Open access Original research BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by Public perceptions of brain health: an international, online cross-­sectional survey Isabelle Budin-­Ljøsne ‍ ‍,1 Athanasia Monika Mowinckel,2 Barbara Bodorkos Friedman,2 Klaus P Ebmeier,3 Christian A Drevon,4,5 Rebecca Bruu Carver,6 Enikő Zsoldos,3,7 Nanna Alida Grit Fredheim,8 Øystein Sørensen,2 William Frans Christiaan Baaré,9 Kathrine Skak Madsen,9 Anders M Fjell,2 Rogier A Kievit,10 Paolo Ghisletta,11,12 David Bartrés-­Faz,13 Laura Nawijn,14 Cristina Solé-Padullés,13 Kristine B Walhovd,2 Sandra Düzel,15 Larisa Zasyekina,16 Maria Florencia Iulita,17 Maria Teresa Ferretti18 To cite: Budin-­Ljøsne I, ABSTRACT Mowinckel AM, Friedman BB, Strengths and limitations of this study Objectives To investigate public perspectives on brain et al. Public perceptions of health. brain health: an international, ► We recruited online an unusually large international Design Cross-­sectional multilanguage online survey. online cross-­sectional sample of people to interrogate about their percep- Setting Lifebrain posted the survey on its website and survey. BMJ Open tions of brain health. 2022;12:e057999. doi:10.1136/ social media and shared it with stakeholders. The survey ► The survey was developed in collaboration with bmjopen-2021-057999 was open from 4 June 2019 to 31 August 2020. representatives from national brain councils, brain Participants n=27 590 aged ≥18 years from 81 countries ► Prepublication history and foundations and research registries interested in in five continents completed the survey. The respondents additional supplemental material brain health and was made available online in 14 were predominantly women (71%), middle aged (41–60 languages. copyright. for this paper are available years; 37%) or above (>60 years; 46%), highly educated online. To view these files, ► The survey responders were not representative of please visit the journal online (69%) and resided in Europe (98%). the general population being mostly middle aged or (http://dx.doi.org/10.1136/​ Main outcome measures Respondents’ views were older, highly educated, female and probably already bmjopen-2021-057999). assessed regarding factors that may influence brain interested in brain health. health, life periods considered important to look after the ► The knowledge gaps observed in this sample of Received 11 October 2021 brain and diseases and disorders associated with the Accepted 24 March 2022 largely highly educated individuals are likely to be brain. We run exploratory linear models at a 99% level of an issue, and perhaps even to a greater degree, in significance to assess correlates of the outcome variables, the broader population. adjusting for likely confounders in a targeted fashion. Results Of all significant effects, the respondents recognised the impact of lifestyle factors on brain health but had relatively less awareness of the role INTRODUCTION socioeconomic factors might play. Most respondents Many neurological and mental conditions rated all life periods as important for the brain affect the brain’s structure and function like (95%–96%), although the prenatal period was ranked dementia, stroke, depression and schizo- significantly lower (84%). Equally, women and highly phrenia, and significantly contribute to educated respondents more often rated factors and the global burden of non-­ communicable life periods to be important for brain health. Ninety-­ diseases.1 The US National Institute on Aging nine per cent of respondents associated Alzheimer’s disease and dementia with the brain. The respondents recently described brain health as the ability made a connection between mental health and the to ‘remember, learn, plan, concentrate, and handle brain, and mental disorders such as schizophrenia and challenges […] and be mentally and emotionally © Author(s) (or their depression were significantly more often considered to in balance, […] making the most of the brain and employer(s)) 2022. Re-­use be associated with the brain than neurological disorders taking care of it’.2 There is increasing evidence permitted under CC BY-­NC. No commercial re-­use. See rights such as stroke and Parkinson’s disease. Few respondents that adopting healthy lifestyles including and permissions. Published by (<32%) associated cancer, hypertension, diabetes and physical activity, having a healthy diet and BMJ. arthritis with the brain. good cardiovascular control, restraining from For numbered affiliations see Conclusions Differences in perceptions of brain health substance use, avoiding chronic stress and end of article. were noted among specific segments of the population. perhaps getting enough sleep may reduce Policies providing information about brain-­friendly health Correspondence to risk of developing some brain diseases, behaviours and targeting people less likely to have Dr Isabelle Budin-­Ljøsne; although such impacts are not conclusively relevant experience may be needed. ​Isabelle.​Budin.​Ljosne@​fhi.n​ o understood.3 4 Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 1 Open access BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by Knowledge regarding how people perceive brain after one’s brain24 and support needed to make lifestyle health, and what actions they are willing to take to main- changes beneficial for the brain.25 In this paper, we report tain a healthy brain, is needed. In Europe, surveys aiming responses to survey questions relating to: (1) factors to investigate public perceptions of cognitive health believed to influence brain health, (2) specific life periods have been conducted in Ireland,5 6 the Netherlands7 and considered important to look after one’s brain, and (3) the UK,8 and suggest limited knowledge and awareness diseases and disorders associated with the brain. Whereas of dementia, dementia risk and factors contributing to extrapolating from responses in this convenience sample cognitive decline. Studies conducted in France9 and the to the general population will not be feasible consid- UK10 reported a lack of understanding of some mental ering the sample characteristics in different countries, we disorders such as schizophrenia, bipolar disorders and adjust the results for confounding variables, such as age autism. In Slovenia, a recent survey reported that, despite and education, where appropriate. awareness of the importance of brain health, laypeople were unlikely to adopt purposefully behaviours beneficial for the brain due to lack of time and information.11 Qual- METHODS itative studies conducted in the UK12 13 and elsewhere in A detailed description of the survey’s background and Europe14 showed varying awareness of actions beneficial design, technical platform as well as a summary of the for the brain, and emphasised the importance of providing main questionnaire has been published elsewhere.22 In people with evidence-­based and trustworthy information brief, the survey included 16 multiple-­choice questions to encourage adoption of brain-­ friendly behaviours. addressing brain health perceptions and 12 questions Studies conducted in Australia and New Zealand have on demographics. The questions were developed using also reported limited knowledge about cognitive health an interview guide from a previous qualitative interview and Alzheimer’s disease (AD)15 and potential measures to study, where we investigated Lifebrain research partic- reduce risk of dementia and cognitive decline.16–19 A 2015 ipants’ perceptions of brain health.26 The survey was systematic review of public perceptions about risk and translated to 14 languages, including English, Danish, protective factors for cognitive health and impairment Spanish, French, Norwegian, Catalan, German, Swedish, concluded that although some awareness was present Hungarian, Ukrainian, Italian, Dutch, Chinese (simplified regarding risk factors for cognitive impairment, efforts Mandarin) and Turkish. The study applied the procedure should be made to provide the general public with accu- of back translation. The survey was made freely available copyright. rate information regarding risk-­reducing strategies.20 online from the Lifebrain website www.lifebrain.uio.no, These studies offer useful insights to understand public was anonymous and took approximately 15–20 min to perceptions of brain health but usually were conducted at complete. No financial compensation was provided to national level and included samples of limited size. They respondents. On the introductory survey page, the US often focused on one specific aspect of brain health, such National Institute on Aging’s description of brain health as cognitive health or a mental illness, used different was provided.2 The survey was available from June 2019 measures and instruments and did not share a common and was closed on 31 August 2020. To be able to submit definition of brain health, making a comparison of results their questionnaire, the respondents had to consent to between studies challenging. Investigating perceptions of the use of their data for research and complete at least brain health in a larger sample and exploring how views five multiple-­choice questions and the 12 demographic may differ depending on gender, age and education will questions. provide new and useful knowledge to guide brain health promotion. If there is a mismatch between what people Patient and public involvement consider important and what the best available evidence The draft survey questionnaire was shared and discussed suggests, there may be considerable public health gains with representatives from patient organisations and to explain the benefits or dangers of certain factors, espe- national brain councils27 in Europe, Lifebrain researchers cially those that could be acted on by the individual. and cohort participants, and members of the public In June 2019, the Lifebrain consortium21 launched the who participated in Lifebrain stakeholder workshops ‘Global Brain Health Survey’.22 Lifebrain is a European and public lectures in Spain, Norway and the UK. Their consortium including 16 partners and data from brain suggestions for improvement were integrated in later imaging cohorts in eight European countries, totalling versions of the questionnaire. The questionnaire was also approximately 6000 research participants.23 We aimed shared with national brain councils in Norway, Belgium to investigate the perspectives of participants in the Life- and Germany, and brain foundations, and some agreed brain cohorts and members of the public on brain health. to become official co-­organisers of the survey. The survey was conducted online and featured as ‘global’ to invite anyone interested in the topic of brain health Sampling to take the survey irrespective of geographical location. The survey was primarily distributed via the Lifebrain The survey included four overall themes: perception of cohorts’ websites, social media and E-­newsletters, and some aspects of brain health (reported here), interest with help from approximately 20–25 European organisa- in undertaking brain health tests, motivations to look tional stakeholders in the consortium network. National 2 Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 Open access BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by brain councils, brain foundations, universities, research Demographic questions projects, professional societies, patient organisations and The respondents were asked about their age category charities, and research registries, whose mission is to (18–25, 26–40, 41–60, 61–70, 71–80, over 80), gender match interested volunteers with research groups, invited (male, female, other, prefer not to tell), highest attained their members to take the survey. In addition, Lifebrain educational qualification (primary school, special educa- researchers posted the survey on their websites and social tional school, secondary school, vocational training, media, and distributed leaflets presenting the survey at university/college degree), relationship/civil status conferences, scientific events, in public libraries and (single, in a stable relationship but not married, married, hospital waiting rooms. The survey was also featured in divorced or separated, or widowed) and occupational Scandinavian media.28 29 As the survey was freely available status (employed for wages or self-­ employed, unem- online, it is likely that it has been shared by other stake- ployed, home maker, student, retired, unable to work, holders outside of Europe. or doing unpaid or voluntary work). The respondents were also asked to rate their ability to think, remember Measures and learn (hereafter referred to as self-­reported cognitive We used three of the 16 multiple-­choice questions in health) as well as their ability to be mentally and emotion- the survey questionnaire providing information about ally in balance (hereafter referred to as self-­ reported perceptions of brain health, and 12 demographic ques- mental health) using a 5-­item Likert scale (excellent, above tions. The three multiple-­choice questions were not average, average, below average, very poor). Finally, mandatory and could be skipped by the respondents, we asked for information about country of residence, whereas the 12 demographic questions were mandatory. previous experience of participating in brain research For each multiple-­choice question, respondents could (yes, no), educational or work experience in healthcare endorse any number of items. (yes, no), experience of long-­standing illness, disability or health problem (yes, no) and experience of looking after a family member with brain disease (yes, no). Factors influencing brain health The first question was: ‘In your opinion, to what extent Statistical analysis do the following influence brain health?’. A list of 11 Exploratory linear models were performed on all survey factors was provided including physical health, diet, questions presented applying R V.4.1.0.30 Ten models physical environment (eg, air pollution, noise), social copyright. were used per response category, exploring the relation- environment (eg, family, social network), education, ship between demographic characteristics and responses. profession, family income, genetics and family medical We report binarised responses and ORs for the purposes history, substance use (eg, alcohol, smoking and drugs), of communication and simplicity. However, we are aware sleeping habits and having goals that make life mean- of the potential pitfalls,31 so for purposes of robustness, we ingful. The respondents could rate the factors using a also report the data modelled as continuous in the online 5-­item Likert scale (very strong, strong, moderate, weak supplemental materials, and note the general agreement or no influence). between the binary and continuous models (see online supplemental material 1). Complete detailed descriptive Specific life periods to look after one’s brain statistics are provided for all questions in online supple- The second question was: ‘In your opinion, at what stages mental material 2 and the continuous, binary and ordinal in life is it important to look after one’s brain?’. Respon- models for question 1 and question 2 are provided in dents could rate six life periods: in the womb (before online supplemental material 3. Only responses from birth), childhood (from birth to 12 years), adolescence submitted questionnaires were used in the analysis. (13–18 years), young adulthood (19–45 years), middle For the first question (factors influencing brain age (46–65 years) and old age (over 65 years), using a health), responses of ‘very strong’ and ‘strong’ were 4-­item Likert scale (very important, important, moder- classified as indicating an association between the ques- ately important, not important). tion and response category, while the remaining options (‘moderate’, ‘weak’ and ‘no influence’) were categorised Diseases and disorders associated with the brain as indicating no association. Similarly, in the second ques- The third question was: ‘Which of the following diseases/ tion (life periods to take care of one’s brain), responses disorders do you associate with the brain?’. A list of 13 of ‘very important’ and ‘important’ were classified as disorders was provided, of which 10 are recognised brain indicating that respondents considered the life period disorders (ie, AD and other forms of dementia, bipolar as important to take care of the brain, indicating a posi- disorder, schizophrenia, Parkinson’s disease, addiction, tive association between the question and response cate- stroke, depression, migraine, anxiety, cancer), and three gory, whereas responses of the remaining ‘moderately are known to have an impact on the brain (ie, diabetes, important’ and ‘not important’ were classified as indi- arthritis and hypertension). When listing cancer, we did cating that the respondents considered the life period as not specify whether it referred to brain cancer or other not so important or not important. The third question was types of cancer. already on a binary scale, where responses were logged by Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 3 Open access BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by selecting from a list of diseases and disorders associated Table 1 Number of respondents by country with brain health. For each category, separate predic- tive logistic regression models for (1) age, (2) gender, Country Respondents (n) % of total (3) education, (4) relationship status, (5) experience or UK 10 160 36.8 education in healthcare, (6) experience with illness, (7) The Netherlands 7023 25.5 experience of being a caregiver for someone with a brain Norway 3549 12.9 disease, (8) rating of own cognitive health, and (9) rating Spain 2095 7.6 of own mental health as predictors were computed. Demographic variables with more than three response Denmark 1101 4.0 categories were reduced to aid interpretation of results. Germany 1060 3.8 Education was reduced to whether the subject had higher Sweden 760 2.8 education (university degree) or not. Age was reduced Italy 311 1.1 to three categories: ‘youngest’ (those below 40 years), Ukraine 311 1.1 ‘middle-­ aged’ (those between 40 and 60 years) and ‘oldest’ (those above 60 years, the largest response group). Hungary 187 0.7 Gender was reduced to three categories: ‘woman’, ‘man’ USA 165 0.6 and ‘other/prefer not to tell’. The ratings of subjects’ own Slovenia 148 0.5 mental and cognitive health were reduced to two catego- Turkey 139 0.5 ries: one for those rating their health as average or above, Belgium 115 0.4 and those rating their health as below average. Relation- ship was reduced to those being in a stable relationship Other (<100 respondents 466 1.7 (married and domestic partnerships) or not. The base per country) comparison groups for each predictor variable were set Total 27 590 100 as the category where there was the highest number of subjects. The very large sample size with high statistical power strategies from one country to another, making mean- made it very likely that group differences apparent on ingful comparisons of responses between countries is inspection of numbers were statistically significant. This hardly feasible. We thus only provide below the results for copyright. means that many statistically significant results may not the whole sample across countries. be of practical importance. We report results signifi- Table 2 provides an overview of the demographic char- cant at the 1% level of probability, with false discovery acteristics of the whole sample. The respondents were rate correction across all models and covariates for each predominantly middle aged (41–60: 37.4%) or older outcome variable. We used multivariable testing with (>60: 46.2%), women (71.1%), married or in a rela- logistic regression to adjust results only for questions 1 tionship (71.8%) and highly educated (68.6%). About and 2 adjusting the observed sex effect for age and educa- half of the respondents (51.4%) reported being in paid tion. Similarly, in question 3, we controlled the ‘stable employment and a third (38.5%) having an educational relationship effect’ for age and education. Finally, the or employment experience in healthcare. The respon- Strengthening the Reporting of Observational Studies in dents largely rated their cognitive health (93.9%) and Epidemiology cross-­sectional reporting guidelines were their mental health (86.8%) as average or above average. used.32 40.4% of respondents reported having a long-­standing illness, disability or health problem. 46.5% reported having an experience of looking after a family member RESULTS with brain disease, and 43.2% an experience of partic- Respondent characteristics ipating in brain research. A majority of respondents In total, 27 590 respondents from 81 countries completed (57%) had been recruited through the research registries the survey. 99.9% of respondents (n=27 552) completed Join Dementia Research33 in the UK and ​Hersenonder- the first question, 99.8% (n=27 536) completed the zoek.​nl34 in the Netherlands. The demographic charac- second question and 99.8% (n=27 530) completed the teristics of respondents in the seven European countries third question. All respondents completed the demo- with most responses are provided in online supplemental graphic questions. material 4. Table 1 provides an overview of the number of respon- dents by country. The respondents predominantly lived Factors influencing brain health in Europe (98%), including the UK (36.8%), the Nether- Figure 1 shows how many respondents rated each factor lands (25.5%), Norway (12.9%), Spain (7.6%), Denmark as having strong or very strong influence on brain health. (4.0%), Germany (3.8%) and Sweden (2.8%). Respon- Most respondents rated substance use (92% of partic- dents outside Europe primarily resided in the USA (0.6%) ipants), physical health (87%), sleeping habits (85%), and Turkey (0.5%). Due to large variation in the number social environment (83%) and genetics (83%) as having of responses between countries, and varying recruitment a strong/very strong influence on brain health, followed 4 Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 Open access BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by 5-­item Likert scale is provided in the online supplemental Table 2 Demographic characteristics of the whole sample material 2, sections 1.1–1.11. Respondents % of Differences in response patterns were observed Respondents (n) total between demographic groups of respondents (table 3). Gender Men were less likely than women to consider factors  Women 19 626 71.1 such as substance use (OR 0.66, 99% CI 0.58 to 0.74),  Men 7833 28.4 sleeping habits (OR 0.68, 99% CI 0.62 to 0.74) and diet  Other 131 0.5 (OR 0.70, 99% CI 0.65 to 0.75) as having strong or very  Total 27 590 100.0 strong influence on the brain. In contrast, men were more prone to rate profession (OR 1.18, 99% CI 1.10 to Age range (years) 1.27) and education (OR 1.13, 99% CI 1.05 to 1.21) as  18–40 4502 16.4 important. After controlling for education level and age,  41–60 10 328 37.4 these effects remained significant. Respondents with low  >60 12 760 46.2 education put less emphasis on factors such as education Education (OR 0.62, 99% CI 0.58 to 0.66), physical health (OR 0.73, 99% CI 0.66 to 0.81), profession (OR 0.75, 99% CI 0.71  Higher education 18 925 68.6 to 0.81) and substance use (OR 0.75, 99% CI 0.67 to 0.85)  Lower education 8665 31.4 as compared with highly educated respondents. However, Relationship status they had higher odds of considering income (OR 1.11,  Yes 19 819 71.8 99% CI 1.04 to 1.19) and physical environment (OR 1.06,  No 7771 28.2 99% CI 0.98 to 1.14) as having a strong/very strong influ- Occupation* ence on brain health. Respondents older than 60 years gave more importance  Employed for wages 14 181 51.4 to income than participants below 40 years of age (OR  Retired 10 550 38.2 0.81, 99% CI 0.73 to 0.89) and respondents aged 41–60  Other 9708 35.2 years (OR 0.98, 99% CI 0.91 to 1.05). The same was Employment and/or education in healthcare observed for having meaningful goals in life. In contrast,  No 16 955 61.5 importance given to sleep decreased with age and respon- copyright.  Yes 10 635 38.5 dents below 40 years of age (OR 2.78, 99% CI 2.39 to 3.23), and respondents aged 41–60 years (OR 2.06, 99% CI 1.87 Participation in brain research to 2.28) more often rated sleep as having a strong/very  No 15 671 56.8 strong influence on brain health as compared with the  Yes 11 919 43.2 respondents older than 60 years. The same accounted for Self-­rated cognitive health factors such as social environment, diet and profession.  Below average 1661 6.1 Respondents with a higher education level, respon-  Average or above average 25 929 93.9 dents with a reported education or experience in health- care, respondents who self-­ rated their cognitive and Self-­rated mental health mental health as average or above and women were more  Below average 3632 13.2 prone to rate all factors as having a strong or very strong  Average or above average 23 958 86.8 influence on brain health (see online supplemental mate- Experience of illness, disability or health problem rial 5, section 1). In contrast, respondents who self-­rated  No 16 451 59.6 their cognitive and mental health as below average were  Yes 11 139 40.4 less likely to rate all factors as having a strong or very strong influence on brain health, with one notable excep- Experience as caregiver of patient with brain disease tion. Respondents rating their mental health as below  No 14 762 53.5 average were more likely to rate sleep as important (OR  Yes 12 828 46.5 1.33, 99% CI 1.16 to 1.53) as compared with respondents *Percentages add up to >100% and n>27 590 because multiple rating their mental health as average or above. Likewise, responses were allowed. respondents in a stable relationship were less prone to rate sleep as important (OR 0.81, 99% CI 0.74 to 0.89), and more prone to rate genetics as important (OR 1.20, 99% CI 1.11 to 1.31) as compared with other respondents by life goals (72%), physical environment (72%), diet not in a stable relationship. (71%) and socioeconomic factors such as education (61%), profession (56%) and income (36%). Other Life periods to look after ones’ brain respondents rated the factors as having a moderate, weak Figure 2 shows that the respondents rated most life or no influence on brain health. A detailed description of periods as important or very important for the brain how factors were rated by all respondents according to a (95%–96%), whereas the prenatal stage (in the womb/ Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 5 Open access BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by Figure 1 Factors believed to have a strong influence on brain health. % indicates proportion of participants rating this factor as having a ‘strong’ or ‘very strong’ influence on brain health, with the remainder of participants rating it as ‘moderate’, ‘weak’ or ‘no influence’. before birth) was rated as important or very important 1.41) as compared with respondents not in a stable by 84% of respondents (online supplemental material 2, relationship. section 2). copyright. Table 4 shows that men were less likely to consider Diseases and disorders associated with the brain life periods such as the middle age (OR 0.41, 99% Figure 3 shows that 99% of the respondents associated CI 0.35 to 0.48) and old age (OR 0.41, 99% CI 0.35 to AD and other forms of dementia with the brain. The 0.49) as important as compared with women. This was next most often selected disorders were mental disorders also observed when controlling for age and education. like schizophrenia (96%), depression (95%), bipolar Respondents with lower education were also less likely to disorder (92%), anxiety (91%) and addiction (88%). rate life periods as important as compared with higher Disorders least often associated with the brain included educated respondents, except for young adulthood (OR cancer (32%), hypertension (32%), diabetes (16%) and 1.06, 99% CI 0.90 to 1.24). The youngest respondents arthritis (5%). (<40) were less likely to consider middle age (OR 0.82, Women were more likely than men to associate the 99% CI 0.67 to 1.00) and old age as important (OR 0.55, diseases with the brain, and this was particularly observed 99% CI 0.45 to 0.67) compared with the oldest respon- for bipolar disorder (OR 0.47, 99% CI 0.42 to 0.53), stroke dents (>60). Rather, the youngest respondents were more (OR 0.53, 99% CI 0.48 to 0.58) and schizophrenia (OR likely to consider childhood (OR 1.89, 99% CI 1.51 to 0.64, 99% CI 0.54 to 0.75) (table 5). A similar trend was 2.37) and adolescence important (OR 2.14, 99% CI 1.60 to 2.85) as compared with the oldest respondents (>60). observed among lower educated respondents, who were Respondents with an education or experience in less likely to select disorders such as bipolar disorder (OR healthcare were more prone to consider the life periods 0.42, 99% CI 0.38 to 0.47) and AD/dementia (OR 0.48, as important, especially pregnancy (OR 1.91, 99% CI 1.74 99% CI 0.34 to 0.67) as compared with highly educated to 2.10) and childhood (OR 2.06, 99% CI 1.74 to 2.43) respondents. as compared with other respondents with no experience The youngest respondents (aged <40) were less likely (online supplemental material 5, section 2). Respon- to associate with the brain diseases often appearing in old dents with lower education were consistently less likely to age such as AD/dementia (OR 0.35, 99% CI 0.23 to 0.51), consider the life periods as important as compared with stroke (OR 0.76, 99% CI 0.67 to 0.87), hypertension (OR respondents with higher education, except for young 0.65, 99% CI 0.59 to 0.72) and Parkinson’s disease (OR adulthood, which they were more likely to consider 0.80, 99% CI 0.71 to 0.91), as compared with respondents important as compared with the highly educated (OR aged >60. In contrast, they more often selected disorders 1.06, 99% CI 0.90 to 1.24). Respondents in a stable rela- such as migraine (OR 2.18, 99% CI 1.91 to 2.48) and tionship were more prone to consider important taking bipolar disorder (OR 1.90, 99% CI 1.59 to 2.26), addic- care of the brain in old age (OR 1.21, 99% CI 1.03 to tion (OR 1.50, 99% CI 1.29 to 1.74) or anxiety (OR 1.44, 6 Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 Table 3 Factors believed to have a strong influence on brain health by demographic groups Substance use Genetics Physical health Variable Characteristics % OR 99% CI % OR 99% CI % OR 99% CI Gender Women 93.3 83.4 88.3 Men 90.1 0.66 0.58 to 0.74 80.0 0.79 0.73 to 0.87 85.3 0.77 0.70 to 0.85 Other/undisclosed 85.8 0.44 0.23 to 0.84 69.8 0.46 0.28 to 0.76 85.0 0.75 0.39 to 1.43 Age (years) >60 90.5 83.4 86.6 41–60 94.2 1.70 1.49 to 1.95 83.6 1.01 0.92 to 1.11 88.1 1.14 1.03 to 1.26 <40 93.2 1.43 1.20 to 1.69 76.6 0.65 0.58 to 0.72 88.4 1.17 1.02 to 1.34 Education Higher education 93.0 82.6 88.6 Lower education 90.9 0.75 0.67 to 0.85 81.8 0.94 0.87 to 1.03 85.0 0.73 0.66 to 0.81 Experience or education No 91.3 81.7 85.7 in health care Yes 94.0 1.50 1.32 to 1.70 83.4 1.12 1.03 to 1.22 90.2 1.53 1.39 to 1.70 Sleeping habits Social environment Life goals Variable Characteristics % OR 99% CI % OR 99% CI % OR 99% CI Gender Women 86.5 84.1 73.5 Men 81.3 0.68 0.62 to 0.74 79.2 0.72 0.66 to 0.79 71.1 0.89 0.82 to 0.96 Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 Other/undisclosed 87.4 1.08 0.54 to 2.16 90.4 1.79 0.81 to 3.91 70.9 0.88 0.53 to 1.46 Age (years) >60 79.6 79.9 74.3 41–60 89.0 2.06 1.87 to 2.28 84.1 1.33 1.22 to 1.46 73.3 0.95 0.88 to 1.03 <40 91.6 2.78 2.39 to 3.23 87.3 1.73 1.52 to 1.97 67.2 0.71 0.64 to 0.78 Education Higher education 85.8 83.6 73.2 Lower education 83.4 0.83 0.76 to 0.91 80.9 0.83 0.76 to 0.91 71.9 0.94 0.87 to 1.01 Healthcare experience No 83.6 80.6 70.9 Yes 87.3 1.35 1.23 to 1.48 86.1 1.48 1.36 to 1.62 75.7 1.28 1.19 to 1.37 Physical environment Diet Education Variable Characteristics % OR 99% CI % OR 99% CI % OR 99% CI Gender Women 72.7 73.7 59.8 Men 69.6 0.86 0.80 to 0.93 66.2 0.70 0.65 to 0.75 62.7 1.13 1.05 to 1.21 Other/undisclosed 77.8 1.31 0.76 to 2.29 72.4 0.94 0.56 to 1.57 64.6 1.22 0.76 to 1.98 Age (years) >60 69.8 66.7 60.9 41–60 74.3 1.25 1.16 to 1.35 75.6 1.54 1.43 to 1.67 59.2 0.93 0.87 to 1.00 <40 71.7 1.10 0.99 to 1.21 76.1 1.59 1.44 to 1.77 63.4 1.11 1.01 to 1.22 Continued Open access 7 copyright. BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by 8 Open access Table 3 Continued Physical environment Diet Education Variable Characteristics % OR 99% CI % OR 99% CI % OR 99% CI Education Higher education 71.5 73.1 64.3 Lower education 72.6 1.06 0.98 to 1.14 68.2 0.79 0.73 to 0.85 52.6 0.62 0.58 to 0.66 Healthcare experience No 70.5 69.0 58.0 Yes 74.0 1.19 1.11 to 1.28 75.6 1.39 1.29 to 1.49 64.8 1.33 1.25 to 1.42 Profession Income Variable Characteristics % OR 99% CI % OR 99% CI Gender Women 54.6 36.2 Men 58.7 1.18 1.10 to 1.27 35.0 0.95 0.88 to 1.02 Other/undisclosed 54.3 0.99 0.62 to 1.57 40.2 1.18 0.74 to 1.89 Age (years) >60 53.2 36.8 41–60 57.0 1.16 1.08 to 1.24 36.3 0.98 0.91 to 1.05 <40 60.2 1.33 1.21 to 1.46 32.0 0.81 0.73 to 0.89 Education Higher education 58.0 35.1 Lower education 51.0 0.75 0.71 to 0.81 37.5 1.11 1.04 to 1.19 Healthcare experience No 53.9 33.5 Yes 58.8 1.23 1.15 to 1.31 39.6 1.30 1.22 to 1.39 Univariate ORs and 99% CIs. % indicates proportion of participants rating this factor as having a ‘strong’ or ‘very strong’ influence on brain health, with the remainder of participants rating it as ‘moderate’, ‘weak’ or ‘no influence’. Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 copyright. BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by Open access BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by Figure 2 Life periods considered important to take care of one’s brain. % indicates proportion of participants rating this life period as ‘important’ or ‘very important’, with the remainder of participants rating it as ‘not important’ or ‘moderately important’. 99% CI 1.23 to 1.70) as compared with respondents aged diseases/disorders above with the brain as compared with >60. other respondents, although they had higher odds of Respondents who self-­assessed their mental health to considering mental disorders such as anxiety (OR 1.51, be below average were less likely to associate the given 99% CI 1.26 to 1.82), depression (OR 1.40, 99% CI 1.10 Table 4 Life periods considered important to take care of one’s brain by demographic groups In the womb Childhood (0–12) Adolescence (13–18) copyright. Variable Characteristics % OR 99% CI % OR 99% CI % OR 99% CI Gender Women 85.9 95.7 97.0 Men 78.0 0.58 0.53 to 0.63 93.0 0.59 0.51 to 0.69 95.6 0.68 0.57 to 0.81 Other/undisclosed 86.4 1.04 0.53 to 2.04 95.2 0.89 0.30 to 2.63 96.0 0.75 0.23 to 2.44 Age (years) >60 80.7 93.4 95.5 41–60 86.2 1.49 1.36 to 1.64 96.2 1.78 1.51 to 2.09 97.3 1.71 1.41 to 2.08 <40 86.1 1.48 1.31 to 1.68 96.4 1.89 1.51 to 2.37 97.9 2.14 1.60 to 2.85 Education Higher education 86.0 95.8 97.0 Lower education 78.5 0.59 0.54 to 0.65 92.9 0.57 0.50 to 0.66 95.6 0.67 0.56 to 0.80 Healthcare No 80.5 93.7 95.9 experience Yes 88.8 1.91 1.74 to 2.10 96.8 2.06 1.74 to 2.43 97.7 1.79 1.48 to 2.18 Young adulthood (19–45) Middle age (45–65) Old age (>65) Variable Characteristics % OR 99% CI % OR 99% CI % OR 99% CI Gender Women 96.2 97.0 97.1 Men 93.4 0.56 0.48 to 0.65 93.0 0.41 0.35 to 0.48 93.2 0.41 0.35 to 0.49 Other/undisclosed 92.8 0.51 0.21 to 1.24 88.8 0.24 0.12 to 0.51 92.0 0.35 0.15 to 0.82 Age (years) >60 94.5 95.3 96.2 41–60 96.5 1.59 1.34 to 1.89 97.2 1.68 1.40 to 2.03 96.8 1.19 0.98 to 1.43 <40 95.4 1.21 0.98 to 1.50 94.3 0.82 0.67 to 1.00 93.3 0.55 0.45 to 0.67 Education Higher education 95.3 95.9 96.2 Lower education 95.6 1.06 0.90 to 1.24 95.6 0.93 0.78 to 1.09 95.3 0.80 0.67 to 0.94 Healthcare No 94.7 95.2 95.4 experience Yes 96.6 1.60 1.36 to 1.89 96.8 1.53 1.29 to 1.82 96.7 1.41 1.19 to 1.68 Univariate OR and 99% CI. % indicates proportion of participants rating this life period as ‘important’ or ‘very important’, with the remainder of participants rating it as ‘not important’ or ‘moderately important’. Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 9 Open access BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by Figure 3 Diseases and disorders believed to be associated with the brain. % indicates proportion of participants rating this disorder or disease as ‘associated with the brain’, with the remainder of participants rating it as ‘not associated with the brain’. AD, Alzheimer’s disease. to 1.78), bipolar disorder (OR 1.29, 99% CI 1.07 to 1.55) respondents interpreted this life period as taking care of and addiction (OR 1.12, 99% CI 0.97 to 1.30) as associ- the mother’s brain during pregnancy. However, regard- ated with the brain. Respondents with an experience of less of how it was interpreted, taking care of the mother’s disease were more likely, as compared with others with no and the fetus’s brain is important and deserves attention. copyright. such experience, to associate disorders such as arthritis Awareness was high of AD and dementia affecting (OR 1.59, 99% CI 1.38 to 1.84), diabetes (OR 1.25, 99% the brain. Our respondents more frequently associated CI 1.15 to 1.37) and hypertension (OR 1.20, 99% CI 1.12 mental disorders such as schizophrenia and depression to 1.29) with the brain (online supplemental material with the brain as compared with neurological disorders 5, section 3). Respondents in a stable relationship were such as stroke and Parkinson’s disease, although it should more likely to associate AD with the brain (OR 1.91, 99% be noted that both classes were most often ranked as CI 1.36 to 2.68) as compared with respondents not in a associated. Since we partly relied on our network of stake- stable relationship. However, this association did not hold holders working in fields of relevance for brain health to when controlling for age and education level. recruit survey respondents, it is likely that our sample was more interested in cognitive and psychological aspects of brain health than the general population. Disorders that DISCUSSION are not defined as brain diseases but have an impact on the Summary of findings brain, such as hypertension, diabetes and arthritis, were To the best of our knowledge, this study was the first perceived to be associated with the brain only to a small and largest survey to investigate public perceptions of extent. Overall, women and highly educated respondents brain health across countries using an online question- more often rated items as important than men and less naire available in multiple languages. Our respondents educated participants. Men and women also differed in considered certain behaviours such as substance use (ie, which factors they considered important for brain health. smoking, drugs and alcohol consumption) and factors such as lifestyle, physical health, genetics and social Relevance to previous research environment important for brain health. Other factors The high ranking of substance use as a factor influencing included, in decreasing order of importance, diet, the brain health is consistent with data from surveys in physical environment and having goals that make life Australia and the USA19 35 but not from previous surveys meaningful, followed by socioeconomic factors such as in Ireland5 or the Netherlands7 where other factors like income, profession and education. The respondents cognitive activity were given more importance. A recent rated all life periods as important for the brain although scoping review of studies examining public perceptions taking care of the brain in the womb (before birth) of risk and protective factors related to cognitive health received relatively less attention. This question aimed to and impairment reported that genetics was the most describe the life period during which one can take care of identified risk factor for AD and dementia.20 In our the fetal brain during pregnancy. It is possible that some survey, genetics was considered highly important for 10 Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 Open access BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by Table 5 Diseases and disorders associated with the brain by demographic groups AD and dementia Schizophrenia Depression Variable Characteristics % OR 99% CI % OR 99% CI % OR 99% CI Gender Women 99.4 96.4 95.6 Men 98.5 0.40 0.29 to 0.56 94.5 0.64 0.54 to 0.75 93.8 0.70 0.60 to 0.81 Other/undisclosed 100 95.2 0.74 0.25 to 2.18 96.0 1.11 0.34 to 3.61 Age (years) >60 99.3 95.1 94.2 41–60 99.4 1.08 0.71 to 1.65 96.6 1.47 1.23 to 1.75 96.1 1.51 1.29 to 1.78 <40 98.0 0.35 0.23 to 0.51 96.3 1.34 1.06 to 1.69 95.4 1.29 1.05 to 1.59 Education Higher education 99.3 96.5 95.6 Lower education 98.6 0.48 0.34 to 0.67 94.5 0.62 0.53 to 0.72 94.0 0.72 0.62 to 0.84 Healthcare No 98.9 95.3 94.6 experience Yes 99.5 2.37 1.57 to 3.56 96.9 1.52 1.28 to 1.81 96.0 1.38 1.18 to 1.61 Bipolar disorder Anxiety Addiction Variable Characteristics % OR 99% CI % OR 99% CI % OR 99% CI Gender Women 93.6 91.4 90.0 Men 87.3 0.47 0.42 to 0.53 89.4 0.79 0.71 to 0.89 84.4 0.60 0.54 to 0.67 Other/undisclosed 93.7 1.01 0.39 to 2.60 95.2 1.88 0.64 to 5.55 90.5 1.05 0.48 to 2.31 Age (years) >60 88.9 89.0 86.6 41–60 94.6 2.17 1.90 to 2.49 92.6 1.54 1.37 to 1.74 89.8 1.37 1.23 to 1.52 <40 93.8 1.90 1.59 to 2.26 92.1 1.44 1.23 to 1.70 90.6 1.50 1.29 to 1.74 Education Higher education 94.0 91.6 90.0 Lower education 87.0 0.42 0.38 to 0.47 89.1 0.75 0.67 to 0.84 85.0 0.63 0.57 to 0.69 Healthcare No 90.0 90.2 86.0 copyright. experience Yes 94.7 2.00 1.76 to 2.28 92.0 1.25 1.11 to 1.40 92.4 1.97 1.77 to 2.20 Stroke Parkinson’s disease Migraine Variable Characteristics % OR 99% CI % OR 99% CI % OR 99% CI Gender Women 89.9 86.9 Men 82.4 0.53 0.48 to 0.58 84.3 0.81 0.73 to 0.89 83.5 Other/undisclosed 89.7 0.98 0.46 to 2.08 84.9 0.85 0.45 to 1.62 79.7 0.78 0.71 to 0.85 Age (years) >60 87.7 86.1 77.6 41–60 89.3 1.16 1.04 to 1.29 87.5 1.13 1.25 to 1.02 86.0 1.78 1.62 to 1.95 <40 84.5 0.76 0.67 to 0.87 83.2 0.80 0.71 to 0.91 88.3 2.18 1.91 to 2.48 Education Higher education 88.3 87.9 84.3 Lower education 86.7 0.87 0.79 to 0.96 82.1 0.63 0.57 to 0.69 78.6 0.69 0.63 to 0.75 Healthcare No 84.5 83.1 79.5 experience Yes 93.0 2.44 2.18 to 2.73 90.9 2.04 1.85 to 2.26 87.2 1.76 1.61 to 1.92 Cancer Hypertension Diabetes Variable Characteristics % OR 99% CI % OR 99% CI % OR 99% CI Gender Women 33.8 33.7 16.7 Men 27.9 0.76 0.70 to 0.82 26.5 0.71 0.66 to 0.77 13.8 0.80 0.73 to 0.88 Other/undisclosed 37.3 1.16 0.72 to 1.88 41.3 1.38 0.86 to 2.20 25.4 1.70 1.00 to 2.89 Age (years) >60 28.5 34.2 15.3 41–60 34.1 1.30 1.21 to 1.40 31.5 0.88 0.82 to 0.95 17.2 1.15 1.05 to 1.27 <40 38.2 1.55 1.41 to 1.70 25.4 0.65 0.59 to 0.72 14.7 0.96 0.84 to 1.09 Education Higher education 34.2 33.5 17.3 Lower education 27.7 0.74 0.68 to 0.79 27.9 0.77 0.71 to 0.83 12.8 0.70 0.64 to 0.77 Healthcare No 27.4 24.9 10.6 experience Yes 39.7 1.74 1.63 to 1.87 42.6 2.24 2.09 to 2.39 24.3 2.71 2.49 to 2.96 Continued Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 11 Open access BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by Table 5 Continued Arthritis Variable Characteristics % OR 99% CI Gender Women 5.1 Men 3.9 0.75 0.63 to 0.89 Other/undisclosed 6.3 1.25 0.49 to 3.23 Age (years) >60 4.5 41–60 5.2 1.15 0.98 to 1.35 <40 4.6 1.01 0.81 to 1.25 Education Higher education 4.9 Lower education 4.6 0.94 0.80 to 1.11 Healthcare No 3.4 experience Yes 7.0 2.12 1.83 to 2.46 Univariate OR and 99% CI. % indicates proportion of participants rating this disorder or disease as ‘associated with the brain’, with the remainder of participants rating it as ‘not associated with the brain’. AD, Alzheimer’s disease. brain health. Likewise, our respondents’ high ranking of attributed high importance to childhood although they sleep corroborates results from a recent UK-­wide survey tended to rank age ranges closer to their own as more in which respondents perceived sleep as important for important. Similarly, we have not found studies specifi- maintaining or improving cognitive skills.36 cally investigating which diseases people associate with Physical health was rated as highly important in our study the brain. Other surveys have shown public awareness of in contrast to what previous surveys found,7 18 19 which dementia,15 as confirmed by our results, despite limited reported limited awareness of how high blood pressure, knowledge of disease mechanisms and risk and protec- copyright. coronary heart disease, obesity and plasma cholesterol tive factors,5 little concern regarding risk of developing levels influence brain health. Although our respondents dementia16 and limited public awareness of the prev- rated physical health as important, paradoxically, they alence and characteristics of mental illnesses such as associated hypertension with the brain to a limited extent. schizophrenia and bipolar disorders.9 10 In our questionnaire, we did not provide any example of what physical health entails, so we do not know exactly Implications for policymakers how our respondents interpreted the question. Results Our sample was highly educated, mostly women prob- across studies may also be difficult to compare due to ably interested in brain health and therefore not repre- differences in the measures and instruments used. Our sentative of the general population. Our survey, however, respondents less often deemed diet to be of very strong highlights that even in such population, there are some importance for brain health relative to other lifestyle knowledge gaps to be filled. Detailed information should factors, in line with previous studies.5 37 Although the be provided about dietary habits and physical activity topic has been little explored, our participants’ limited beneficial for physical health and for the brain. Our emphasis on socioeconomic factors is in line with results findings indicate that people may underestimate the from an Australian survey on cognitive health.19 With importance of risk factors such as diabetes and poor few exceptions, most of our participants resided in high-­ vascular health for brain health, suggesting an avenue income countries or upper middle-­ income countries for improved public health messaging. Previous research such as Turkey. Views regarding the importance of socio- has shown that unmarried people are at higher risk of economic factors for brain health may differ in low and dementia as compared with people living in stable rela- middle-­income countries. tionships.40 We observed that awareness of AD was higher To our knowledge, few studies have investigated what among our respondents living in stable relationships. life periods people consider important for taking care This may suggest the need for targeted brain health of the brain. A recent global Ipsos survey (2021) looked information to single people and those living alone. Men at the perceptions of the importance of early life for a and women differed in their perceptions of factors influ- person’s health and happiness in adulthood38 and found encing brain health. Educational campaigns might need that people did not consider the early (first 5) years as to consider these differences and leverage them for more important for later health, compared with other periods personalised messages. of life. Previous research has shown that focus is often Our respondents made a clear connection between put on old age, as it might be considered as a risk factor mental health and brain health, which may be due to their for cognitive decline.39 In contrast, our respondents experience of the increasing societal burden of mental 12 Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 Open access BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by and addictive disorders.41 The outbreak of the COVID-­19 countries helped adapt the survey to their local circum- pandemic in 2020, with strong implications for mental stances, there is a risk that our international respondents health,42 may also have influenced responses. However, interpreted our questions slightly differently due to we cannot verify this as the survey was anonymous and nuances in translations and the novelty of the concept of no time logs were recorded. Our results suggest that brain health.26 governments should give more attention to the reduction of preventable or modifiable mental health risk factors, for instance, by identifying individuals in early stages of disease or creating social environments promoting CONCLUSIONS AND FUTURE DIRECTIONS psychological well-­being.43 Our findings reflect a relatively good understanding of some facets of brain health. Awareness was higher among Strengths and limitations highly educated female respondents as compared with We believe that our study has several strengths. First, we male and lowly educated respondents. Differences in consulted representatives from patient and civil society perceptions of brain health were noted among specific organisations such as patient organisations and national segments of the population, suggesting that targeted brain councils when developing the survey questionnaire. policy actions towards these groups might be of rele- They are knowledgeable about how the public processes vance. Exploring how perceptions of brain health relate health-­ related information and helped strengthen the to intentions to follow brain-­friendly lifestyles will also be readability and relevance of our questions. The ques- of interest, knowing that such intentions may also depend tions were also piloted in a previous study26 and at several on perceptions of risk46 47 and the socioeconomic, phys- public meetings. Second, we translated the survey into 14 ical and technological contexts in which people navi- languages, made it available online and promoted it in gate.48 Analysis of subsequent questions in this survey will Europe and beyond. This enabled us to achieve a sample provide some answers to this question. size up to 10 times larger than in previous comparable Future research should investigate views on brain health surveys.7 19 44 Third, our survey described brain health as of diverse ethnic groups in Europe, following recent calls encompassing both cognitive and mental health. This for more diversity in research,49 as well as explore views definition was more comprehensive than in other studies, on brain health in non-­Western countries due to cultural which often focused solely on one aspect of brain health variations.50 We did not compare results between coun- copyright. such as cognitive decline. This may make our results more tries due to varying sample size and recruitment strate- relevant when discussing brain health promotion. gies. Future research might investigate whether results Our study has limitations. Our sample is not represen- differ between the three countries with most responses tative of the general population. Our respondents were (UK, the Netherlands, Norway), and how any differ- predominantly highly educated, mostly women from the ence may have implications for brain health promotion oldest segment of population reporting good cognitive at national levels. Future studies should also consider and mental health. This is probably due to our recruit- adopting alternative recruitment techniques and data ment strategy. Several of the Lifebrain cohorts23 as well collection platforms and include more men and respon- as the research registries we used to recruit participants dents more representative of the general population. included more female educated volunteers.34 This may also be because women appear more concerned about Author affiliations 1 Department of Food Safety, Norwegian Institute of Public Health, Oslo, Norway cognitive decline and the maintenance of cognitive 2 Department of Psychology, Center for Lifespan Changes in Brain and Cognition, skills36 45 than men. Our respondents were probably more University of Oslo, Oslo, Norway interested in, and knowledgeable about, brain health 3 Department of Psychiatry, University of Oxford, Oxford, UK than the general population. Although we did not collect 4 Department of Nutrition, Institute of Basic Medical Sciences, Faculty of Medicine, any ethnic data, we suspect that our sample was probably University of Oslo, Oslo, Norway 5 Vitas AS, Oslo, Norway not ethnically and culturally diverse. We also do not know 6 Department of Communication, Norwegian Institute of Public Health, Oslo, Norway whether people in developing countries would mani- 7 Wellcome Centre for Integrative Neuroimaging, Oxford, UK fest different perceptions to brain health, particularly 8 Department of Genetics and Bioinformatics, Norwegian Institute of Public Health, the influence of socioeconomic factors. Another limita- Oslo, Norway 9 tion of our study is that an online survey is more easily Danish Research Centre for Magnetic Resonance, Centre for Functional and Diagnostic Imaging and Research, Copenhagen University Hospital, København, accessed by the most resourceful population groups with Denmark digital connection and competence. We were aware of 10 Cognitive Neuroscience Department, Donders Institute for Brain, Cognition and this limitation when conceiving the study but aimed to Behavior, Radboud University Medical Center, Nijmegen, The Netherlands reach a large international sample and include respon- 11 Faculty of Psychology and Educational Sciences, University of Geneva, Geneva, dents from the Lifebrain consortium. Using an online Switzerland 12 Swiss National Centre of Competence in Research LIVES, Geneva, Switzerland tool was the most appropriate strategy due to our limited 13 Department of Medicine, Faculty of Medicine and Health Sciences and Institute of resources and it facilitated anonymous collection of data. Neuroscience, University of Barcelona, Barcelona, Spain Finally, although great care was taken in the translation 14 Department of Psychiatry, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, and back-­translation process22 and stakeholders in several Amsterdam, The Netherlands Budin-­Ljøsne I, et al. BMJ Open 2022;12:e057999. doi:10.1136/bmjopen-2021-057999 13 Open access BMJ Open: first published as 10.1136/bmjopen-2021-057999 on 18 April 2022. Downloaded from http://bmjopen.bmj.com/ on July 13, 2023 at Sant Paul Hospital Consortia. Protected by 15 Center for Lifespan Psychology, Max Planck Institute for Human Development, REFERENCES Berlin, Germany 1 Raggi A, Leonardi M. Burden of brain disorders in Europe in 2017 16 Department of General and Clinical Psychology, Lesya Ukrainka Volyn National and comparison with other non-­communicable disease groups. J University, Luc'k, Ukraine Neurol Neurosurg Psychiatry 2020;91:104–5. 17 2 National Institute on Aging U. What is brain health? : National Department of Neurology, Hospital de la Santa Creu i Sant Pau, Biomedical Institute on Aging; 2019. Available: https://brainhealth.nia.nih.gov/ Research Institute Sant Pau, Universitat Autònoma de Barcelona, Barcelona, Spain [Accessed 20 May 2019]. 18 Women’s Brain Project, Guntershausen, Switzerland 3 Mintzer J, Donovan KA, Kindy AZ, et al. Lifestyle choices and brain health. Front Med 2019;6:204. 4 Livingston G, Sommerlad A, Orgeta V, et al. Dementia prevention, Acknowledgements We are grateful for the valuable help we received from intervention, and care. Lancet 2017;390:2673–734. many people to develop and disseminate the survey. This includes, but is not 5 Glynn RW, Shelley E, Lawlor BA. Public knowledge and limited to, the Lifebrain research staff, the stakeholders who participated in understanding of dementia-­evidence from a national survey in Lifebrain workshops and public lectures, representatives from the Norwegian Ireland. Age Ageing 2017;46:865–9. Brain Council, the Belgian Brain Council, the German Brain Council, the Brain 6 Rosato M, Leavey G, Cooper J, et al. Factors associated with public Foundation Netherlands (​Hersenstichting.​nl), the Swedish Brain Foundation, the knowledge of and attitudes to dementia: a cross-­sectional study. PLoS One 2019;14:e0210543. Women’s Brain Project, the National University of Ostroh Academy in Ukraine, Join 7 Heger I, Deckers K, van Boxtel M, et al. Dementia awareness and Dementia Research, Hersenonderzoek, patient organisations and professional risk perception in middle-­aged and older individuals: baseline results societies in Europe and elsewhere. We thank the survey respondents for their of the MijnBreincoach survey on the association between lifestyle contribution. and brain health. BMC Public Health 2019;19:678. 8 Alzheimer’s Research UK. Dementia attitudes monitor. wave 1 2018. Contributors IBL, AMM, BBF, KPE, CAD, RBC, EZ, WFCB, KSM, AMF, RAK, PG, DB-­F, Shaping breakthroughs in public understanding of dementia and LN, CS-­P, KBW, SD, LZ, MFI and MTF were involved in the design and data collection attitudes to research, 2018. of the study. AMM, KPE, ØS and EZ had full access to the raw data and conducted 9 Durand-­Zaleski I, Scott J, Rouillon F, et al. A first national survey of the statistical analysis. IBL, BBF, CAD, NAGF and RBC made substantial contribution knowledge, attitudes and behaviours towards schizophrenia, bipolar to the analysis of the data. IBL drafted the manuscript. IBL, AMM, BBF, KPE, CAD, disorders and autism in France. BMC Psychiatry 2012;12:128. RBC, EZ, NAGF, ØS, WFCB, KSM, AMF, RAK, PG, DB-­F, LN, CS-­P, KBW, SD, LZ, MFI 10 Cadge C, Connor C, Greenfield S. University students' understanding and MTF substantively revised the manuscript and approved the submitted version. and perceptions of schizophrenia in the UK: a qualitative study. BMJ IBL is the guarantor for the article. Open 2019;9:e025813. 11 Tomat N, Perovnik M, Vidmar G, et al. Lay public view of Funding This research was funded by the EU Horizon 2020 Grant: Healthy minds neuroscience and science-­based brain health recommendations in 0–100 years: Optimising the use of European brain imaging cohorts (Lifebrain) Slovenia. Front Public Health 2021;9:690421. (grant agreement number: 732592). 12 Niechcial MA, Vaportzis E, Gow AJ. People’s views on preserving thinking skills in old age. Educ Gerontol 2019;45:341–52. Competing interests None declared. 13 Bosco A, Jones KA, Di Lorito C, et al. Changing lifestyle for dementia risk reduction: inductive content analysis of a national UK survey. Patient and public involvement Patients and/or the public were involved in the PLoS One 2020;15:e0233039. design, or conduct, or reporting, or dissemination plans of this research. Refer to 14 Rosenberg A, Coley N, Soulier A, et al. Experiences of dementia and copyright. the Methods section for further details. attitude towards prevention: a qualitative study among older adults Patient consent for publication Not required. participating in a prevention trial. BMC Geriatr 2020;20:99. 15 Anderson LA, Day KL, Beard RL, et al. The public's perceptions Ethics approval This study involves human participants. The survey was reviewed about cognitive health and Alzheimer's disease among the U.S. by the Regional Committees for Medical and Health Research Ethics in Norway population: a national review. Gerontologist 2009;49(Suppl 1):S3–11. (2017/653 REK SørØst B) and approved for exemption from ethics approval 16 Smith BJ, Ali S, Quach H. Public knowledge and beliefs about according to the Norwegian Health Research Act. In addition, the survey was dementia risk reduction: a national survey of Australians. BMC Public Health 2014;14:661. approved by the University of Oxford Medical Sciences Interdivisional Research 17 Kim S, Sargent-­Cox KA, Anstey KJ. A qualitative study of older and Ethics Committee (R67364/RE001) and the Medical Ethics Review Committee of VU middle-­aged adults' perception and attitudes towards dementia and University Medical Center in the Netherlands as required for dissemination in the dementia risk reduction. J Adv Nurs 2015;71:1694–703. country’s research networks. Ethics approval was not required for dissemination 18 Barak Y, Gray AR, Rapsey C, et al. The dunedin dementia risk in the other Lifebrain partner countries. Participants gave informed consent to awareness project: pilot study in older adults. Int Psychogeriatr participate in the study before taking part. 2020;32:241–54. 19 Hosking DE, Sargent-­Cox KA, Anstey KJ. An Australian survey of Provenance and peer review Not commissioned; externally peer reviewed. cognitive health beliefs, intentions, and behaviours through the adult life course. Prev Med Rep 2015;2:498–504. Data availability statement Data are available upon reasonable request. The data 20 Friedman DB, Becofsky K, Anderson LA, et al. Public perceptions will be made available upon request until its deposited in an open science platform about risk and protective factors for cognitive health and impairment: (deposit planned to take place before June 30). a review of the literature. Int Psychogeriatr 2015;27:1263–75. Supplemental material This content has been supplied by the author(s). It 21 The Lifebrain Consortium. Lifebrain, 2018. Available: http://www.​ lifebrain.uio.no/ has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have 22 Budin-­Ljøsne I, Friedman BB, Suri S, et al. The global brain health been peer-­reviewed. Any opinions or recommendations discussed are solely survey: development of a Multi-­Language survey of public views on those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability brain health. Front Public Health 2020;8:387. and responsibility arising from any reliance placed on the content. Where the 23 Walhovd KB, Fjell AM, Westerhausen R, et al. Healthy minds from content includes any translated material, BMJ does not warrant the accuracy and 0-­100 years: Optimising the use of European brain imaging cohorts reliability of the translations (including but not limited to local regulations, clinical ("Lifebrain"). Eur Psychiatry 2018;47:76–7. guidelines, terminology, drug names and drug dosages), and is not responsible 24 Lifebrain. What motivates people to look after their brain health? for any error and/or omissions arising from translation and adaptation or Insights from the global brain health survey. Oslo: Lifebrain, 2022. ISBN: 978-­82-­8406-­267-­9, 2022. otherwise. 25 Lifebrain. How to promote citizens’ brain health? Insights from the Open access This is an open access article distributed in accordance with the Global Brain Health. Survey on citizen’s perceptions of brain health Creative Commons Attribution Non Commercial (CC BY-­NC 4.0) license, which interventions”. Lifebrain, 2021. ISBN: 978-­82-­8406-­223-­5. permits others to distribute, remix, adapt, build upon this work non-­commercially, 26 Friedman BB, Suri S, Solé-Padullés C, et al. Are people ready for personalized brain health? Perspectives of research participants in and license their derivative works on different terms, provided the original work is the Lifebrain Consortium. Gerontologist 2020;60:1050–9. properly cited, appropriate credit is given, any changes made indicated, and the use 27 Mauguière F, Trejo J-­L, Andjus P, et al. Ten priorities for national brain is non-­commercial. 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