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A Systematic Review of the Public’s Knowledge and Understanding of Alzheimer’s Disease and Dementia

Cahill, Suzanne PhD*,†; Pierce, Maria PhD; Werner, Perla PhD§; Darley, Andrew MSc; Bobersky, Andrea PhD*,†

Alzheimer Disease & Associated Disorders: July–September 2015 - Volume 29 - Issue 3 - p 255–275
doi: 10.1097/WAD.0000000000000102
Review Article

This paper reports findings from a systematic review of the literature on the general public’s knowledge and understanding of dementia/Alzheimer’s disease. The key purpose of the review was to evaluate existing literature with specific attention paid to conceptual and methodological issues and to key findings. Over a 20-year period, 40 published articles satisfied the inclusion criteria. Only 4 of these were qualitative and 5 were cross-national. The review revealed a lack of consistency across studies regarding how knowledge was operationalized, approaches to sampling, response rates, and data collection instruments used including validated scales. A consistent finding across the vast majority of studies was the only fair to moderate knowledge and understanding the general public had. The most common misconception was that dementia was a normal part of aging and there was a lack of clarity about at which point normal age-related memory loss problems become severe enough to indicate dementia. Knowledge of dementia was found to be particularly poor among racial and ethnic minority groups where several myths about causes of dementia were found. Findings point to the need for more educational and advocacy programmes on dementia to be developed particularly in low-income to middle-income countries.

*Dementia Services Information and Development Centre, St. James’s Hospital Dublin

School of Social Work and Social Policy, Trinity College Dublin

School of Nursing and Human Sciences, Dublin City University

School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland

§Department of Community Mental Health University of Haifa, Haifa, Israel

Supported by The Atlantic Philanthropies, through the Living with Dementia Programme based at Trinity College Dublin. This funding supported a student internship as part of a Master’s thesis in Applied Social Research, which focused on a review of published literature on the topic of the public’s knowledge and understanding of dementia and it was this same review that acted as a catalyst for this Systematic Review.

The authors declare no conflicts of interest.

Reprints: Suzanne Cahill, PhD, Dementia Services Information and Development Centre, Top Floor, Hospital 4, St. James’s Hospital, James’s Street, Dublin 8, Ireland (e-mail: dsidc@stjames.ie).

Received October 15, 2014

Accepted June 12, 2015

Raising public awareness of dementia has been singled out as an important area of public health policy1 and is an integral component of most national dementia strategies.1 In the United States, the Obama administration invested $8.2 million, over a 2-year period, to support and increase dementia public awareness.2 In late 2013, the G8 summit identified dementia as a key public health issue and made a commitment to establish a cure for dementia by 2025.3 At the summit, it was argued that responding effectively to dementia required a response from all sectors of society. Accordingly, countries were urged to promote various forms of civic engagement on dementia awareness and to contribute to the prevention of dementia.3 In the United Kingdom, the British Prime Minister’s challenge on dementia, aims to deliver major improvements in dementia care and research and to improve awareness and understanding of the illness.4 According to Prime Minister David Cameron, many people do not understand dementia and therefore lack the relevant knowledge needed to help and support those living with this progressive illness.

Raising public knowledge of dementia is crucial for optimizing care and ultimately enhancing the quality of life of people diagnosed and their caregivers.5 A more well-informed public is more likely to challenge misconceptions of Alzheimer’s disease (AD)/dementia, detect first signs of dementia, and seek early treatment.5 Increasing the knowledge levels of the general population will also help to tackle the stigma of dementia and open up a better informed debate about the needs of those affected.5

One way of increasing knowledge in any substantive discipline is to map out state of the art findings based on published scientific research. Since the turn of the century and especially in the last 5 years, a burgeoning body of empirical literature has developed on the topic of the general public’s knowledge and understanding of dementia. However, as far as the authors are aware, no attempt has been made to conduct a systematic review of this literature to help inform educational programmes and to guide future scientific research. Accordingly, the present study aims to systematically review and evaluate all relevant literature on the topic of dementia literacy and the public’s knowledge and understanding of dementia.

Dementia/AD literacy refers to an individual’s knowledge about dementia/AD from a biomedical perspective. It includes their scientific knowledge and understanding of the disease cause, consequences, symptomatology, evolution, and treatment.6,7 Many studies have shown that those with greater literacy are more likely to identify the syndrome of dementia, seek optimal treatment,8–11 and request their governments to prioritize and adequately address the needs of people affected.5

Dementia is a hugely costly illness12 and is a leading cause of disability and dependence.13 Although some few risk factors such as genes, age, and sex are nonmodifiable, others, such as high blood pressure and high cholesterol are modifiable,14,15 and others again such as diabetes, stroke, and head injury although not modifiable strictly speaking may be manageable or preventable. Thus, governments could make significant savings if citizens were encouraged to pursue lifestyles and behaviors that placed them at reduced risk and if in general lay people were better educated about dementia. However, health educational programmes and national awareness campaigns need to be based on the evidence of what people know, rather than on what policy experts and educators think people know. Hence, the relevance of research on public knowledge and understanding of dementia cannot be underestimated.

The key purpose of this review was to evaluate the existing literature in the area of the general public’s knowledge about dementia, with specific attention to conceptual and methodological issues. Conceptually, the review aimed at identifying the core content of knowledge investigated in each study and in examining how the concept of “knowledge” was operationalized. Factors that might be associated with dementia/AD literacy levels such as age, sex, education, and ethnicity were also explored. Methodologically, we intended to examine the research methodologies used, response rates achieved, sampling approaches adopted, data collection tools used including the use of validated scales, and other design issues such as numbers of quantitative versus qualitative studies and of national versus cross-national designs.

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METHODS

Search Strategy

An internet-based literature search relevant to the topic of the general public’s knowledge and understanding of dementia was conducted. The search was undertaken by using online databases including PubMed, ScienceDirect, Sage, PsychoINFO, and PsychARTICLES and was supplemented by a gray literature search using Google Scholar. The key terms used in the search were: (i) dementia OR Alzheimer’s disease (AD) AND (ii) knowledge OR beliefs OR understanding AND (iii) general public OR societal OR society. To identify additional studies, the search strategy was further supplemented by undertaking a library search using resources at Trinity College and by hand-checking reference lists in relevant articles, not otherwise retrieved through online sources.

Our review aimed to identify studies that specifically investigated the general public’s knowledge (objective or perceived) and understandings of dementia and/or AD. Perceived knowledge was defined as an individual’s subjective assessment of his/her general knowledge, while objective or actual knowledge was defined as an individual’s comprehension of general factual information about the disease, such as its symptoms, causes, risk factors, prognosis, treatments, and prevention. At this initial stage, all articles were reviewed by 2 independent researchers to ensure that they satisfied the study’s inclusion criteria.

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Inclusion Criteria

Following one definition of a systematic review,16 our review involved a replicable scientific and transparent process that aimed to minimize bias. This was done by establishing explicit inclusion criteria followed by an exhaustive literature search of published studies. Inclusion criteria meant that only (i) studies published in English and in peer-reviewed journals between January 1, 1995 and August 1, 2014 were considered and only those (ii) studies that identified the defined key terms in their title, abstract, or text. Abstracts, letters to editors, conference proceedings, books, book chapters, and reports were excluded from the review.

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RESULTS

Number of Studies Included

A total of 128,801 articles (93,427 PubMed, 16,400 Google Scholar, 1064 SAGE, 8590 PsychINFO, 8581 PsychARTICLES, and 739 ScienceDirect) were identified. However, following cursory perusal and preliminary review and based on direct relevance to the study topic (public knowledge and understandings of dementia/AD) these studies were readily reduced to 59. Of the 128,801 articles, a total of 128,679 were excluded as they investigated topics not directly relevant. In addition, a total of 63 of these 128,801 articles were duplicates and were excluded.

Another 19 studies were later excluded as after further scrutiny they failed to meet the study’s inclusion criteria. Nine were excluded as they were published in formats incompatible with the specific criteria identified (3 were non–peer-reviewed reports, 2 were articles in press and not available at the time of this review, 1 was a conference paper, another a conference abstract, 1 was a letter to an editor and another a research update). Eight others dealt with topics not fully relevant such as stigma, emotional responses, and broad attitudes and/or too specific. One other article concerned the views of a person with dementia and his/her caregiver and another was a duplicate. Our review is therefore based on 40 works.

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Background of Studies Reviewed

Information on the countries where these 40 studies were undertaken is provided in Table 1. More than a quarter were conducted in the United States (N=12), 6 in the United Kingdom, and another 6 in Australia. Four studies were undertaken in Israel and 2 took place in France. Other countries that have published work in this area include Greece, Turkey, Japan, Brazil, and Pakistan.

Our review revealed that a total of 5 cross-national studies have been undertaken. Two of these pertained to the same study and involved 5 different countries namely France, Germany, Italy, Poland, Spain, and the United Kingdom.5,17 Two others18,19 involved France, Germany, Italy, Spain, and the United Kingdom. One other cross-national study20 involved a collaboration between France, Germany, Spain, Poland, and the United States.

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Conceptual Issues and Theoretical Basis

One quarter of these studies (N=10) were theory driven or had explicit reference to theory within its text.20–29 The most common theoretical frameworks used were the Health/Illness Belief models, the Common Sense model, and Sociocultural constructs in ethnic groups.

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Content of Knowledge

Each study was reviewed to identify how “knowledge” was operationalized and to gain an understanding of the actual domain of dementia/AD knowledge investigated. A total of 27 studies explored the public’s understanding of treatments (including a cure), 21 risk factors, 17 signs/symptoms of AD/dementia, 15 looked at causes/hereditary, and 13 at prevention (including protective factors). Although risk factors (facilitate the disease process) and protective factors (suppress the disease process) may be similar we counted the number of times each was mentioned independently. Interestingly, 5 studies,17–19,30,31 3 of which were cross-national also investigated the general public’s knowledge and beliefs about government support for AD and dementia.

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Methodological Issues

Quantitative and Qualitative Studies

The review revealed that the majority of studies (90%) included in the review adopted a quantitative approach with only 424,25,32,33 adopting a qualitative approach. Whereas quantitative studies presented valuable information in describing the general public’s knowledge of dementia and its correlates while producing results that can often be generalized to the population, the qualitative studies provided in-depth and more understanding of the experience of dementia held by the general public.

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Probability Versus Nonprobability Sampling

Two thirds of the 40 studies reviewed used nonprobability sampling, usually convenience sampling. A total of 13 papers4,8,20,23,26,34–43 used random sampling.

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Response Rates

Response rates varied considerably across the 40 reviewed studies. The lowest response rate (23%) was found in an Australian population survey of predominantly older people38 and the highest (98%) in a US study of whites, Latinos, and blacks all aged over 50.35 Only 10 studies had high response rates of 80% or more. However, it should be noted that about half the studies (19/40) provided no information on response rates. Only 3 of these same studies were qualitative.

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Sample Size

Sample size varied considerably across the studies reviewed. Six studies used small samples (<100), 2 of which were qualitative and had <20 respondents. Eighteen studies drew on medium size samples of >100 but <600. Two had medium-large samples sizes of >600 but <900. Ten had large samples ranging between 900 and 1999 and 6 had very large samples of 2000 people and over (these figures do not add up to 40 as 2 studies used 2 different sampling strategies).

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Age Profile

Data on the average age of study participants was only available for half of the studies reviewed. In these studies, the mean age varied considerably. The lowest average age was 29 years and the highest was 82 years. In 1 study32 a median age of 82 years was given (range, 62 to 93). Many of the studies had a minimum age requirement of 18 years although 3 used a minimum age of 50 years, another 3 a minimum age of 55 years, and 1 a minimum age of 70 years. In several studies investigating dementia literacy across different ethnic groups, different mean ages of racial and ethnic minority groups were provided.

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Instruments Used to Assess Dementia Literacy

More than three quarters (77%) of the studies reviewed developed their own instruments to collect data on knowledge content, usually using a series of questions (true/false responses) or a vignette prompt. However, 9 studies used the Alzheimer’s Disease Knowledge Scale (ADKS) with some using the original validated tool and others modified versions. Two others used the Dementia Knowledge Questionnaire (DKQ) and another 2 the Epidemiology/Etiology Disease Scale (EEDS). One study22 used 3 different scales namely: (i) the Alzheimer Disease and Ageing Perception Scale (ADAPS); (ii) the Knowledge of Memory Ageing Questionnaire (KMAQ); and (iii) the ADKS. Another study used the Risk Perceptions Survey modified for dementia.27

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Results on Dementia Literacy

In almost half (N=19) of the studies reviewed, poor to very limited levels of knowledge were reported. A common misconception found across these studies was that dementia is a normal part of aging. For example, in a large survey of older people in Istanbul (N=859) it was shown that two thirds of their respondents considered dementia to be a normal occurrence in old age41 and in a later Greek study, of a smaller sample (N=400), similar results were reported.31 A more recent French survey found that 74% of the general public believed it was normal to lose one’s memory with increasing age and most people had difficulty recognizing early stages of dementia.30 In an Irish study, where random sampling was used, 42% of those aged 65 and above, compared with 28% of middle aged and younger people, believed that dementia was normal in older people.39 Likewise, in a recent Australian study of a convenience sample of over 250 well-educated people, the authors concluded that the most common misconception detected on the ADAPS was the public’s tendency to overgeneralize the cognitive deficits associated with normal aging.22 Our review has revealed that lack of knowledge about AD and dementia was particularly evident among ethnic minority groups.8,27,34–36,44

In another 17 studies (42.5%) reviewed, findings revealed that participants had only a fair to moderate level of knowledge about AD and dementia. In several of these studies, while awareness of AD/dementia symptoms was good, knowledge of risk factors and other aspects of dementia/AD, including causes, the difference between AD and dementia, treatments, and prevention was poor. Only 4 studies,29,30,40,45 3 of which have been published recently, reflected good knowledge of dementia among the general public. In 2 of these,29,30 younger people were more likely to be better informed about the risk factors and in 3 of the studies, education was a correlate of knowledge with more highly educated people being more accurately informed.

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Correlates of Knowledge

The most common correlates of knowledge investigated were age (N=15), ethnicity (N=10), education (N=10), and sex (N=9). In a few studies, an inverse relationship was found between age and dementia literacy. For example, in 3 studies older age was associated with less knowledge of AD or dementia.11,21,29 In contrast, in an Australian study of 2000 people aged over 18, both the youngest and oldest age cohorts, compared with middle-aged people, were more aware of the risk factors.26 However, in a later study of indigenous Australians younger participants were significantly less likely to be knowledgeable.46

A total of 10 studies investigated the dementia literacy levels of ethnic and racial minority groups (ERMG). A consistent finding throughout these studies was the lower level of knowledge prevalent among ERMG, although a few of these studies showed that it was not ethnicity per se but rather level of education and years of proficiency in English that determined dementia literacy.8,34,35 One study34 revealed other common misperceptions such as AD being contagious and another35 showed that relative to whites, blacks and Latinos were more likely to perceive stress as a potential risk factor and Latinos were compared with blacks and whites less likely to perceive mental activity as a protective factor.

Another 10 studies showed that education was a key correlate of dementia knowledge.22,28,29,34–36,39,40,47,48 Higher levels of knowledge about dementia were found among better educated people and this correlation applied to both overall level of knowledge about dementia/AD and specific domains of knowledge such as drug treatments,40 risk and protective factors.40 In addition education appeared to be a major factor explaining differences in AD/dementia knowledge among ERMG.34,35,40

In studies where sex was investigated as a correlate of knowledge, by and large women tended to be better informed about AD and dementia.29,31,39–43,49 This finding generally pertained to all age groups of women with 2 notable exceptions. One was a study examining knowledge and beliefs about dementia among the Japanese public where it was shown that women in their 40s to 60s had more knowledge than their younger (20 to 39 y) and older (65 y and above) counterparts. These middle-aged women were also found to be more knowledgeable than their male counterparts.49 The other was the Northern Irish study where it was shown that significantly more men (over one third) than women (less than one quarter) knew that healthy eating habits and exercise were important factors for preventing AD/dementia.39

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Government Responses to Dementia/AD

Finally, 5 studies reported on the general public’s attitudes to government responses to dementia such as funding allocated, educational programmes, and dementia strategies/plans. In general, these studies showed how the public believed that governments could be doing a lot more to address the challenge of dementia.

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DISCUSSION

The aim of this paper was to conduct a comprehensive review of published studies assessing the topic of the general public’s knowledge and understanding of AD and dementia. Attempting to identify the core findings in these studies, synthesize data, and draw conclusions is challenging since as Table 2 shows, a distinct lack of consistency exists across many of these studies about fundamental issues such as concepts and constructs, sampling, inclusion and exclusion criteria, data collection instruments used including validated scales, and what the core purpose of these respective studies were. This difficulty is underscored by the fact that even within the AD expert research community, there is no universal agreement about the “right answer” to some knowledge items included in various studies.45 Despite such difficulties, a few obvious conclusions can be drawn from this systematic review.

Firstly, most of the studies in this review examined knowledge regarding risk factors, symptoms, and treatments for dementia/AD. Several investigated peoples’ understanding of causes and prevention and only five studies reported on the general public’s attitudes to government responses to dementia such as funding allocated, educational programmes, and dementia strategies/plans. The general public’s knowledge about government plans and actions about dementia, on the one hand, highlights the depth and complexity of dementia/AD knowledge among lay persons, underscoring the fact that for the general population “knowledge of dementia/AD” does not only pertain to the biomedical condition itself (eg, risk/protective factors, symptoms, and treatments) but also encompasses cultural literacy.53

Knowledge of dementia is layered and has different dimensions to it (including an awareness of the political meanings and implications of dementia), all of which are interacting. In contrast, this finding reflects the awareness of, and also the significance, a population attributes to dementia as a political and societal issue. This is a particularly important point as high awareness and perceived importance of government response to dementia might point to underlying needs of the public for more and better information/education supports (which in turn may directly influence dementia/AD knowledge) and better support service infrastructures.

A result common across most studies reviewed is that the general public only has a fair to moderate understanding of dementia/AD and that across ERMG, understandings are even more limited. This is a salient finding given that those studies that involved the participation of nonwhites (Indians, Asians, Africans, and other racial groups) and reviewed here in this paper were conducted on migrant populations in western countries and based for the most part on nonprobability samples. In other words, these same studies were not undertaken in low-income and middle-income countries where we know most people with dementia live.1 There is a need for more research to be conducted in low-income and middle-income countries on the topic of public attitudes to dementia. There is also a need for low-income and middle-income countries to include dementia awareness programs in all public health agendas. Sustained action and coordination is required at multiple levels in these countries and among all stakeholders to tackle the increasing number of people with dementia.1,54 In this context we would see a major advocacy and educational role for the World Health Organization and for organizations like Alzheimer’s Disease International.

The most common misconception found across all of these studies is that dementia is a normal part of aging and there is a lack of clarity about the point at which normal age-related memory loss problems become severe enough to indicate dementia. This finding is not surprising given that many health service professionals, even clinicians trained to diagnose and treat illnesses such as dementia, often experience similar concerns.55–57 Several of the studies reviewed also demonstrated a limited understanding of early onset dementia.5,24,30 Given the widespread erroneous belief found across many of the studies that dementia is a normal part of aging, this finding is not entirely surprising.

The studies reviewed also revealed that another common misconception held by the general public is that individuals have no control over whether or not they develop dementia. The review showed that while the public’s knowledge of genetic risk factors seems to be fair to good, knowledge of modifiable risk factors for dementia is poor.26,32,36,37,39,52,58 For example, in one study37 only about one quarter of respondents were aware that hypertension and high cholesterol increase the individual’s risk of developing dementia and in another study just over one third (39%) of respondents identified smoking as a risk factor.30 In contrast, knowledge of age as a risk factor for dementia seems good across most studies reviewed.

Several limitations to this systematic review now need to be acknowledged. First, our review only concerned itself with investigating empirical studies that explored the general public’s knowledge and understanding of dementia/AD. Among the studies selected for review, several explored other issues such as concerns/fears about dementia, belief systems and attitudes, opinions and emotional reactions to people with dementia, personal experience of dementia, and intentions to seek service supports. However, such components of these studies have been excluded in this review and are the subject of future papers or future reviews. Secondly, this review has included 4 qualitative small-scale studies where inductive interpretivist approaches have been used. As researchers conducting this review, deciding how best to deal with these papers was challenging, as these studies cannot be evaluated using the same methods as quantitative studies, nonetheless qualitative approaches have huge merit. Quantitative and qualitative research can be seen as complementary and, in the context of this review, an important contribution that qualitative research makes is to further explore the complexities of and contradictions in the general public’s knowledge and understandings of dementia, areas not amenable to quantitative research but nonetheless areas that provide important insights to inform public awareness raising initiatives. Indeed, we would argue for more qualitative research to be conducted in this area. Thirdly, while this paper has argued for the need to educate the public about risk factors for primary prevention to help reduce dementia prevalence rates and secondary prevention to reduce its impact, we are conscious that this approach could be critiqued for being over simplistic and for attributing blame to the individual. Many of the known barriers leading to ignorance and misunderstandings about health issues in society today are structural rather than individual. At a macro level, a public health approach to tackling the challenge of dementia should be using a multipronged strategy and in addition to educating individuals about lifestyle issues and primary prevention should also be addressing structural inequalities in society including poverty.

This body of literature on knowledge and understanding of dementia/AD has developed very rapidly over recent years. The vast majority of these published studies have come from western countries where populations have been aging for well over a century. In total we identified 40 studies, all but 4 of which were quantitative and 5 of which were cross-national. These 40 studies came from a total of 15 different countries, most of which were European. Our review leads us to conclude that there is a need for more research to be conducted now in low-income and middle-income countries where we know most people with dementia live and where numbers will continue to increase in the foreseeable future.1 We found no clear-cut differentiation in this literature between the concepts of objective and subjective knowledge and our review shows that few studies have been theoretically driven and very few have used qualitative methodologies. Our findings point to the need for more public health campaigns targeting men and women, of different age groups and especially targeting racial and ethnic minorities.

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Keywords:

knowledge; dementia; general public; understanding; ethnic racial minority group

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