosis of
dementia, four (31%) had DS. Three (23%), six
(46%) and four (31%) participants in the dementia
group had severe, moderate and mild ID, respec-
tively (severe and profound ID were merged into
one single category of severe ID). Among the group
without dementia, 32 (17%) participants had DS.
The non-dementia group had 48 (26%), 112 (60%)
and 27 (14%) people with severe, moderate and
mild ID, respectively. Therefore, both dementia and
non-dementia groups included people with different
severity of ID, and with DS and without DS
(Table 1). No significant difference is found in the
proportion of participants with DS, and with differ-
ent severity of ID between the dementia and non-
dementia groups.
Psychometric properties
Content validity
The contents of the DSQIID were translated word
by word into Chinese with the same meaning as
those of the original version (as requested by the
original authors). With the aid of the user guide-
lines, all raters and carers indicated that they could
understand the contents of the DSQIID-CV.
Construct validity
Field (2005) suggested that the number of partici-
pants required for a principal component analysis
should be at least 3–4 times the number of items
included in the scale. Therefore, for 43 items in the
DSQIID-CV, minimum number of participants
required for a principal component analysis should
be at least 129 to 172. As we have recruited 200
participants in the study, we have decided to carry
out a principal component analysis. An initial prin-
cipal component analysis using varimax rotation
created 13 factors, which captured 72% of the total
variance. Exploratory factor analysis (Pallant 2007)
resulted in a four-factor solution explaining 45% of
the total variance (see Table 2). The last 10 items

Table 1 Demographic data of the

Dementia group (% Non-dementia group dementia and non-dementia groups
within the group) (% within the group)

No. of subjects 13 (100%) 187 (100%)

Male 4 (31%) 110 (59%)
Female 9 (69%) 77 (41%)
*Age range/mean/SD 50–61/55/3.80 years 40–73/50/7.53 years
With DS 4 (31%) 32 (17%)
Without DS 9 (69%) 155 (83%)
Severe ID 3 (23%) 48 (26%)
Moderate ID 6 (46%) 112 (60%)
Mild ID 4 (31%) 27 (14%)

* Participants in the dementia group were significantly older than those in the non-dementia
group (P = 0.005).

© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
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R. S. Y. Li et al. • Validation of the Chinese version of the DSQIID (DSQIID-CV)

Table 2 Factor analysis of the 43 DSQIID-CV items

Factor 1 Factor 2 Factor 3 Factor 4

Memory/ Mood Problem Impairment of
confusion change behaviours ADL skills

Initial eigenvalues 11.569 3.007 2.448 2.218

% Variance 26.904 6.993 5.692 5.159
26 Can’t recognise familiar persons 0.823
13 Can’t read 0.756
05 Needs help eating 0.725
14 Can’t write 0.712
10 Can’t follow simple instructions 0.712
06 Needs help using bathroom 0.677 0.302
27 Can’t remember names of persons 0.643 0.346
20 Can’t find way in familiar surroundings 0.613 0.458
02 Can’t dress without help 0.605 0.325
37 Does not know what to do with objects 0.555
11 Can’t follow more than one instructions 0.505 0.500
09 Can’t find words 0.485 0.311 0.348
17 Confused at night 0.478 0.384
03 Dresses inappropriately 0.425 0.353
22 Loses track of time 0.358 0.342
28 Can’t remember recent events 0.350 0.319 0.301 0.350
19 Wanders at night 0.337
21 Wanders 0.321
42 Fits/epilepsy –
30 Withdraws from persons 0.827
31 Loss of interest in hobbies/activities 0.793
29 Withdraws from social activities 0.778
32 Seems to go into own world 0.677
08 Does not initiate conversation 0.494
18 Sleeps during the day 0.462
16 Wakes at night 0.428 0.322
40 Appears depressed 0.419 0.311
15 Changed sleep pattern 0.361
12 Stops in the middles of a task 0.342
39 Appears anxious or nervous 0.671
33 Obsessive or repetitive behaviour 0.611
36 Puts familiar things into wrong places 0.608
43 Talks to self 0.549
35 Losses objects 0.515
34 Hides or hoards objects 0.511
04 Undresses inappropriately 0.462
41 Shows aggression 0.313 0.384
24 Unsteady walk/loses balance 0.758
25 Can’t walk unaided 0.701
23 Not confident to walk over small cracks 0.694
01 Can’t wash/bathe without help 0.302 0.554
07 Incontinence including accidents 0.311 0.408
38 Appears insecure 0.374 0.311 0.405

Items were grouped under the same factor according to the respective highest factor loading values (bolded) and relevance to that factor.
The lower loading values were also included but not highlighted in bold under each factor.

© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
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 Journal of Intellectual Disability Research volume 59 part 4 april 2015
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R. S. Y. Li et al. • Validation of the Chinese version of the DSQIID (DSQIID-CV)

were excluded from the factor analysis because

these items were rated on a 2-point scale rather
than the other 43 items that were rated on a 4-point
scoring system.
Factor 1 is similar to that of the original version
that most items involve symptoms of memory
deficit and confusion (Deb et al. 2007b). Factor 2
comprises primarily symptoms that are associated
with mood change. Factor 3 includes primarily
symptoms relating to problem behaviours such as
obsessive behaviour and aggression. Factor 4 con-
sists of symptoms that can be grouped as impair-
ment of activities of daily living (ADL) skills. From
the computed results, the item ‘Fits/epilepsy’ could
not be grouped to any factor initially but it is
related most to factor 1 and thus is grouped
accordingly.
Though there is some overlap, the factors appear
to reflect different clinical symptoms. Factor 1 con-
tributes about 27% of the total variance, whereas
the remaining three factors contribute less than 18%
Area Under the Curve
(each contributes less than 7%). This result shows Test Result Variable(s): DSQIID-CV Total Score
that the items comprising factor 1 are more impor- Asymptotic 95% Confidence Interval
Standard Asymptotic
tant in screening for dementia among people with Area Error (a) Significance (b) Lower Bound Upper Bound
ID than the items in other factors. This is very .988 .009 .000 .000 1.000
similar to the results found in the development of The test result variable(s): DSQIID-CV total score has at least one tie between the
the original DSQIID (Deb et al. 2007b). positive actual state group and the negative actual state group. Statistics may be
biased.
a) Under the nonparametric assumption
b) Null hypothesis: true area = 0.5
Internal consistency
Figure 1 Characteristics of the receiver operating characteristic
The Cronbach’s α is 0.945 for all 53 items of the
(ROC) curve for the DSQIID-CV scores calculated against the
DSQIID-CV. diagnosis of dementia among people with intellectual disabilities
(n = 200).
Criterion-related validity
The total score on the DSQIID-CV, which could
specificity of 0.995 and sensitivity of 0.923 (both
be from 0 to maximum of 53, was compared with
were the highest other than 1.000). The likelihood
the psychiatrists’ diagnosis of the presence or
ratio positive and negative would be 185 and 0.08,
absence of dementia for every individual subject.
respectively. This means that a positive diagnosis of
The receiver operating characteristic (ROC) method
dementia is 185 times more likely in a person with
was used to calculate the best fit between specificity
dementia than in one without. Similarly, a negative
and sensitivity. The optimum cut-off score was
diagnosis of dementia is 0.08 times more likely or
found to be 22 with a large area under the ROC
13 times less likely in a person with dementia than
curve of 0.988 (Fig. 1). One out of 13 participants
without.
who had a clinical diagnosis of dementia scored less
than 22 on the DSQIID-CV. On the other hand
Reliability
one out of 187 participants who did not have a
clinical diagnosis of dementia scored more than 22 The intraclass correlation for test-retest reliability
on the DSQIID-CV. Therefore, the use of an (n = 46) is 0.978 (P < 0.05, >80% power) and for
overall score of 22 as a screening cut-off resulted in inter-rater reliability (n = 47) is 1.000 (P < 0.05,

© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
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R. S. Y. Li et al. • Validation of the Chinese version of the DSQIID (DSQIID-CV)

>80% power). A total of three raters were involved in the two studies. The diagnosis of dementia in the
for both studies of test-retest and inter-rater original version was made according to the diagnos-
reliabilities. tic criteria of the modified ICD-10 (Aylward et al.
1997), whereas in our study, we used those of the
DC-LD (Royal College of Psychiatrists 2001). The
Discussion DC-LD is an improved classificatory system that
reflects the consensus opinion among psychiatrists
The purpose of this study is to develop and validate
specialising in ID in the UK. It was developed in
a user-friendly observer-rated dementia screening
recognition of the limitations of the ICD-10 manual
questionnaire with strong psychometric properties
as applied to people with ID. While all participants
for adults with ID in Chinese populations, not
on the study of the original version were people
exclusive to the adults with DS. Like the DSQIID,
with DS, most participants in the current study
the DSQIID-CV is easy to use and takes a relatively
were not, though participants of both studies were
short time (about 15–20 min) to complete. The
adults with ID. The cut-off score of 22 applies to
questionnaire can be completed by carers anywhere
adults with all severity of ID and with or without
such as residence, day activity centre or clinic. The
DS.
questions are simple and easy to understand, and
Although the original DSQIID has been trans-
the scoring system is simple and unambiguous.
lated in many languages for worldwide use, as far as
With the aid of the administration guidelines
we know, so far, only data based on the Italian
(including the scoring method) written in Chinese,
translation of the DSQIID-I have been published
raters can help carers with various educational levels
(Gomiero et al. 2014). Like the DSQIID-CV and
to understand the contents of the questionnaire and
the original DSQIID, the DSQIID-I has also shown
to complete the DSQIID-CV easily. Psychometric
good psychometric properties. The DSQIID-CV is
properties of the DSQIID-CV are good and are
the only dementia screening instrument validated
similar to those of the original DSQIID. A compari-
for use among Chinese adults with ID. As screening
son of the psychometric properties of these two
helps early diagnosis of dementia, which leads to
questionnaires has been summarised in Table 3.
early intervention for optimal care, we recommend
The slightly higher cut-off score (22) compared
use of this validated screening tool to screen for
with that of the original version (20) might be due
dementia among all older adults with ID in Hong
to the difference in criteria used for the diagnosis of
Kong and in other Chinese populations. Besides, as
dementia and the different sampling methods used
suggested by Deb et al. (2007b), it is probably best
to use this instrument at regular intervals to identify
Table 3 Comparison of the psychometric properties of the any changes in score over a period of time. In addi-
DSQIID and DSQIID-CV tion, the establishment of the precise statistics about
people with both ID and dementia has implication
DSQIID DSQIID-CV for health care policy for this population, such as
Factor 4 factors, 4 factors, government funding to both public and non-
analysis 57% total 45% total government organisations who develop and provide
results variance variance
services to people with both ID and dementia. The
provision of timely services will hopefully improve
Cronbach’s α 0.91 0.945 the quality of life for this vulnerable population as
Cut-off score 20 22
their life expectancy continues to increase.
Specificity 0.97 0.995
Sensitivity 0.92 0.923 However, inclusion of more adults with a clinical
Likelihood ratio positive 31 185 diagnosis of dementia made by clinicians who are
Likelihood ratio negative 0.08 0.08 blind to the DSQIID-CV score is necessary to
Intraclass correlation 0.95 0.978 strengthen its diagnostic accuracy. As is the case in
(test-retest)
the general population, screening tools for dementia
Intraclass correlation 0.9 1.000
(inter-rater) among ID individuals need to be used at regular
intervals over a period of time (at least 6 months) to

© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
 Journal of Intellectual Disability Research
393
R. S. Y. Li et al. • Validation of the Chinese version of the DSQIID (DSQIID-CV)
identify a change in score. The sensitivity of the
DSQIID-CV to change in symptoms over time has
to be assessed in a future study. It is also important
to remember that the DSQIID-CV is a screening
instrument and not a diagnostic tool. A diagnosis of
dementia will depend on multiple sources of infor-
mation including direct examination of the person
with ID and information gathered from their carers.
Therefore, a definitive diagnosis has to be made by
appropriately trained clinicians if the DSQIID-CV
score raises suspicion about possible dementia. In
that respect, it is worth keeping in mind that the
cut-off score of 22 is just a rough guide and not a
definitive indicator for the presence or absence of
dementia. It is also worth keeping in mind that
there are many conditions that may lead to cogni-
tive decline in a person with ID and some of which
will affect the DSQIID-CV score. They have to be
carefully considered. Conditions that may mimic
dementia in people with ID include (1) depression,
(2) sensory impairments, (3) endocrine disorders
such as hypothyroidism, (4) delirium, (5) brain
damage/injury, (6) use of high-dose antipsychotics,
medications with anticholinergic adverse effects,
antiepileptic drugs and multiple medications, (7)
neurodegenerative disorders like Parkinson’s
disease, (8) cerebral infections such as encephalitis,
meningitis, Creutzfeldt–Jakob disease, (9) anaemia,
chronic infection, nutritional deficiency including
vitamin B12, folate deficiency, (10) impact of life
events (bereavement, change in environment, move
from home, loss of day activities, etc.) and (11)
physical and emotional abuse (Dodd et al. 2009),
etc.
It is also worth noting that considerable debate
exists regarding the overlap of age-related cognitive
decline, mild cognitive impairment and dementia in
the general population as well as in people with ID
(Silverman et al. 2014). Studies that have mapped
out cognitive decline among adults with ID and
with and without DS using prospective design
(Devenny et al. 1996, 2000; Carr 2005) show a
trend of relatively greater decline in verbal abilities
compared with performance abilities, than has been
shown in the general population. The principle that
the diagnosis of dementia requires evidence of a
progressive deterioration in memory and other cog-
nitive functions and in daily living skills is the same
for individuals with ID as it is for the non-ID
© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
volume 59 part 4 april 2015
general population. Aylward et al. (1997), and
Strydom et al. (2009) have set out a model for best
practice in diagnosis. They recommend that a base-
line of cognitive functioning is established before
the age of 35 years and then reviewed annually. If a
decline in functioning is discovered on review then
a full investigation should be carried out to establish
a diagnosis. They suggested that a person-centred
approach should be used to provide appropriate
care for the individual and their carers.
Acknowledgements
We would like to thank the service users and their
family members and carers for their help and par-
ticipation in this study. Special thanks go to all who
have contributed to the translation, development of
the user guidelines, data collection and other rel-
evant work for the study, particularly our research
team members including Dr Ka Hin Lau, Dr King
Kong Chun, Ms Cindy H. F. Sung, Ms Yuen Fung
To, Ms Queenie C. Y. Kwan and Ms Medina W.
C. Lau. Last but not least, we thank Tung Wah
Group of Hospitals Jockey Club Rehabilitation
Complex and Psychiatric Unit for Learning Disabil-
ities of Kwai Chung Hospital for their strenuous
support to make this collaboration meaningful and
successful.
Conflict of interest
None.
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Accepted 3 November 2014