Kafadar et al.

BMC Public Health (2021) 21:1124

https://doi.org/10.1186/s12889-021-11231-8

RESEARCH Open Access

Knowledge and perceptions of Alzheimer’s

disease in three ethnic groups of younger
adults in the United Kingdom
Aysegul Humeyra Kafadar*, Christine Barrett and Kei Long Cheung

Abstract
Background: Alzheimer’s disease (AD) is a global public health problem with an ageing population. Knowledge is
essential to promote early awareness, diagnosis and treatment of AD symptoms. AD knowledge is influenced by
many cultural factors including cultural beliefs, attitudes and language barriers. This study aims: (1) to define AD
knowledge level and perceptions amongst adults between 18 and 49 years of age in the UK; (2) to compare
knowledge and perceptions of AD among three main ethnic groups (Asian, Blacks, and Whites); and (3) to assess
potential associations of age, gender, education level, affinity with older people (65 or over), family history and
caregiving history with AD knowledge.
Methods: Data was collected from 186 participants as a convenience sample of younger adults of three different
ethnicities (16.1% Asian, 16.7% Black, 67.2% White), living in the UK, recruited via an online research platform. The
majority of the participants were in the 18–34 years age group (87.6%). Demographic characteristics of participants
and AD knowledge correlation were assessed by the 30-item Alzheimer’s Disease Knowledge Scale (ADKS),
comprising 7 content domains. ANOVA/ANCOVA were used to assess differences in AD knowledge by ethnicity,
gender, education level, age and affinity with dementia and Alzheimer’s patients.
Results: For AD general knowledge across all respondents only 45.0% answers were correct. No significant
differences were found for the total ADKS score between ethnicities in this younger age group, who did not differ
in education level. However, there were significant knowledge differences for the ADKS symptom domain score
even after controlling for other demographics variables such as gender, education level (p = 0.005). White
respondents were more likely to know about AD symptoms than their Black counterparts (p = 0.026).
Conclusion: The study’s findings suggest that the AD knowledge level is not adequate for all ethnic groups.
Meanwhile, significant differences were observed in symptoms, between ethnic groups, and therefore, differ in their
needs regards health communication. The study contributes to an understanding of ethnicity differences in AD
knowledge amongst adults from 18 to 49 years of age in the UK and may also provide input into an intervention
plan for different ethnicities’ information needs.
Keywords: Dementia, Alzheimer’s disease, Ethnicity, ADKS, Knowledge, United Kingdom

* Correspondence: [email protected]
Department of Health Sciences, Brunel University London, Uxbridge UB8
3PH, UK

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Kafadar et al. BMC Public Health (2021) 21:1124 Page 2 of 12

Background by years of speaking English [26]. The knowledge and

Dementia has become a priority global public health perception differences may impact on noticing signs of
problem in the context of the ageing populations [1], af- disease, help-seeking behaviours and health-related life
fecting approximately 44 million individuals with de- quality [26]. Moreover, potential differences in percep-
mentia worldwide. Approximately 850,000 individuals tions between ethnic groups may affect AD and demen-
have dementia in the UK [2]. It is estimated this number tia knowledge [17, 28, 29]. For example, a systematic
will reach 2 million by 2050. In 2019, dementia resulted review showed that dementia and AD have been per-
in a total cost to the UK economy of £34.7 billion [3]. ceived as a normal situation when becoming older
Alzheimer’s Disease (AD) is the most common type of among racial and ethnic minorities [30, 31]. Likewise, in
dementia and is diagnosed in almost 75% of cases in the several previous studies, Black people, Chinese and His-
UK [4, 5]. AD is a progressive and irreversible neurode- panics in the USA were more likely to expect that AD is
generative disease. It does not only lead to loss of mem- a normal part of ageing than their white counterparts
ory but also causes deterioration in other fields of [17, 28].
mental function and in activities of daily living, accom- Decreased knowledge levels may lead to stigmatisation
panied by changes in personality and behaviour [6–9]. in some minority ethnic groups. The stigma can impact
Therefore, AD results in a complex economic burden individuals’ beliefs and attitudes regarding AD, which
for patients and their caregivers due to long-lasting dis- may link to help-seeking behaviours [27, 32, 33]. Re-
abilities, increased dependency, costs of direct medical search investigating knowledge of dementia and AD
and non-medical care such as therapies, resource utilisa- among individuals from ethnic minorities is limited out-
tion, emergent behavioural problems, and loss of func- side the USA, with the exception of several studies from
tionality [10–12]. the UK [27, 34, 35].
Protecting individuals from AD risk factors is of pri- Studies have shown that there are numerous racial dif-
mary importance [13]. The risk of having AD can be de- ferences in the experiences of family caregivers’ inter-
creased when engaging in certain lifestyle behaviours, ventions for dementia and AD amongst different ethnic
e.g. physical activity, regular sleep, abstinence from to- groups, in African American, Latino, and Chinese Amer-
bacco smoking, and socialisation [6, 14, 15]. That is be- icans in the US [36]. These ethnic differences have
cause the AD risk increases with several preventable shown up in multiple areas such as caregiving appraisal,
factors such as obesity, hypertension, type-2 diabetes, to- life satisfaction, psychosocial health, coping, spirituality,
bacco use, and depression [6, 16–18]. Such risk factors social support, self-efficacy, filial responsibility, physical
are often already apparent in a younger population de- functioning, familism, opinions towards older people
cades before typical age of onset of AD [19, 20]. and use of health care and formal services [36, 37]. In a
Previous studies confirm these results and demon- previous study in the US, African Americans notably in-
strate that awareness was most lacking for initiative di- dicated that physicians disrespect the caregivers’ regard-
mensions and emotional blunting for AD patients [21, ing memory loss concerns; Chinese participants, on the
22]. Socio-cognitive theories also showed that awareness other hand, remarked on stigmatisation of individuals
is a prerequisite to changing behaviours [23], and defi- with AD. Moreover, Latinos reported their fears that ac-
ciency of awareness causes different interpretation of culturation would end family home care in the USA
public health communication messages for behaviour (mean age 53) [38].
change [23–25]. To increase awareness of individuals, a In the UK, the Manchester study compared dementia
person’s knowledge, risk perception, behaviour knowledge between Indian and Caucasian older people
cognizance, and perceived cues should be increased or in 2006. It was found that Indian older people had inad-
changed [23–25]. Since these factors may be affected by equate knowledge about dementia by of their relative ab-
ethnicity, firstly differences in perception and informa- sence in the local dementia treatment clinics.
tion needs of ethnic groups should be determined. Additionally, many Indian participants stated that they
Ethnic groups may differ in knowledge and percep- probably did not recognize dementia because they con-
tions with regards to AD due to differences in socio- sidered many of its symptoms to be a normal aging [35].
economic variables (e.g. educational level, income level, In another UK study, although South Asian and black
and having a family member with AD) as well as cultural minority ethnic groups were found to have dementia
drivers [26, 27]. For example, Anglo older adults have four to five years earlier than White British population,
higher levels of AD knowledge than their Latino coun- they were more likely to have late diagnosis because of
terparts in the USA, which was explained by education language difficulties, under-representation in memory
level [26]. Moreover, in the same study it has been found health services, and lack of encouragement for help-
that Latino older adults had more information related to seeking [34]. As a result, previous studies indicated that
AD than their Asian counterparts, which was explained ethnic minorities may have different knowledge and
Kafadar et al. BMC Public Health (2021) 21:1124 Page 3 of 12

perceptions regarding dementia and AD [17, 26–31]. 46]. Importantly, AD knowledge related to AD risk fac-
Hence, there is a need to understand these inequalities, tors and the course of the disease were found to be
to see if dementia and AD prevention initiatives should lower than AD life impact, assessment and diagnosis,
be tailored by ethnic group and to support their diagno- treatment and management, and symptoms knowledge
sis across all ethnic groups as early as possible. The lack amongst younger adults [44]. Lastly, knowledge of AD
of research on the differences in knowledge and risk per- treatment has been determined as insufficient amongst
ception between ethnic minorities may result in the de- 18 years or over years individuals [46]. To the best of
velopment of suboptimal health communication. Hence, our knowledge, there is a paucity of studies which spe-
it is important to understand the differences in level of cifically research AD knowledge between ethnicities for
knowledge, so that health communication strategies can those younger than 50 years in the UK. The situation
be optimised for the UK, and understanding knowledge creates a knowledge gap for young adults’ AD know-
differences between groups will help inform the design ledge and perceptions in different ethnic groups in the
of targeted health communication interventions [23–25, UK. Therefore, in this study, we focused on analysing
34]. The goal of this study is therefore to understand the AD knowledge amongst adults from 18 to 49 years of
level of knowledge regarding AD in the UK and explore age rather than adults 50 years and over. To determine
potential differences between major ethnic groups. public health interventions which increase AD know-
Literature shows that AD knowledge and perception ledge level and change perceptions of AD for population
status have been affected by many demographic factors protection from AD, understanding the knowledge sta-
such as age, gender, marital status, education level, lan- tus among younger adults about risk factors, symptoms,
guage differences, as well as ethnicity [17, 26–28, 30, 31, diagnosis, or assessment criteria of AD is more import-
39–41]. In Bond et al’s study of older adults (ranged in ant than in older adults.
age from 50 to 92), lack of awareness and knowledge of This leads to the aim of this study, which is threefold:
symptoms, treatment and supportive care options have (1) to define AD knowledge level and perceptions
been defined as barriers to improving the availability and amongst adults between 18 and 49 years of age in the
development of treatments and support organisations UK; (2) to compare knowledge and perceptions of AD
for individuals with AD [42]. It was found that there was among three main ethnic groups (Asian, Blacks, and
better knowledge regarding problems concerning diag- Whites); and (3) to assess potential associations of age,
nosis, treatment, and management of AD amongst the gender, education level, affinity with older people (65 or
younger, better educated and university professionals over), family history and caregiving history with AD
than older and less educated people in the Brazilian knowledge.
population [43]. The unemployed or retired individuals
were shown to have poor perceptions and lower levels of
Methods
knowledge about dementia and AD than employed
The cross-sectional study explored self-reported AD
people or students, in China [39]. Another study indi-
knowledge and perceptions amongst adults from 18 to
cated that older Chinese women had more information
49 years of age in the UK. An online survey was designed
on AD than men when educational differences were
for primary data collection.
inspected [41]. Furthermore, it was found that being
male, old age, and having lower education levels were
correlated with AD information paucity amongst Chin- Participants and recruitments
ese participants in the US [37]. However, in other litera- The study was originally designed to focus on adults in
ture, there was evidence that background characteristics the UK and compared three ethnic groups: (1) White
such as age, gender, and education that these may not people, (2) Black people, and (3) Asian people. The in-
have a high significant impact on AD awareness [27, 44]. clusion criteria were, therefore: (1) aged 18 years and
Thus, the impact of demographic features on AD know- over; and (2) resident in the UK (who were either born
ledge and perceptions is unclear, indicating the need to in the UK or had migrated to the UK). Due to a very
explore how demographic differences relate to AD and low response from those 50 and over, and to align with
dementia knowledge. a recognised knowledge gap in younger adults, the inclu-
As mentioned above, previous studies have tended to sion criteria for analysis was restricted to those aged 18
research dementia or AD knowledge amongst older to 49 years.
population (50 years or over) [17, 26, 27, 39, 41, 42, 45] In order to detect a one-point knowledge difference
because the diseases commonly affect older individuals. for AD between three ethnic groups on our main meas-
However, in several studies of the general population in ure (Alzheimer’s Disease Knowledge Scale (ADKS) total
the UK (average of age from 18 to 43), AD knowledge score) with 80% power at a 5% significance level (α =
has been shown to be inadequate in younger adults [44, 0.05), power calculation showed that at least 158
Kafadar et al. BMC Public Health (2021) 21:1124 Page 4 of 12

participants were needed in this study with at least 30 was categorised into a three-group variable (1 = White;
participants per ethnic group. 2 = Black; 3 = Asian).
The convenience sampling was conducted via an on- The questionnaire also included three questions re-
line research platform from Prolific Academic Ltd. [47] lated to affinity with dementia and Alzheimer’s patients,
at a time when restrictions due to the COVID-19 pan- first “Are there any people with dementia and/or Alzhei-
demic limited other study designs and recruitment op- mer’s Disease who are close to you?” (0 = Yes, 1 = No);
tions. The pre-screening questions from Prolific second “Have you ever lived with people older than 65
identified 87,336 potential participants who were cur- years of age?” (0 = No, 1 = I have lived with older people
rently residing in the UK, were at least 18 years old, and who do not have dementia and/or Alzheimer’s disease,
were from these three different ethnic groups, White, 2 = I have lived with older people with dementia and/or
Asian, or Black. Participants were recruited to the study Alzheimer’s disease). Lastly, “Have you ever interacted
on a first-come, first-served basis following receipt of an with people with dementia and/or Alzheimer’s disease?”
email from Prolific to a random subset of all potentially (0 = No, 1 = For several times, 2 = From several weeks to
eligible participants. To ensure sufficient numbers per about a year, 3 = For more than a few years).
ethnic group, the sample was enriched for those of Black
and Asian ethnicity by additional recruitment. At the Alzheimer’s disease knowledge scale (ADKS)
end of recruitment process, we recruited 186 partici- AD knowledge was assessed with a 30-item ADKS scale,
pants aged 18 to 49 years old, out of 190 who responded. which is a commonly used scale designed to measure
AD knowledge. It was found that the test-retest reliabil-
Procedure ity coefficient was 0.81, p < 0.001, revealing adequate
In June 2020, data were collected using an online survey test-retest reliability, coefficient alpha was 0.71 (internal
hosted by Bristol Online Survey. Before the survey, all consistency), and split-half reliability was 0.55, p < 0.001,
participants were informed about the study’s purpose, while content, concurrent, predictive, and convergent
that participation was anonymous, voluntary, that they validity of ADKS was confirmed [48]. The primary out-
were free to withdraw their data without giving a reason come of concern was the ADKS score. The ADKS con-
until the point at which they submit their answers, and sists of 30 true-false questions covering the following 7
the required time commitment. When participants content domains: risk factors (6 items assessing the
logged into the survey portal through Prolific, they first knowledge about AD risk factors, e.g. high blood pres-
read the Participant Information Sheet, then were pre- sure, high cholesterol, genetics, ageing), symptoms (4
sented with a questionnaire. Participants who provided items assessing the knowledge about symptoms of AD,
electronic written consent (though initial survey ques- e.g. tremor and shaking are not symptoms for AD, trou-
tions) and completed the survey received an incentive of bles for handling money or paying bills, and remember-
£1.40 for the approximately 10 min time requirement to ing past events better than things that happened in
complete the survey. recent days are symptoms of AD), course of the disease
(4 items assessing the knowledge about AD process, e.g.
Questionnaire the average life expectancy is 6 to 12 years after symp-
The Bristol Online Surveys application was used to cre- toms of AD appear, people have not recovered from AD,
ate an online survey with closed-ended questions. a person with AD needs 24hour supervision), assessment
and diagnosis (4 items assessing the knowledge of AD
Demographic data assessment and diagnosis, e.g. AD is one type of demen-
Participants’ demographic characteristics were collected tia, memory problem and confused thinking which are
to show whether an association between them and Alz- suddenly appear it is not likely due to AD), treatment
heimer’s knowledge score existed. Gender was recorded and management (4 items assessing the knowledge of
as male, female, other, or prefer not to answer. Age was AD treatment and management process, e.g. poor nutri-
originally coded as an ordinal variable with four age tion can make the symptoms of AD worse, using re-
groups (18–34 years, 35–49 years, 50–64 years, 65 years minder notes is a crutch that cannot contribute to
old and more) with the analysis dataset reduced to the decline AD symptoms), life impact (3 items assessing the
18–34- and 35–49-years groups. Education level infor- knowledge about AD effects on life, e.g. people with AD
mation was categorised as an ordinal variable: no school- are particularly prone to depression, driving car is not
ing completed, nursery school to 8th grade, high school safe for people with AD), and caregiving (5 items asses-
graduate, diploma or the equivalent (for example, GED, sing the knowledge of AD care, e.g. people with AD do
GCSE and ‘A’ level), bachelor’s degree, master’s degree, best with simple, instructions given one step at a time, if
or doctorate degree. A dichotomised education variable a person with AD becomes alert and agitated at night a
of graduate and non-graduate was also derived. Ethnicity good strategy is to try to make sure that the person gets
Kafadar et al. BMC Public Health (2021) 21:1124 Page 5 of 12

plenty of physical activity during the day, and people a relative with dementia and/or AD, and 46.8% of re-
with AD can be capable of making informed decisions spondents stated that they had not interacted with
about their own care) for evaluation of knowledge of AD people with dementia and/or AD, while only 13.4% of
to determine knowledge status of the age group (youn- respondents reported that they lived with older people
ger than 50 years of age) in this study [48, 49]. The ques- with dementia and/or AD. No significant differences
tionnaire also includes a “do not know” section to obtain were found in demographic variables, including educa-
more reliable data [50]. The resulting score is the num- tion, between ethnic groups. The demographic and eth-
ber of questions answered correctly, giving a total score nic groups of the participants are summarised in
with a range of 0–30, where a higher total score indi- Table 1.
cates that the participant has better knowledge [49, 51,
52]. Knowledge and perceptions of dementia and Alzheimer’s
disease in younger adults in the UK
Statistical analysis In order to define AD knowledge level and perceptions
Data contained no missing values. Analyses were con- amongst adults between 18 and 49 years of age of differ-
ducted with IBM SPSS Statistics, version 26. A Shapiro- ent ethnicities in the UK, descriptive analyses were con-
Wilk’s test (p > 0.05) [53] and a visual inspection of his- ducted. In total, 45.0% of answers were correct; the total
tograms, normal Q-Q plots and box plots showed that mean score of the ADKS was 13.5 of 30 (SD ± =5.4 in
the ADKS total score was approximately normally dis- the study sample (Table 3). The majority of participants
tributed across all independent variables (age, gender, (82.8%, n = 154) did not respond correctly to the state-
ethnicity, education level, living with older people (65 or ment that ‘It has been scientifically proven that mental
over), familiarity people with AD and/or dementia, and exercise can prevent a person from getting Alzheimer’s
interaction with people with AD and/or dementia) [53– disease’. Most participants (79.0%, n = 147) responded
55]. Descriptive statistics were used to determine sample correctly that ‘People with Alzheimer’s disease do best
characteristics of variables, ADKS items, the ADKS do- with simple instructions given one step at a time’. The
main scores, as well as percentage of correct answers, percentage of participants who correctly answered each
total and domain ADKS scores by ethnicity. ADKS item is illustrated in Table 2. Items with the
To compare knowledge and perceptions of AD among poorest responses, included those related to AD’s risk
three ethnic groups (Asian, Black, and White), univariate factors (35.3% correct answers, Mean = 2.1, SD ± =1.3 in
analyses were conducted using ANOVA and MANOVA 6 items). Conversely, items with the highest correct re-
to investigate whether there were differences between sponses included those related to life impact (50.8% cor-
the three ethnic groups in terms of total or domain rect answers), and AD’s assessment and diagnosis (50.1%
ADKS scores. ANCOVA was used to assess ethnicity as- correct answers). The percentage correct answers, mean,
sociation with ADKS when controlling for demographic and SD ± for ADKS total and domains are summarised
variables as covariates. Differences between demographic in Table 3.
variables (such as gender and education), and ethnic
groups were assessed with Pearson’s χ2 test. Associations between ethnic groups and ADKS total and
In order to assess the association between other demo- domain scores
graphic variables and AD knowledge, we conducted Univariate ANOVA was used to compare ethnic group
ANOVA tests with age, gender, educational level, affinity differences in knowledge of AD. As shown in Table 3,
with AD, living with 65 or over people, and whether they there was no statistically significant ethnic group differ-
interacted with people with dementia or AD as inde- ence in total ADKS score. However, White participants
pendent variables and ADKS total or domain score as had numerically higher scores for total ADKS score than
the dependent variable. Finally, MANOVA tests were Black and Asian participants (14.0, 13.3, and 12.0, re-
used for multivariate analysis across the domains for spectively). The ADKS domain scores were compared
each independent variable, with a MANCOVA test for between each ethnic groups. Significant differences were
ethnicity controlled for covariates. observed in symptoms, and assessment and diagnosis
domains (p < 0.05). While 44.2% of total respondents
Results gave a correct answer to symptom items, significant eth-
Demographic characteristics nic group differences in knowledge of AD’s symptom
Amongst the 186 participants in these analyses, 67.2% domain were found F (2,183) = 4.285, p = 0.015. Post hoc
were White, and 57.0% were male. The majority of the comparison using the Games-Howell procedure, as ap-
participants (87.6%) were in the 18–34 years age group, propriate for unequal sample group sizes, indicated that
and 54.8% of respondents were non-graduates. Approxi- White participants scored higher than Asian participants
mately 74.2% of participants stated that they do not have on the symptom domain (p = 0.025). In addition,
Kafadar et al. BMC Public Health (2021) 21:1124 Page 6 of 12

Table 1 Descriptive Characteristics of Participants (n = 186), by Race/Ethnicity

Characteristics White Black Asian Total (n = 186;
(n = 125; (n = 31; (n = 30; 100%)
67.2%) 16.7%) 16.1%)
Age Groups (n = 186)
18–34 years 111 (88.8%) 26 (83.9%) 26 (86.7%) 163 (87.6%)
35–49 years 14 (11.2%) 5 (16.1%) 4 (13.3%) 23 (12.4%)
Sex (n = 186)
Female 53 (42.4%) 12 (38.7%) 15 (50.0%) 80 (43.0%)
Male 72 (57.6%) 19 (61.3%) 15 (50.0%) 106 (57.0%)
Education level (n = 186)
Non-Graduate 69 (55.2%) 16 (51.6%) 17 (56.7%) 102 (54.8%)
No schooling completed 3 (2.4%) 0 (0%) 0 (0%) 3 (1.6%)
Nursery school to 8th grade 2 (1.6%) 1 (3.2%) 0 (0%) 3 (1.6%)
High school graduate, diploma or the equivalent (for example, GED, GCSE 64 (51.9%) 15 (48.4%) 17 (56.7%) 96 (51.6%)
and ‘A’ level)
Graduate 56 (44.8%) 15 (48.4%) 13 (43.3%) 84 (45.2%)
Bachelor’s degree 41 (32.8%) 10 (32.3%) 10 (33.3%) 61 (32.8%)
Master’s degree 13 (10.4%) 4 (12.9%) 2 (6.7%) 19 (10.2%)
Doctorate degree 2 (1.6%) 1 (3.2%) 1 (3.3%) 4 (2.2%)
Familiarity with AD/dementia (n = 186)
Yes 34 (27.2%) 8 (25.8%) 6 (20.0) 48 (25.8%)
No 91 (72.8%) 23 (74.2%) 24 (80.0%) 138 (74.2%)
Living with 65 or over years old (n = 186)
No 53 (42.4%) 17 (54.8%) 10 (33.3%) 80 (43%)
Living with 65 or over people without dementia/AD 53 (42.4%) 12 (38.7%) 16 (53.3%) 81 (43.5%)
Living with 65 or over people with dementia/AD 19 (15.2%) 2 (6.5%) 4 (13.3%) 25 (13.4%)
Interacted with people with dementia/AD (n = 186)
No 57 (45.6%) 16 (51.6%) 14 (46.7%) 87 (46.8%)
For several times 44 (35.2%) 6 (19.4%) 10 (33.3%) 60 (32.3%)
From several weeks to about a year 8 (6.4%) 1 (3.2%) 3 (10.0%) 12 (6.5%)
For more than a few years 16 (12.8%) 8 (25.8%) 3 (10.0%) 27 (14.5%)

although 50.8% of participants gave correct answers to 177) = 5.363, p = 0.005, partial η2 = 0.057), with White >
the assessment and diagnosis content domain, significant Black (p = 0.026), but not for the assessment and diagno-
ethnic group differences in knowledge of AD’s assess- sis score.
ment and diagnosis domain were found, with F (2,
183) = 3.286, p = 0.040. Post hoc comparison using the Associations between other demographic characteristics
Games-Howell procedure indicated that Black respon- and ADKS score
dents scored higher than Asian individuals (p = 0.027). In order to explore whether demographic characteristics
On the remaining domains, there were no significant were associated with AD knowledge perceptions, univar-
knowledge differences found amongst these three ethnic iate analyses were conducted using ANOVA for total
groups. Lastly, according to the ANCOVA test, there ADKS score and within MANOVA for multiple
was also no significant effect of ethnicity on total ADKS dependent variables for the domain scores. According to
score after controlling for the effects of gender, age, edu- these analyses, there was no statistically significant asso-
cation level, familiarity with dementia, living with those ciation between ADKS total or domain scores and age
over 65, and interacting with those with dementia, F (2, or education. However, other demographic independent
177) = 2.017, p = 0.136, partial η2 = 0.022. At a domain variables were found to be significantly associated with
level, significant differences were found for symptom different ADKS domains but not total score. Gender was
score after controlling ethnicity for covariates (F (2, significantly associated with the course of the disease
Kafadar et al. BMC Public Health (2021) 21:1124 Page 7 of 12

Table 2 Percentage of Participants Who Correctly Answered Each ADKS Item (n = 186), by Ethnicity
ADKS item Domain Answer White Black Asian Total
(n = 125; (n = 31; (n = 30; (n = 186;
67.2%) 16.7%) 16.1%) 100%)
1. People with Alzheimer’s disease are particularly prone to depression. Life Impact True 49 18 14 81
(39.2%) (58.1%) (46.7%) (43.5%)
2. It has been scientifically proven that mental exercise can prevent a person Risk Factors False 25 4 3 (10.0%) 32
from getting Alzheimer’s disease. (20.0%) (12.9%) (17.2%)
3. After symptoms of Alzheimer’s disease appear, the average life expectancy Course of the True 43 8 6 (20.0%) 57
is 6 to 12 years. Disease (34.4%) (25.8%) (30.6%)
4. When a person with Alzheimer’s disease becomes agitated, a medical Assessment True 55 18 10 83
examination might reveal other health problems that caused the agitation. and Diagnosis (44.0%) (58.1%) (33.3%) (44.6%)
5. People with Alzheimer’s disease do best with simple, instructions giving Caregiving True 99 23 25 147
one step at a time. (79.2%) (74.2%) (83.3%) (79.0%)
6. When people with Alzheimer’s disease begin to have difficulty taking care Caregiving False 35 7 9 (30.0%) 51
of themselves, caregivers should take over right away. (28.0%) (22.6%) (27.4%)
7. If a person with Alzheimer’s disease becomes alert and agitated at night, a Caregiving True 54 12 14 80
good strategy is to try to make sure that the person gets plenty of physical (43.2%) (38.7%) (46.7%) (43.0%)
activity during the day.
8. In rare cases, people have recovered from Alzheimer’s disease. Course of the False 55 10 10 75
Disease (44.0%) (32.3%) (33.3%) (40.3%)
9. People whose Alzheimer’s disease is not yet severe can benefit from Treatment and True 62 19 15 96
psychotherapy for depression and anxiety. Management (49.6%) (61.3%) (50.0%) (51.6%)
10. If trouble with memory and confused thinking appears suddenly, it is likely Assessment False 61 21 10 92
due to Alzheimer’s disease. and Diagnosis (48.8%) (67.7%) (33.3%) (49.5%)
11. Most people with Alzheimer’s disease live in nursing homes. Life Impact False 51 10 13 74
(40.8%) (32.3%) (43.3%) (39.8%)
12. Poor nutrition can make the symptoms of Alzheimer’s disease worse. Treatment and True 57 16 8 (26.7%) 81
Management (45.6%) (51.6%) (43.5%)
13. People in their 30s can have Alzheimer’s disease. Risk Factors True 62 16 15 93
(49.6%) (51.6%) (50.0%) (50.0%)
14. A person with Alzheimer’s disease becomes increasingly likely to fall down Course of the True 67 15 13 95
as the disease gets worse. Disease (53.6%) (48.4%) (43.3%) (51.1%)
15. When people with Alzheimer’s disease repeat the same question or story Caregiving False 67 15 9 (30.0%) 91
several times, it is helpful to remind them that they are repeating themselves. (53.6%) (48.4%) (48.9%)
16. Once people have Alzheimer’s disease, they are no longer capable of Caregiving False 49 11 12 72
making informed decisions about their own care. (39.2%) (35.5%) (40.0%) (38.7%)
17. Eventually, a person with Alzheimer’s disease will need 24hour supervision Course of the True 83 15 18 116
Disease (66.4%) (48.4%) (60.0%) (62.4%)
18. Having high cholesterol may increase a person’s risk of developing Risk Factors True 26 4 6 (20.0%) 36
Alzheimer’s disease. (20.8%) (12.9%) (19.4%)
19. Tremor or shaking of the hands or arms is a common symptom in people Symptoms False 46 6 6 (20.0%) 58
with Alzheimer’s disease. (36.8%) (19.4%) (31.2%)
20. Symptoms of severe depression can be mistaken for symptoms of Assessment True 49 11 7 (23.3%) 67
Alzheimer’s disease. and Diagnosis (39.2%) (35.5%) (36.0%)
21. Alzheimer’s disease is one type of dementia. Assessment True 86 23 22 131
and Diagnosis (68.8%) (74.2%) (73.3%) (70.4%)
22. Trouble handling money or paying bills is a common early symptom of Symptoms True 52 11 9 (30.0%) 72
Alzheimer’s disease. (41.6%) (35.5%) (38.7%)
23. One symptom that can occur with Alzheimer’s disease is believing that Symptoms True 71 17 10.(33.3%) 98(52.7%)
other people are stealing one’s things. (56.8%) (54.8%)
24. When a person has Alzheimer’s disease, using reminder notes is a crutch Treatment and False 43 10 7 (23.3%) 60
that can contribute to decline. Management (34.4%) (32.3%) (32.3%)
25. Prescription drugs that prevent Alzheimer’s disease are available. Risk Factors False 56 14 9 (30.0%) 79
(44.8%) (45.2%) (42.5%)
26. Having high blood pressure may increase a person’s risk of developing Risk Factors True 22 4 10 36
Kafadar et al. BMC Public Health (2021) 21:1124 Page 8 of 12

Table 2 Percentage of Participants Who Correctly Answered Each ADKS Item (n = 186), by Ethnicity (Continued)
ADKS item Domain Answer White Black Asian Total
(n = 125; (n = 31; (n = 30; (n = 186;
67.2%) 16.7%) 16.1%) 100%)
Alzheimer’s disease. (17.6%) (12.9%) (33.3%) (19.4%)
27. Genes can only partially account for the development of Alzheimer’s Risk Factors True 84 20 14 118
disease. (67.2%) (64.5%) (46.7%) (63.4%)
28. It is safe for people with Alzheimer’s disease to drive, as long as they have Life Impacts False 84 26 19 129
a companion in the car at all times. (67.2%) (83.9%) (63.3%) (69.4%)
29. Alzheimer’s disease cannot be cured. Treatment and True 80 16 19 115
Management (64.0%) (51.6%) (63.3%) (61.8%)
30. Most people with Alzheimer’s disease remember recent events better than Symptoms False 73 11 17 101
things that happened in the past. (58.4%) (36.7%) (56.7%) (54.6%)
Total Mean ADKS Score 14.0 13.3 12.0 13.5
(SD ± (SD ± (SD ± (SD ±
5.6) 4.7) 5.6) 5.5)

knowledge domain, (F(1,184) = 6.236, p = 0.013), famil- significant effect of ethnicity on ADKS domains, Λ =
iarity with people with AD/or dementia was significantly 0.863, F (14,342) =1.875, p = 0.028, after controlling for
associated with symptom knowledge (F(1,184) = 11.195, gender, age, education, familiarity with dementia, living
p = 0.001) and living with 65 years old or over was sig- with those over 65, and interacting with those with de-
nificantly associated with caregiving knowledge score mentia. There was also a significant effect on ADKS do-
(F(2,183) = 7.332, p = 0.001), the interactions with people mains, for both living with those over 65, Λ = 0.844, F
with AD and dementia variable was found to have the (14,354) =2.240, p = 0.006, and interacting with those
most associations with AD knowledge. It showed statisti- with dementia, Λ = 0.735, F (21,506) =2.606, p < 0.001.
cally significant association with risk factors (F(3,182) =
3.324, p = 0.021), symptoms (F(3,182) = 5.577, p = 0.001),
assessment and diagnosis (F(3,182) = 3.926, p = 0.010), Discussion
life impact (F(3,182) = 6.212, p < 0.001), caregiving (F(3, To the best of our knowledge, this study is the first to
182) = 3.913, p = 0.010), and lastly for total ADKS score identify and compare knowledge and perceptions of AD
(F(3,182) = 6.832, p < 0.001). Table 4 outlines the univari- amongst adults between 18 and 49 years of age of differ-
ate analyses for the domains. ent ethnicities in the UK. The study had sufficient power
Finally, MANOVA and MANCOVA tests were used to detect a medium effect size (0.25, n = 186) due to each
for multivariate analysis across the domains for each in- group having at least 30 participants (80% power at a 5%
dependent variable. Using Wilk’s statistic, there was a significance level).

Table 3 ADKS Total and Content Domains Scores for Ethnic Groups (n = 186)
Content Domain #items Mean % White (n = 125) Black (n = 31) Asian (n = 30) F P- Significant
SD± Correct Mean SD± Mean SD± Mean SD± value value differencea
ADKS 30 13.5 45.0% 14.0 (5.5) 13.3 (4.7) 12.0 (5.6) 1.675 0.190
(5.4)
Risk Factor 6 2.1 (1.3) 35.3% 2.2 (1.4) 2.0 (1.4) 1.9 (1.2) 0.742 0.478
Symptoms 4 1.8 (1.1) 44.2% 1.9 (1.1) 1.4 (1.1) 1.4 (0.9) 4.285 0.015* White*>
Asian
Course of the 4 1.8 (1.2) 46.1% 2.0 (1.2) 1.5 (1.3) 1.6 (1.2) 2.502 0.085
Disease
Assessment and 4 2.0 (1.1) 50.1% 2.0 (1.1) 2.4 (1.0) 1.6 (1.1) 3.286 0.040* Black*>
Diagnosis Asian
Treatment and 4 1.9 (1.1) 47.3% 1.9 (1.1) 2.0 (1.1) 1.6 (1.1) 1.012 0.365
Management
Life Impact 3 1.5 (0.9) 50.8% 1.5 (0.9) 1.7 (0.9) 1.5 (1.0) 1.072 0.344
Caregiving 5 2.4 (1.3) 47.4% 2.4 (1.3) 2.2 (1.4) 2.3 (1.2) 0.496 0.610
a
Significant differences on interval variables were defined using univariate analysis of variance. Post-hoc analysis using the Games-Howell procedure was
conducted. * p < 0.05, < > indicates direction of differences
Kafadar et al. BMC Public Health (2021) 21:1124 Page 9 of 12

Table 4 Univariate Analyses for Other Demographic Variables (N = 186)

Dependent Independent Variables
Variables (ADKS
domains)
Gender Age Education Familiarity with AD/ Living with 65 or over Interacted with AD/
p- p- Level dementia people dementia
value value p-value p-value p-value p-value
Risk Factor 0.169 0.707 0.387 0.125 0.867 0.021*
Symptom 0.104 0.152 0.134 0.001** 0.788 0.001**
Course of the Disease 0.013* 0.055 0.096 0.089 0.300 0.065
Assessment and 0.733 0.708 0.259 0.143 0.939 0.010*
Diagnosis
Treatment and 0.088 0.616 0.345 0.162 0.308 0.054
Management
Life Impact 0.155 0.650 0.281 0.299 0.220 < 0.001**
Caregiving 0.149 0.095 0.497 0.177 < 0.001** 0.010*
*Significant at p < 0.05 **Significant at p < 0.01

First, we investigated the AD knowledge of adults in Third, we investigated potential demographic differ-
the UK. We found that AD knowledge is not adequate ences in AD knowledge and perceptions. Similarly to an-
among this 18–49 years old UK population regardless of other study [41, 44, 49], we did not find a statistically
ethnicity because total mean score was 13.5 out of 30 significant association between ADKS scores and age. In
points. This finding confirms the few studies in the UK contrast to our findings, other studies in various ages of
which show the AD knowledge is not adequate amongst populations have found that gender, and education level
a young population (from 18 to 43 years) [44, 46]. In our were positively correlated with individuals’ knowledge
study, AD risk factors (35.3%) and symptoms (44.2%) level of AD [26, 27, 39]. Our findings also revealed that
knowledge were found to have a lower level of correct interaction with people with AD or dementia had the
answers than course of the disease knowledge (Table 3). most significant impact on ADKS domain’s knowledge
This contrasts with Hudson et al’s study of slightly older scores amongst our participants. Likewise, previous
adults (mean age 42–43) in Britain, where both ‘risk fac- studies, albeit in variable ages of population illustrated
tor’ and ‘course’ of AD had lower % correct answers that interacting with people with dementia or AD was
than ‘life impact’ and ‘symptoms’ [44]. Importantly, a positively associated with people’s AD knowledge level
large proportion of those participants were unaware of [27, 41].
risk factors that may increase one’s inclination to devel- The abovementioned findings have several implica-
oping AD [44]. This indicates the importance of enhan- tions. With the increasing age of the UK population,
cing AD knowledge among this age group in UK, there is much more need to determine the younger pop-
especially regarding AD risk factors. Similarly, know- ulation’s AD knowledge and perceptions in order to de-
ledge of AD treatment has been found as poor amongst fine their knowledge needs. Determining knowledge
aged 18 and above people in 5 Europe countries (France, needs is important especially in multicultural states be-
Germany, Italy, Spain, and UK) and dementia was not cause cultural differences affect individuals’ belief, per-
viewed as a health care priority [46]. In our study, only ceptions and behaviours. This study adds to the existing
47.3% of participants were able to correctly answer treat- body of literature, specific information regarding the
ment and management related questions. knowledge perceptions amongst adults younger than 50
Second, we compared knowledge differences between years of age of different ethnicities in the UK. Therefore,
three ethnic groups. We found that the primary know- the lack of such studies in the UK has been mitigated by
ledge differences between ethnicities were observed for the study. However, in future research, the ethnic groups
the symptom area of AD although total ADKS score can be separated into their subgroups to provide more
showed no association. In our study analysis revealed evidence to understand the knowledge differences of
that White participants were significantly more likely to ethnicities and races. Further studies might also include
know about AD symptoms. This is in line with a previ- other independent variables such as marital status and
ous study conducted in Florida, which showed signifi- SES to provide comprehensive information for AD
cant differences for ethnicities in each domain of AD knowledge in the UK. Lastly, future studies might be
[17], although in an older population. conducted with larger sample group and wider ages of
participants from the general population.
Kafadar et al. BMC Public Health (2021) 21:1124 Page 10 of 12

The study illustrated that adults younger than 50 years online recruitment panel which could have a bias for
of age in UK have a low level of AD knowledge, support- younger adults; therefore, our participants were not
ing the need for the design and implementation of representing a wider age range representative of a gen-
health communication interventions and policies to en- eral populations. Fifth, the chronic diseases associated
hance AD knowledge. Meanwhile, the study not only ex- with AD, like type-2 diabetes, hypertension, midlife
amined total ADKS score, but also investigated ADKS obesity, having high cholesterol, depression, were not
domain score in order to specifically determine the re- questioned to determine the AD developing risk for par-
spondents’ knowledge needs. The study identified the ticipants. Finally, to determine whether the participants’
weakest areas of AD knowledge among participants, par- information status was an obstacle in accessing the
ticularly in the content knowledge domain related to AD health system, it was not asked if the participants had
risk factors. Depending on the findings, it is recom- difficulty accessing the health system. Thus, the findings
mended that health policymakers may provide the inte- cannot be interpreted as whether individuals do not ac-
grations of research, and clinical and social practice. The cess their health system because of their lack of AD
policymakers might also ensure evidence-based interven- knowledge. Hence, future research should be conducted
tions and guidelines are provided that could maximise with a more diverse and characterised sample.
the AD knowledge level of populations in the UK. In
order to overcome the low AD knowledge level, further
studies can be conducted to define the causes of know- Conclusion
ledge deficiencies. Furthermore, this study showed that AD is a significant public health problem in the UK in a
ethnic groups differ in their knowledge and perceptions, rapidly ageing population. Although most individuals
especially between White and, Black or Asian partici- with dementia or AD live in the community and are
pants regarding AD symptoms. As awareness is a pre- cared for by their family or friends, many studies show
requisite for changing behaviour (as shown in socio- that AD knowledge is insufficient and there are know-
cognitive models) [23–25], this study thus showed that ledge and perception inequalities amongst different eth-
(and how) health communication interventions need to nic groups. Moreover, previous studies have mainly been
target or tailor their health messages to different ethnic inclined to investigate dementia or AD knowledge
groups [24]. Thus, while designing health communica- amongst older population (50 years or over) [17, 26, 27,
tion programs, health messages regarding AD symptoms 39, 41, 45]; hence, the study aimed to research (1) AD
need prioritisation when targeted communication is pro- knowledge amongst adults between 18 and 49 years of
vided for Black or Asian individuals. Although the find- age in the UK, (2) compare knowledge differences be-
ing that interaction with those with dementia had the tween ethnic groups, and (3) illustrate whether there
strongest association with several ADKS domains, it is were correlations between demographic characteristics
perhaps to be expected, and has less implication for pol- and AD knowledge and perceptions . As a result, the
icy or interventions, although it highlights the import- study revealed that although there is not a big differ-
ance of inclusion in demographics in future studies. ence in knowledge of AD as examined with the
The study has several limitations. First, the cross- ADKS between ethnic groups with a similar educa-
sectional study design was used in this research, so it tion, participants have inadequate AD knowledge, es-
could not establish causal relationship between the inde- pecially about AD risk factors. Additionally, Asian
pendent variables and the AD knowledge score. Low participants had lower ADKS score than White and
knowledge levels reasons such as language, stigmatisa- Black people, while White individuals had significantly
tion, and economic factors, were not tested to compare more knowledge about AD symptoms than Black par-
amongst these ethnic groups in this study. Second, the ticipants. Lastly, interacting with people with demen-
study did not separate ethnic groups for their subgroups. tia or AD were found to be positively correlated with
For instance, it did not include Asian subgroups like individuals’ knowledge level of AD. The results indi-
Pakistani, Bangladeshi, or Indian. Third, it should be cate an urgent need for AD education programmes in
remarked that the study was a convenience sample of the age group (younger than 50 years of age) in the
UK populations who were 18 or more years old, as it in- UK, especially to those who do not have much inter-
volved participants who had selected to be registered for action with those with AD or dementia, and the need
the Prolific online recruitment panel and confirmed to to tailor health communication to ethnic groups
be surveyed at the time of the Prolific invitation. Use of based on different knowledge perceptions stipulated
such a convenience sample might limit capability to in this study.
generalize findings. Fourth, the study has only repre-
sented participants between 18 and 49 years old due to Acknowledgments
the study’s recruitment from those registered on an Not applicable.
Kafadar et al. BMC Public Health (2021) 21:1124 Page 11 of 12

Authors’ contributions 11. Jones RW, Romeo R, Trigg R, Knapp M, Sato A, King D, et al. Dependence in
AHK and KLC developed the design for the study. AHK collected data. AHK Alzheimer’s disease and service use costs, quality of life, and caregiver
and CB conducted analyses. All authors interpreted the results. AHK burden: the DADE study. Alzheimers Dement. 2015;11(3):280–90. https://doi.
produced the final manuscript, while KLC and CB critically reviewed the org/10.1016/j.jalz.2014.03.001.
drafts. All authors have read and approved the final manuscript. 12. Jönsson L, Lin P-J, Khachaturian AS. Special topic section on health
economics and public policy of Alzheimer’s disease. Alzheimers Dement.
Funding 2017;13(3):201–4. https://doi.org/10.1016/j.jalz.2017.02.004.
No funding was received for this study. 13. Tosto G, Bird TD, Bennett DA, Boeve BF, Brickman AM, Cruchaga C, et al.
The role of cardiovascular risk factors and stroke in familial Alzheimer
Availability of data and materials disease. JAMA Neurol. 2016;73(10):1231–7. https://doi.org/10.1001/jama
The datasets used and/or analysed during the current study are available neurol.2016.2539.
from the corresponding author on reasonable request. 14. Kent BA, Mistlberger RE. Sleep and hippocampal neurogenesis: implications
for Alzheimer’s disease. Front Neuroendocrinol. 2017;45:35–52. https://doi.
Declarations org/10.1016/j.yfrne.2017.02.004.
15. Ulep MG, Saraon SK, McLea S. Alzheimer Disease. J Nurse Pract. 2018;14(3):
Ethics approval and consent to participate 129–35. https://doi.org/10.1016/j.nurpra.2017.10.014.
Ethical approval for the research was granted from the College of Health 16. Lane CA, Hardy J, Schott JM. Alzheimer’s disease. Eur J Neurol. 2018;25(1):
and Life Sciences Research Ethics Committee (DCS), Brunel University 59–70. https://doi.org/10.1111/ene.13439.
London. The study was managed in line with the University’s policies on 17. Milani SA, Lloyd S, Cottler LB, Striley CW. Racial and ethnic differences in
quality assurance in research. All methods were performed in accordance Alzheimer’s disease knowledge among community-dwelling middle-aged
with the relevant guidelines and regulations of Brunel University. A and older adults in Florida. J Aging Health. 2020;32(7-8):564–72. https://doi.
participant information sheet and the online questionnaire were distributed org/10.1177/0898264319838366.
to explain the study’s aim and process. A consent form also presented to 18. Tappen RM, Gibson SE, Williams CL. Explanations of AD in ethnic minority
ensure voluntarily, confidentiality, privacy, and informed recruitment. The participants undergoing cognitive screening. Am J Alzheimers Dis Other
study was arranged with the statement that participants could leave the Dement. 2011;26(4):334–9. https://doi.org/10.1177/1533317511412047.
study without giving a reason, until the point at which they submitted their 19. Edwards GA, Gamez N, Escobedo G, Calderon O, Moreno-Gonzalez I.
answers. All participants provided informed consent. Modifiable risk factors for Alzheimer’s disease. Front Aging Neurosci. 2019.
https://doi.org/10.3389/fnagi.2019.00146.
Consent for publication 20. Mukadam N, Sommerlad A, Huntley J, Livingston G. Population attributable
Not applicable. fractions for risk factors for dementia in low-income and middle-income
countries: an analysis using cross-sectional survey data. Lancet Glob Heal.
Competing interests 2019;7(5):e596–603. https://doi.org/10.1016/S2214-109X(19)30074-9.
The authors declare that they have no competing interests. 21. Robert PH, Clairet S, Benoit M, Koutaich J, Bertogliati C, Tible O, et al. The
apathy inventory: assessment of apathy and awareness in Alzheimer’s
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