nielsen2015

RESEARCH ARTICLE
Knowledge and perceptions of dementia and Alzheimer’s
disease in four ethnic groups in Copenhagen, Denmark
T. Rune Nielsen1 and Gunhild Waldemar1
Danish Dementia Research Centre, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark
Correspondence to: T. Rune Nielsen, E-mail: [email protected]
Objective: Older
people from ethnic minorities are underrepresented in dementia care. Some of the determinants of access to care are knowledge and perceptions of dementia, which may vary between ethnic groups in the population. The aims of this study were to compare knowledge and perceptions of
dementia and Alzheimer’s disease (AD) among four ethnic groups in Copenhagen, Denmark, and to
assess the influence of education and acculturation.
Methods: Quantitative survey data from 260 participants were analyzed: 100 native Danish, and 47 Polish, 51 Turkish, and 62 Pakistani immigrants. Knowledge and perceptions of dementia and AD were
assessed with the Dementia Knowledge Questionnaire (DKQ) supplemented with two questions from
the Alzheimer’s Disease Awareness Test (ADAT). Knowledge and perceptions of dementia and AD in
the four groups were compared, and the influence of education and acculturation was assessed.
Results: Group differences were found on the DKQ total score as well as all sub-domains. Turkish and
Pakistani people were most likely to hold normalizing and stigmatizing views of AD. Level of education
and acculturation had limited influence on dementia knowledge, accounting for 22% of the variance at
most and had only minor influence on perceptions of AD.
Conclusions: Lacking knowledge and certain perceptions of dementia and AD may hamper access to
services in some ethnic minority groups. Ongoing efforts to raise awareness that dementia and AD
are not part of normal aging, particularly among Turkish and Pakistani communities, should be a high
priority for educational outreach. Copyright # 2015 John Wiley & Sons, Ltd.
Key words: dementia; Alzheimer’s disease; knowledge; ethnic minority; acculturation; education
History: Received 30 January 2015; Accepted 8 May 2015; Published online 4 June 2015 in Wiley Online Library (wileyonlinelibrary.com)
DOI: 10.1002/gps.4314
Introduction
In Denmark, dementia is estimated to affect 7% of
people older than 60 years (Prince et al., 2013). Because of demographic aging, the number of people
affected by dementia will increase significantly over
the next 20 years and proportionally more so among
ethnic minority groups. A 300% increase in the
number of people affected by dementia is expected
among ethnic minorities during the next two decades
compared with 50% among native Danes (www.
videnscenterfordemens.dk).
In spite of this, older people from ethnic minorities remain underrepresented in dementia research
and dementia care in terms of diagnosis, treatment,
Copyright # 2015 John Wiley & Sons, Ltd.
and use of social services (Cooper et al., 2010;
Nielsen et al., 2010b; Nielsen et al., 2015). In
Denmark, only 11% of the expected number of
older people from ethnic minorities with dementia
receives a formal dementia diagnosis (Nielsen et al.,
2010a) compared with 60% of native Danes (Phung
et al., 2010).
A number of factors may explain the underrepresentation of ethnic minorities in dementia care. Culture plays a significant role in shaping individuals’
health perceptions, including how members of a given
culture conceptualize a disease, recognize its symptoms, and determine help-seeking behavior
(Dilworth-Anderson et al., 2002; Rovner et al., 2013).
Cultural understandings and stigma relating to
Int J Geriatr Psychiatry 2016; 31: 222–230
Knowledge of dementia in four ethnic groups
dementia and Alzheimer’s disease (AD) may be major
reasons for delay in diagnosis and treatment (Ayalon
and Arean, 2004; Mackenzie, 2006; Mukadam et al.,
2011a). It is important to note, however, that in
addition to knowledge and perceptions of dementia
and AD, numerous linguistic, economic, and cultural
factors may also hamper access to services among
ethnic minorities (Dilworth-Anderson and Gibson,
2002; Connell et al., 2007; Mukadam et al., 2011b).
As in most other European countries, there is currently
a lack of culturally appropriate dementia services for
ethnic minorities in Denmark, and there are often
linguistic, educational, and cultural barriers in
conducting formal cognitive assessments (Nielsen
et al., 2011; Nielsen et al., 2015).
Except from a few studies from the UK
(Adamson, 2001; Mackenzie, 2006; Purandare et al.,
2007; Mukadam et al., 2011a), research examining
knowledge of dementia and AD among people from
ethnic minorities is very limited outside the USA.
Three re-emerging themes in previous qualitative
and quantitative research comparing African
Americans, Asians, and Hispanics in the USA, as well
as South Asians in the UK, with Caucasians are ethnic group differences in accuracy of dementia knowledge, in the likelihood of perceiving dementia to be a
normal part of old age and in holding a stigmatized
view of dementia as a form of insanity (DilworthAnderson and Gibson, 2002; Ayalon and Arean,
2004; Zhan, 2004; Hinton et al., 2005; Mahoney
et al., 2005; Jones et al., 2006; Mackenzie, 2006;
Connell et al., 2007; Lee et al., 2010; Ayalon, 2013).
In the USA, these group differences have partly been
associated with differences in level of education and
degree of acculturation to mainstream US society.
As the history and composition of ethnic minorities
in Europe is different, these findings may not readily
be transferred to the European context. Thus, it is
important to extend previous findings from the
USA to other cultural contexts and ethnic groups.
Denmark has traditionally been a culturally homogeneous country. Immigration from non-Western
countries is a relatively new phenomenon, and the
majority of people from ethnic minorities are young.
It is primarily among Turkish, Polish, Pakistani, and
former Yugoslavian immigrants who came to Denmark in the 1960s and 1970s that older people are
found today.
The aims of the present survey study were: (1) to
compare knowledge and perceptions of dementia and
AD among middle-aged and older native Danes, and
Polish, Turkish and Pakistani immigrants; and (2) to
assess the influence of education and acculturation.
Copyright # 2015 John Wiley & Sons, Ltd.
223
Methods
Participants
Study participants were included between February
and December 2013. The Danish Civil Registration
System (DCRS) (Pedersen et al., 2006) assigns unique
national identification numbers to all Danish residents
by which individual demographic data including age,
gender, current address, and information on immigration (including country of residence before immigration) are recorded, making it possible to identify
people with specific demographic characteristics. Participants were recruited based on a random sample
of names and addresses obtained from the DCRS that
later underwent telephone number enrichment, supplemented with a convenience sample of relatives
and friends of bilingual research assistants and
snowballing. The random sample from the DCRS
was extracted according to the following criteria: (1)
the subject was 50 years or older; (2) had a current address in the greater Copenhagen area; and (3) was either born in Denmark (native Dane) or had
migrated to Denmark from Poland, Turkey, or
Pakistan.
All potential participants were contacted by telephone by a bilingual research assistant. A contact attempt was considered unsuccessful if it had not been
possible to reach a potential participant after five
phone calls at different times on different days, and
the potential participant was excluded from the study.
The majority (213 participants) was interviewed by
telephone, but three participants from the DCRS sample and all participants from the convenience sample
underwent face-to-face interviews.
Based on power analyses, we found that in order to
detect a 1 point difference between the Danish and immigrant groups on our main measure (Dementia
Knowledge Questionnaire (DKQ) total score) with
80% power at a 5% significance level, we required 96
participants in the native Danish group and 48 participants in each of the immigrant groups. Based on these
calculations, we planned to recruit 100 native Danes
and 50 from each of Polish, Turkish, and Pakistani
immigrant groups.
Procedure
All participants completed a structured interview of
approximately 10 min that included a DKQ, demographic information, information or family of friends
with dementia, as well as measures of acculturation
Int J Geriatr Psychiatry 2016; 31: 222–230
224
for immigrant participants. In addition, qualitative
notes were taken on idiosyncratic perceptions of dementia and AD that were not covered by the questionnaire. Prior to the interview all participants were
informed about the purpose of the study, the required
time commitment and that participation was anonymous and voluntary.
Dementia knowledge was assessed with the DKQ
(Graham et al., 1997) that consists of seven questions
with the last two questions having multiple answers
(Table 2). The DKQ assesses knowledge of dementia
in four main domains: “basic knowledge” (3 points),
“epidemiology” (2 points), “aetiology” (6 points),
and “symptomatology” (8 points). A score of 1 is given
for each correct answer with a maximum score of 19
points. The DKQ was supplemented with two questions on normalization of AD in old age and stigma associated with AD from the Alzheimer’s Disease
Awareness Test (ADAT) (Steckenrider, 1993). Several
questionnaires on dementia and AD knowledge exist,
and the reason for choosing the DKQ and the ADAT
questions was that they have previously been used
with ethnic minority groups in the UK and the USA
allowing for direct comparison across studies. The
DKQ and the two questions from the ADAT were
translated into Danish using a translation and backtranslation method. Subsequently, the DKQ was
adapted for the survey design and pilot-tested in five
participants from each ethnic group. In line with
previous research in ethnic minority populations
(Mackenzie, 2006; Adamson, 2001), our pilot study
indicated that the term dementia was often not recognized. Based on this, we chose to allow the use of both
the term dementia and culturally specific lay terms to
enhance immigrant participants’ recognition of the
survey topic. Our aim was not to assess knowledge of
the lexical but rather the conceptual meaning of dementia. In case participants did not recognize the term
dementia, Polish participants were presented with the
cultural lay term sclerosis, Turkish participants with
the term bunama and Pakistani participants with the
terms bhulne ki bimari or nisiaan. Although senility
has been a widely used lay term for dementia in
Denmark, all Danish participants were familiar with
the term dementia.
Acculturation was measured with the Short Acculturation Scale (for Hispanics) (Marín et al., 1987) that
can easily be adapted to diverse cultures and languages
(dela Cruz et al., 2000; Nielsen et al., 2012). In the
present study, the shortened four-item version of the
scale that measures acculturation level according to
two dimensions on a five-point Likert scale, namely,
language use and ethnic social relations was used.
Copyright # 2015 John Wiley & Sons, Ltd.
T. R. Nielsen and G. Waldemar
All interviews were conducted by bilingual research
assistants, who underwent training and received supervision throughout the survey. Research assistants
and participants were matched by cultural background, and surveys were completed in Danish,
Polish, Turkish, Kurdish, Urdu, or Punjabi, depending
on participant preferences. Survey questions were prepared and trained in all languages but because Kurdish
and Punjabi are predominantly oral languages in older
immigrants, the survey questions were in practice
translated by the research assistants in situ. The study
was approved by the Danish Data Protection Agency.
Statistical analysis
Group comparisons were made using a number of
parametric and non-parametric statistical tests. Differences between categorical variables were tested with
the Pearson χ 2-test. Differences between continuous
variables were tested with analyses of variance or the
Independent Samples Kruskal–Wallis Test, when appropriate. The association between years of education,
degree of Danish acculturation, relevant mediating
variables and responses on the questionnaire was investigated using hierarchical linear regression analysis
with plots of residuals as model control for the DKQ
and binary logistic regression for the two ADAT questions. All analyses were performed with SPSS statistical
software (Version 19.0; SPSS Inc., Chicago, IL, USA).
A p-value <0.05 was considered significant.
Results
Sample characteristics
A total of 260 participants were included in the study;
100 native Danish, and 47 Polish, 51 Turkish and 62
Pakistani immigrants. From the DCRS sample, 216
out of 357 (73%) of those successfully reached agreed
to participate in the survey; 100 of 122 (82%) Danish,
46 of 105 (44%) Polish, 29 of 57 (51%) Turkish, and
41 of 73 (56%) Pakistani. Additionally, a convenience
sample of 1 Polish, 22 Turkish, and 21 Pakistani participants were included via relatives and friends of bilingual research assistants and snowballing. Table 1
summarizes the characteristics of the final sample.
There was no difference in the proportion of women,
but otherwise, the groups significantly differed on
most variables. In particular, the Polish group was
older, better educated, and had higher degree of
Danish acculturation compared with other immigrant
groups.
Int J Geriatr Psychiatry 2016; 31: 222–230
Knowledge of dementia in four ethnic groups
225
Table 1 Participant characteristics
Native Danish,
n (%)
Polish immigrant, n
(%)
Turkish immigrant,
n (%)
Pakistani immigrant,
n (%)
p
100
49 (49)
64.5 ± 8.2
11.5 ± 3.2
71 (71)
39 (39)
100 (100)
47
27 (57)
65.1 ± 8.3
14.0 ± 2.7
25 (53)
12 (26)
25 (53)
42 (28.5–45)
3.5 (2.8–4.3)
51
18 (35)
60.1 ± 7.4
4.6 ± 4.2
43 (84)
18 (35)
0 (0)
35 (26.8–43.3)
1.25 (1–1.8)
62
24 (39)
58.3 ± 8.7
9.8 ± 3.9
51 (82)
7 (11)
13 (21)
35 (29–42)
1.5 (1–2)
0.09
<0.001
<0.001
0.001
0.003
<0.001
0.083
<0.001
n
Female
Age (years), mean ± SD
Education (years), mean ± SD
Married
Friends or family with dementia
Interviewed in Danish
Years in Denmark, median (Q1–Q3)
Danish acculturation, median (Q1–Q3)a
n, number; SD, standard deviation; Q1–Q3, first quartile–third quartile.
Danish acculturation score based on the shortened version of the Short Acculturation Scale. Range of scores is 1–5 with higher scores indicating
higher level of Danish acculturation.
a
However, as illustrated in Table 2, the demographic
characteristics of the final sample largely reflected the
underlying ethnic populations in Denmark. Unfortunately, no reliable data on education are available for
immigrant populations in Danish national registries
(Norredam et al., 2011).
Ethnic group differences in knowledge and perceptions
of dementia and Alzheimer’s disease
Overall, all groups had fairly good knowledge about
dementia on the DKQ (Table 3). One-hundred and
seventy-eight (68%) of the participants scored between
10 and 14 out of 19 points. However, differences were
found between the groups on the DKQ total score as
well as all sub-domains. The “basic knowledge” and
“epidemiology” scores were significantly lower in
Turkish and Pakistani participants, and Pakistani participants had the lowest “symptomatology” and DKQ
total scores. In contrast, Turkish participants had the
highest “symptomatology” score. While Polish participants had the highest “aetiology” scores, only a minority of participants across all groups correctly responded
that old age is not a cause of dementia. Memory problems, impaired reasoning, and changes in personality
were the most commonly recognized symptoms of dementia in all groups. This was followed by impaired
speech in the Danish, Polish, and Turkish participants,
while reduced life expectancy was recognized as another common symptom of dementia by Danish participants and impaired mobility and incontinence by
Turkish participants.
Regarding the two questions from the ADAT,
highly significant differences were found between the
groups on normalization of AD in old age and stigma
associated with AD (Table 4). Pakistani and Turkish
participants were generally more likely to perceive
AD to be a normal part of aging and to be a form of
insanity.
Table 2 Distribution of sample population and survey participants by gender, age, and marital status.
Native Danish
n
Female (%)
Age (years), mean a
Married (%)
Polish immigrant
Turkish immigrant
Pakistani immigrant
National
population
Sample
National
population
Sample
National
population
Sample
National
population
Sample
1,017,019
52
65.9
61
100
49
64.5
71
6743
62
61.2
56
47
57
65.1
53
8889
47
60.6
80
51
35
60.1
84
3904
45
61.9
80
62
39
58.3
82
Data for the national ethnic populations aged ≥50 years were extracted from StatBank Denmark for the fourth quarter of 2012 (www.
statistikbanken.dk).
n = number.
a
Individual data on age are not provided by StatBank Denmark. However, data on the number of people within the predefined 5-year age groups are
available, and this were used to calculate the estimated mean age for the national ethnic populations using the center of the 5-year age groups as the
estimated mean age for people in the group (i.e., mean age of people in the age group of 50–54 years = 52.5 years).
Copyright # 2015 John Wiley & Sons, Ltd.
Int J Geriatr Psychiatry 2016; 31: 222–230
226
T. R. Nielsen and G. Waldemar
Table 3 Dementia Knowledge Questionnaire for native Danes, and Polish, Turkish, and Pakistani immigrants
Danish correct,
n (%)
n
Basic knowledge (max score = 3)
Q1. Which part of the body is affected?
(a) Lungs; (b) brain; (c) heart; (d) don’t know
Q2. Mostly affects people aged?
(a) 30–40 years; (b) 40–60 years; (c) ≥60; (d) don’t
know
Q3. Is there a cure?
a) Yes; (b) No; (c) don’t know
Basic knowledge total score, median (Q1–Q3)
Epidemiology (max score = 2)
Q4. How many types?
(a) One; (b) two; (c) three or more; (d) don’t know
Q5. Prevalence in >65 year olds (%)?
(a) <5; (b) 5–20; (c) 20–50; (d) 50–70; (e) 70–100;
(f) don’t know
Epidemiology total score, median (Q1–Q3)
Aetiology (max score = 6)
Q6. Which factors can cause dementia?
(yes, no, and don’t know)
Diet
Infection
Hereditary factors
Stroke
Alcohol
Old age (correct answer is no)
Aetiology total score, median (Q1–Q3)
Symptomatology (max score = 8)
Q7. Dementia typically affects the following:
(yes, no, and don’t know)
Vision
Personality
Reasoning
Memory
Mobility
Speech
Incontinence
Life expectancy
Symptomatology total score, median (Q1–Q3)
DKQ total score (max score = 19)
Median (Q1–Q3)
Mean ± SDb
100
Polish correct,
n (%)
Turkish correct,
n (%)
Pakistani correct,
n (%)
pa
47
51
62
99 (99)
45 (96)
39 (76)
52 (84)
<0.001
77 (77)
37 (79)
34 (67)
47 (76)
0.481
94 (94)
37 (79)
16 (31)
34 (55)
<0.001
3 (2–3)
3 (2–3)
2 (1–3)
2 (2–3)
<0.001
53 (53)
16 (34)
9 (18)
23 (37)
<0.001
57 (57)
19 (40)
8 (16)
12 (19)
<0.001
1 (1–2)
1 (0–1)
0 (0–1)
0 (0–1)
<0.001
24 (24)
29 (29)
85 (85)
67 (67)
71 (71)
7 (7)
3 (2–4)
21 (45)
27 (57)
40 (85)
31 (66)
37 (79)
7 (15)
4 (3–5)
19 (37)
27 (53)
34 (67)
30 (59)
34 (67)
6 (12)
3 (2–4)
20 (32)
36 (58)
47 (76)
40 (65)
44 (71)
1 (2)
3 (2–4)
0.071
<0.001
0.039
0.793
0.613
0.057
0.036
3 (3)
98 (98)
87 (87)
98 (98)
27 (27)
75 (75)
35 (35)
63 (63)
5 (4–6)
3 (13)
38 (81)
39 (83)
46 (98)
18 (38)
37 (79)
17 (36)
15 (32)
5 (4–6)
21 (41)
46 (90)
47 (92)
45 (88)
45 (88)
43 (84)
36 (71)
18 (35)
6 (5–7)
18 (29)
48 (77)
50 (81)
60 (97)
22 (35)
29 (47)
17 (27)
27 (44)
4 (4–5)
<0.001
<0.001
0.326
0.029
<0.001
<0.001
<0.001
0.001
<0.001
11 (10–13)
11.6 ± 2.1
12 (10–14)
11.9 ± 2.6
12 (10–14)
11.9 ± 2.7
11 (8.75–12)
10.3.3 ± 2.3
0.014
<0.001
DKQ, Dementia Knowledge Questionnaire; n = number; Q1–Q3, first quartile–third quartile.
Adjusted DKQ questions have been abridged.
Correct answers are in italics.
a
Pearson chi-squared test for individual items and Independent Samples Kruskal–Wallis Test for total scores.
b
Mean DKQ scores with outliers removed after inspection of box-plot diagrams.
Table 4 Perceptions of Alzheimer’s disease in native Danes, and Polish, Turkish, and Pakistani immigrants
Danish correct, n
(%)
Polish correct, n
(%)
Turkish correct, n
(%)
Pakistani correct, n
(%)
p
95 (95)
39 (83)
24 (47)
27 (44)
<0.001
88 (88)
47 (81)
16 (31)
43 (69)
<0.001
AD is a normal part of becoming older,
like gray hair and wrinkles (false)
AD is a form of insanity (false)
AD, Alzheimer’s disease; n = number.
Numbers reflect correct answers (i.e., “false”).
Copyright # 2015 John Wiley & Sons, Ltd.
Int J Geriatr Psychiatry 2016; 31: 222–230
Knowledge of dementia in four ethnic groups
Turkish and Pakistani participants from the random and convenience samples did not differ in DKQ
total scores (F = 0.866, p = 0.354) or the likelihood of
perceiving AD to be a form of insanity (χ 2 = 0.038,
p = 0.846), whereas the convenience sample was more
likely to perceive AD to be a normal part of aging
(χ 2 = 6.675, p = 0.012).
To examine the unique impact of education and acculturation on the DKQ, a series of hierarchical regression analyses were performed for the DKQ total
score and all sub-domains in the immigrant participants (n = 159). These analyses revealed that, after taking age, gender, and having family or friends with
dementia into consideration, years of education and
degree of Danish acculturation were the main predictors of knowledge on the “basic knowledge”
(F = 22.205, p < 0.001, R2 = 0.221) and “epidemiology”
(F = 3.800, p = 0.023, R2 = 0.048) sub-domains. Also, a
strong trend was observed for an association with
DKQ total score (F = 3.026, p = 0.051, R2 = 0.035).
Logistic regression models for the two ADAT questions revealed a significant association between degree
of Danish acculturation and perceiving AD to be normal in old age (p = 0.01, odds ratio 1.963, 95% confidence interval: 1.308–2.946), whereas no significant
associations were found between years of education,
degree of Danish acculturation, and perceiving AD to
be a form of insanity.
Across all groups, qualitative notes revealed personal losses and hardships, lack of mental stimulation
(including loneliness), depression and other psychiatric diseases, and unhealthy lifestyle to be common perceptions of factors causing dementia that were not
covered by the questionnaire. The qualitative notes
also indicated that many Turkish participants confused dementia with depression (dementia = bunama,
depression = bunalim) and that some Pakistani and
Turkish people expressed religious beliefs concerning
the issue of reduced lifespan in dementia as this was
viewed as an act of Allah rather than a consequence
of the disease.
Discussion
This is the first study to compare knowledge and perceptions of dementia and AD between ethnic groups
in Denmark and is one of the first of its kind in
Europe. To our knowledge, dementia knowledge has
not previously been investigated in Turkish immigrants, who are by far the largest ethnic minority
group across Western Europe. Although some notable
group differences were observed on the DKQ, more
Copyright # 2015 John Wiley & Sons, Ltd.
227
similarities in patterns of responses were observed
than expected. Pakistani and Turkish people generally
had the lowest scores across the items of the DKQ. Exceptions from this were the questions about aetiology
where all groups faired equally well and the questions
about symptomatology, where the Turkish people had
the highest scores. In contrast, striking differences
were found in perceptions of AD, where Turkish and
Pakistani people were much more likely to view AD
to be a normal part of aging and to hold a stigmatized
view of AD as a form of insanity. These findings confirm the views identified in previous qualitative and
quantitative studies in Turkey and Asian immigrant
groups in the USA and the UK (Ayalon and Arean,
2004; Zhan, 2004; Jones et al., 2006; Mackenzie,
2006; Sahin et al., 2006; Gray et al., 2009; Jang et al.,
2010; Lee et al., 2010).
The DKQ scores in our middle-aged and older sample were considerably higher than those observed by
Purandare et al. (2007) in Caucasian and South Asian
(Indian) people in Manchester, UK. Although this
may reflect time trends in dementia knowledge as
the studies are 9 years apart or differing levels of dementia awareness in Danish and UK societies, the
studies cannot be directly compared. Participants in
the UK study were older, and the adopted procedures
differed from ours. Importantly, in the present study,
we allowed the use of culturally specific lay terms to
enhance recognition of the concept of dementia and
conducted the survey as an interview as opposed to
written questionnaires. This may have increased recognition of the survey topic and affected the effort
put in answering the survey questions. However, in
spite of the difference in magnitude, the trends were
the same with the poorest knowledge about dementia
among South Asian people.
All ethnic groups did fairly well in recognizing dementia to be most common in older people and
knowing memory, reasoning, and personality to be affected. An unexpected finding was that the distinction
between age-related cognitive decline, dementia, and
AD remains unclear among all groups, despite ongoing attempts to raise awareness of dementia and AD.
The greatest contrast was found among Danish people, where 93% believed age to be a cause of dementia,
while only 5% believed AD to be a normal part of aging. Apparently, dementia is understood as an independent and a vague concept of cognitive decline in
old age, while AD is more likely to be viewed as a disease entity independent of the aging process.
In the present study, Turkish (69%) and Pakistani
(45%) people were most likely to believe there was a
cure for dementia. This is in line with previous studies
Int J Geriatr Psychiatry 2016; 31: 222–230
228
in Asian minorities in the USA and the UK, where
21–90% have been reported to hold a similar belief
(Ayalon and Arean, 2004; Purandare et al., 2007; Gray
et al., 2009; Jang et al., 2010; Lee et al., 2010). Based
on this, it may seem contradictory that these groups
are underrepresented in dementia services. However,
certain perceptions of dementia and AD may be important in understanding this. As in most other studies of
ethnic minority groups, we found AD to be more stigmatized as a form of insanity among Turkish (69%)
and Pakistani (31%) people. Stigmatization and normalization of AD coupled with certain cultural norms
(e.g., on familial role in care giving and familial shame)
have previously been suggested to keep ethnic minorities from taking advantage of early detection, resulting
in delayed diagnosis and treatment, and eventually,
heavier burden for the family members (Braun et al.,
1995; Hinton et al., 2000; Leong and Lau, 2001; Lee
et al., 2010). Stigma is often linked to shame in Asian
and Middle Eastern cultures and may be responsible
for a general reluctance to seek help outside the family
and lead to the concealment of symptoms and patients
with dementia (Braun et al., 1995; Hinton et al., 2000;
Leong and Lau, 2001; Mackenzie, 2006).
In contrast to previous surveys, we obtained supplementary details on the participants’ perceptions of dementia and AD from qualitative notes. These were
generally in line with qualitative studies and indicated
that additional common perceptions of causes of dementia included loneliness, personal losses or hardships, depression, and physical and mental inactivity,
and that religious beliefs about the consequences of dementia were present among some of the Pakistani and
Turkish people (Adamson, 2001; Dilworth-Anderson
and Gibson, 2002; Clark et al., 2005; Mackenzie,
2006; Connell et al., 2009; Mukadam et al., 2011b;
Schrauf and Iris, 2011).
Higher education and degree of Danish acculturation
contributed significantly to dementia knowledge and
were related to both DKQ total and sub-domain scores.
The largest influence was found in “basic knowledge”,
where years of education and degree of Danish acculturation explained 22% of the variance. Also, the degree of
Danish acculturation was associated with the likelihood
of holding a normalizing view of AD. These findings
corroborates previous findings of the impact of education and acculturation on knowledge and perceptions
of AD in a variety of ethnic minority groups in the
USA (Ayalon and Arean, 2004; Gray et al., 2009; Jang
et al., 2010; Lee et al., 2010; Ayalon, 2013).
Some limitations of the study should be considered.
First, recruitment of ethnic minorities is a common
and well-known challenge in psychogeriatric research
Copyright # 2015 John Wiley & Sons, Ltd.
T. R. Nielsen and G. Waldemar
(Ertan et al., 1999; Connell et al., 2001; DilworthAnderson et al., 2005) and, not surprisingly, participation rates differed between ethnic groups, which led to
a larger proportion of Turkish and Pakistani participants being recruited from a convenience sample. In
spite of this, we believe our final sample is reasonably
representative of the ethnic communities as a whole as
the demographic characteristics of the final sample
largely reflected the underlying ethnic populations in
Denmark, and the convenience sample did not differ
from the random sample in their overall dementia
knowledge. A second limitation is that we did not collect data on self-classified ethnicity. Thus, we cannot
rule out the possibility that some participants would
have classified themselves with an ethnicity that differs
from their country of origin. Third, although our
study found education and acculturation to be explanatory factors for dementia knowledge, they accounted
for 22% of the variance at most. Fourth, the DKQ was
quite brief and was not developed specifically for the
cultural and ethnic groups in the study and might
omit some cultural aspects of dementia and AD. However, we tried to address this issue by taking supplementary qualitative notes. Finally, the switch from
asking about dementia in general to asking about attitudes towards AD specifically may have resulted in
some inconsistency in the questionnaire. Also, some
of the DKQ questions are somewhat arbitrary. In particular, responses to the questions about symptomatology may be related to the stage of dementia
envisioned by the respondent.
In spite of these limitations, we believe the results
from the study advance our understanding of ethnic differences in knowledge and perceptions of dementia and
AD. The present study provides quantitative survey data
for some of the larger ethnic minority groups in
Western Europe and examines the unique influence of
education and acculturation on dementia knowledge
to better contextualize the role of ethnic group differences. In contrast to much of past research, we used a
formal acculturation scale instead of proxy measures
and completed survey interviews in the language of
preference of the participants, leading to a larger variation in both level of education and degree of acculturation. Finally, the study provides data on a community
sample aged 50 years or more, who can be considered
important stakeholders, as either carers or patients.
Conclusion
Although the present study found limited ethnic group
differences in overall knowledge about dementia on the
Int J Geriatr Psychiatry 2016; 31: 222–230
Knowledge of dementia in four ethnic groups
DKQ, notable differences were present on some items,
and striking differences were found in perceptions of
AD. Results from this study suggest that ongoing efforts
to raise awareness that dementia and AD are not part of
normal aging, particularly among Turkish and Pakistani
communities, should be a high priority for educational
outreach. Increased knowledge about dementia and
AD is not only important to reduce stigma and increase
help-seeking but also for understanding of the affected
person and the delivery of care by family members of
those not receiving any formal support.
Conflicts of interest
None declared.
Key points
•
•
•
•
There are notable differences between native
Danish, and Polish, Turkish, and Pakistani
immigrants’ knowledge and perceptions of
dementia and Alzheimer’s disease.
Ethnic group differences are partly explained by
differences in level of education and acculturation.
Ethnic group differences in knowledge of dementia
and the likelihood of holding normalizing and
stigmatizing views of Alzheimer’s disease may
help explain why some ethnic minority groups
are underrepresented in dementia services.
To reduce stigma and increase help-seeking
among ethnic minority groups, efforts to
increase knowledge about dementia and
Alzheimer’s disease should be a high priority
for educational outreach.
Acknowledgements
The authors report no conflicts of interest. This work
is part of the “Migrationsskole” project, which was
supported by the European Union funded Interreg
IV A program. The Danish Dementia Research Centre
is supported by the Danish Health Insurance Foundation and the Danish Ministry of Health and Prevention. The authors thank the research assistants Aniqa
Saqlain, Claudia L. Tassone, Dilek Pinar Atici Secilmis,
Katrine Schneekloth Friis Nielsen, and Lidia
Morawska Nielsen for their invaluable help in
recruiting and interviewing participants.
Copyright # 2015 John Wiley & Sons, Ltd.
229
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