Our study explored dementia knowledge in two Italian-speaking bordering countries. We found that false beliefs on dementia were pervasive, and that dementia knowledge and understanding among young adults, adults, and older adults was low, particularly in the areas of dementia causes and characteristics, risk and protective factors, caregiving and communication. On average participants had low dementia knowledge, as indicated by their means scores on the DKAS, which is lower than the 60th percentile. Variability in levels of dementia knowledge across age groups was noticed. Adults aged 30 to 59 had better dementia knowledge than younger and older adults in most of the dementia knowledge domains investigated. Older people were the most knowledgeable in the area of caregiving and communication. Finally, we found that high educational levels, being a woman, and having or having had direct contact with a family member or acquaintance living with dementia were associated with greater dementia knowledge. The lack of significant association between age and the overall DKAS score might be related to the variability across the investigated dementia knowledge domains.
Our results on higher dementia knowledge levels among women are in line with previous studies [29, 30]. This might be due to the fact that caregivers of people living with dementia are typically women [31, 32], but it might be related to gender differences in health information behavior and health literacy in general: women may be more prone to actively seek information about health-related topics . Similarly, our results on the positive association between educational levels and dementia knowledge are in line with a large body of literature highlighting a positive association between health literacy and education .
Our findings are based on the DKAS, which has been used to assess the acquisition of dementia knowledge through educational online courses  and interventions [36, 37]. However, so far the DKAS has mainly been used for descriptive purposes in specific populations of informal dementia caregivers , medical students , and health workforce . Our results extend evidence on low dementia knowledge, as assessed with the DKAS, to the general population in Italy and Switzerland. Our findings are in line with those of other studies that, even though assessed dementia knowledge with different questionnaire, found low dementia knowledge in the general population [23, 29].
Our study explored dementia knowledge in young adults and compared dementia knowledge among young adults, adults, and older adults. Our finding that young adults have lower dementia knowledge than adults aged 30 to 59 has important implications for dementia prevention. Indeed, as estimations suggest that engagement in health-related behaviors could prevent up to 40% of cases of dementia  and the benefits of engagement in healthy behaviors are cumulative over time , poor knowledge of preventative behaviors amongst young adults could represent a challenge for containment of future cases of cognitive decline and dementia. Notably, midlife is a key moment in the life-course to address vascular dementia risk factors, such as hypertension and obesity ; our results on people in midlife knowledge about risk factors is promising, but it is important to foster younger adults’ knowledge on the topic.
Our finding that, compared to adults, dementia risk perception was lower among young adults and older adults suggest that dementia risk perception varies among the life course. Low dementia risk perception in young adults is not surprising because dementia and old age are intimately related. Low levels of dementia risk perception among older adults compared to those aged 30 to 59 may represent an optimistic bias in older adults . Older adults were however more knowledgeable in how to provide care to a person with dementia. This may be explained by a greater direct involvement in informal caregiving in older compared to younger adults . This reasoning is further supported by the higher levels of dementia knowledge we found among those having a family member or acquaintance with dementia.
Age was not associated with knowledge in how to communicate and behave with a person living with dementia, and nearly half of our sample stated that it could be even impossible to communicate with a person who has severe dementia. This common misconception is worrisome and may contribute to increase loneliness and isolation, disease burden , and social exclusion  among people with dementia. A deeper understanding of dementia, more specifically of how to connect with those living with the condition, is in the roots of a dementia-friendly society, and a prerequisite to enable people with dementia to actively participate in society. Poor knowledge of dementia symptoms and its course can also hamper help seeking, and reduce access to and use of services in older adults.
In sum, consistently with research conducted in other areas of the world, our results highlight a general lack of dementia knowledge and the presence of false beliefs and misconceptions about dementia in Swiss and Italian young adults, adults, and older adults . Hence the general population would benefit from educational interventions on dementia. Our findings that lower educational levels, being a man, and lack of direct contact with a family member or acquaintance living with dementia were associated with less dementia knowledge suggest that, in designing future interventions aiming to increase dementia knowledge, policy makers should take into account the specific target population socio-demographic information, on top of the indirect dementia experience the public may have. As said, our findings are consistent with a large body of evidence that suggests that false beliefs and misconceptions about dementia persist. It is worth noting that ignorance, in its etymological meaning of ‘lack of knowledge’, is in fact not a void or absence of information, but instead a distorted perception of factual knowledge. This implies that scientists and experts have the responsibility to engage with the public in order to disseminate and communicate the results of their research as accessibly and comprehensibly as possible. Communication should be bi- not uni-directional because transfer of knowledge that does not account for existing stances and beliefs cannot substitute ignorance. The participatory action research approach posits that researchers and communities should work in partnership to understand and improve the circumstances they experience . Therefore, interventions aimed at improving dementia knowledge in all age groups may be more likely to contribute to reduce the individual and societal impact of dementia if they entail a theory-based dialogue between experts and the public. Moreover, Dementia may be associated with stigma. Because it cannot be excluded that more and better knowledge of dementia in the general public may contribute to stigma, all actions aimed at increasing dementia awareness must carefully consider and entail parallel efforts to address and possibly reduce stigma as well.
Several limitations of this study should be noted. Although the study sample was large, it was not representative, and our recruitment strategy might have led to selection bias. As we collected data online, older adults with higher education and higher digital literacy may be overrepresented. Second, we did not have access to information about participants’ work in the health sector, which might affect dementia knowledge levels. Moreover, our sample comprised fewer adults aged 30 to 59 years compared to both young and older adults. Besides age, the study sample has a broad sociodemographic spectrum which provides support to internal validity. Nonetheless, our results should be generalized with caution and to similar populations only. The DKAS has not been validated in Italian language, but we strictly followed the WHO recommendations for its translation and lexical adaptation favoring conceptual and cultural rather than literal equivalence . Moreover, differently from previous studies on dementia knowledge that lacked of validated questionnaires , we used a validated measure of dementia knowledge. A validation study was deemed unnecessary also because the DKAS focuses on knowledge about dementia under a biopsychosocial perspective that is presumably culturally invariant, that varies more markedly within rather than between countries and contexts. Measuring dementia awareness through the DKAS might be sub-optimal, and it is of paramount importance to explore the nature of dementia awareness and to improve our understanding of its measurability at the population level through qualitative research.
Our results on widespread false beliefs about dementia are highly consistent with those found in other studies including the 2019 ADI survey on dementia attitudes and stigma . This may provide some empirical support of convergent validity. There is, obviously, no gold standard measure to compare the DKAS to. While criterion validity of the DKAS cannot be quantified, construct validity may not be demonstrated either, and assumptions about an hypothetical underlying construct of dementia knowledge may be relapsed, irrespective of measurability.