Y. Barak, C. Rapsey, K.M. Scott
Otago University Medical School, Department of Psychological Medicine, Dunedin, New Zealand.
Corresponding Author: Yoram Barak, MD, MHA, Dept. Psychological Medicine, Dunedin School of Medicine, PO Box 56, Dunedin, New Zealand, P: +64 3 4740999 ext. 58117, E-mail: Yoram.Barak@otago.ac.nz
J Prev Alz Dis 2021;
Published online December 10, 2021, http://dx.doi.org/10.14283/jpad.2021.66
Clinicians and scientists suggest that up to 40% of dementia cases are potentially preventable. Data on awareness of dementia risk and protective factor among older adults can inform and facilitate designing educational interventions to prevent dementia. We aimed to quantify awareness of dementia risk and protective factors using a telephone survey. The modified Lifestyle for Brain Health scale was used to assess dementia risk and prevention knowledge. A representative sample of 1,005 older adults, mean age 64.02 (standard deviation + 1.4; range: 50-74 years) completed the survey (77% response rate). Under representation of non-European ethnicities was noted. Participants Respondents were all New Zealanders, more women (n=518, 51.5%), mostly European (n=921, 91.6%) and well educated (n=347, 34.5%, university or post-graduate degree). Only 6/14 modifiable risk or protective factors for dementia were adequately identified. Three clusters of dementia literacy were identified: psychosocial, medical and activities. These findings support personalizing dementia prevention efforts via targeted educational packages.
Key words: Literacy, dementia, survey, clusters.
The most recent data indicate that, by 2050, the prevalence of dementia will double in Europe and triple worldwide. Multidomain lifestyle-based prevention trials suggest cognitive benefits in participants with an elevated modifiable dementia risk at baseline (1). In some countries, including the United States, the United Kingdom, Sweden, the Netherlands, and Canada decline in age-specific incidence or prevalence of dementia is reported emphasizing the potential of prevention strategies (2).
Prevention of dementia cannot rely on a “magic bullet.» Areas wherein there is some potential are consistent with public health types of messages that we hear all the time. “Live a healthy life, eat a good diet, stay cognitively active and engage socially”. The Lancet Commission concluded that our best chance for preventing dementia is a “life course” approach. This strategy acknowledges that factors throughout life influencing dementia development may be modifiable and probably are susceptible to public health interventions (3, 4). However, levels of literacy and deficiencies in awareness of dementia prevention strategies need to be researched in the general older adult population in order to produce effective psychoeducational messages. The older adult population may be a group for which messages about dementia prevention are particularly salient and thus this group may be more willing to undertake behavioural change (5). To effectively target specific population groups, we need to understand levels of literacy and deficiencies in awareness of dementia prevention strategies. In an incisive editorial accompanying a recent meta-analysis of the main dementia prevention strategies for the U.S. Preventive Services Task Force (USPSTF) and for public health messaging the author notes that when people ask him how to prevent dementia, they often want a simple answer, such as vitamins, dietary supplements, or the latest hyped idea (6).
The prospect of potential cognitive decline and the development of dementia is a significant source of anxiety for many people as they age, raising deep concerns about their future independence and quality of life. Yet for those interested in taking active steps to maintain, to the extent possible, their brain health, it is difficult to know how best to invest their time and resources. A bewildering number of products and behaviours have been touted as potential preventive measures, but very few have been subjected to rigorous testing for effectiveness. In 2018 the National Poll on Healthy Aging report presented findings from a nationally representative USA household survey undertaken two to three times a year with a sample of approximately 2,000 members age 50–80 (7, 8). Worries about dementia and interest in promoting brain health are both high. About half of respondents thought they were likely to develop dementia in their lifetime. However, just 5% said they had ever discussed ways to prevent dementia with their doctor. The poll findings suggest that many older adults could benefit from discussing prevention strategies with health care providers (7, 8).
In the last decade researchers elucidated the prevalence of limited health literacy and the relationship of limited health literacy with health behaviours, health outcomes, and medical costs (9). Health literacy was also shown to improve with educational programs but decline with aging (10). Education programs and interventions that foster exposure to dementia factual knowledge, particularly for those with limited education, can help reduce this negative view of dementia and foster healthy lifestyles (11, 12). Literacy plays an important role in Alzheimer’s disease and related dementias, it has been shown to predicts incident Alzheimer’s disease dementia and Alzheimer’s disease pathology in community dwelling older persons and literacy was found to be a potential modifier of cognitive decline (13, 14).
Despite the importance of health literacy, in one study, almost 1 in 2 Europeans had insufficient or problematic health literacy on a large recent survey (15). In particular, there is a need to raise awareness of dementia among those with lower educational achievement (16).
Less is known about how literacy is being used and defined in dementia studies with a recent comprehensive study demonstrating that systematic assessment of health
literacy in at-risk population for Alzheimer’s disease is sparse (17). Health literacy and dementia literacy are the most often used terms (18). There is a need to raise awareness of dementia amongst less educated groups (16). Public health policy makers should thus consider the findings that almost 1 in 2 Europeans had insufficient or problematic health literacy on a large recent survey and thus take measures to improve health literacy in order to achieve positive behavioural change (15).
We aimed to use the modified Lifestyle for Brain Health (mLIBRA) reflecting potential for dementia prevention, to assess knowledge about dementia risk and protective factors literacy in a probabilistic sample of older adults living independently in the community in New Zealand. Our previous work demonstrated the existence of three knowledge clusters amongst older adults surveyed in unselected focus groups about brain health (19). If supported by the present large representative sample this will be the basis for designing a dementia primary prevention effort for the benefit of older New Zealand adults. Our ability to “personalize” future programmes according to the target population’s dementia awareness clusters will be a unique advantage compared to other available programmes.
For purposes of this study we used the mLIBRA scale (19). Briefly, this scale incorporates the American Institute for Cancer Research commissioned surveys format (20) based on the LIBRA construct (21). We added two novel factors, midlife hearing loss and social isolation, factors that were emphasized in the Lancet commissions report but not included in the original LIBRA scale (22).
The mLIBRA includes questions about the following risk or protective factors several of which are purposefully wrong in order to ensure participants do not reply at random: low or moderate alcohol consumption, coronary heart disease, oral hygiene, physical inactivity, renal dysfunction, diabetes, high cholesterol, curcumin, midlife hearing loss, smoking, obesity, hypertension, social isolation, nutrition (Mediterranean diet was a secondary enquiry), depression, prescription drugs, high cognitive activity, and low unsaturated fat intake.
For detailed description of the development of the mLIBRA scale, see Barak et al., 2019 (19).
The National Research Bureau (www.nrb.co.nz) was employed to carry out a telephone survey using the mLIBRA scale. National Research Bureau is an independent New Zealand based research company. It has been contracted in the past by the New Zealand Ministry of Health to conduct nationwide health surveys (23). National Research Bureau Ltd is a member of ESOMAR; an international organisation that advances ethics and effectiveness in gathering research, including social research.
All New Zealand (NZ) citizens, 18 years or older, are required by law to be enrolled on one of the two electoral rolls. The general roll is open to all NZ citizens, while those of Māori descent (the indigenous people of NZ) can choose to enrol on either the general or the Māori electoral roll. Our sampling frame was adults aged 50 to 74 years old from both electoral rolls. This sample was selected using the random digit telephone dialling, public directories, and sample quotas; population proportional ‘interview’ quotas set to reflect the sex, education, ethnicity and rural or urban residence of the general population within this age group (24).
Participants were consenting older adults aged 50 to 74 years and then the eligible respondent in the household was the person in that age group with the last birthday, that is the oldest eligible in the household.
Data were collected via telephone administered interviews, conducted by trained interviewers. Each household was called up to four times, that is, an initial call, followed by three call-backs, before replacing that household with another household. Call-backs were made on different days, and at different times of the day, to maximise the chance of contacting the eligible respondent.
Respondent characteristics are described using summary statistics and the percentages affirming each belief are presented. Respondents were prompted specifically about the mLIBRA’ s factors as follows: “Which of the following do you believe has a significant effect on whether or not the average person develops dementia?” A clarifying question about the direction of the association with alcohol was used and asking about diet as a risk factor and awareness of the Mediterranean diet as separate but related question. Adequate health literacy was defined as 75% or higher correct identification of risk or protective factors in line with the “Test of Functional Health Literacy in Adults”; TOFHLA, (25).
For categorical demographic variables, Chi-squared (without continuity correction) or Fisher’s Exact Tests as appropriate (the latter used instead of the former when more than 20% of cells had expected counts below 5) and, for continuous demographics variables, Kruskal-Wallis tests were used to assess associations involving ratings of prompted risk and protective factors.
Hierarchical clustering of variables was used to explore groupings of prompted risk and protective factors. Analyses were conducted using R 4.0.3 (R Core Team, 2020), using the package ClustOfVar (version 1.1) for the hierarchical cluster analyses of the variables, where clusters of variables are identified such that all variables in each cluster are correlated with the first principal component of all variables in that cluster. Literacy was dichotomised for the three clusters identified (medical, activities, and psychosocial) and overall. This was based on respondents affirming over half of the items (at least 5 out of 9, 2 out of 2, 2 out of 3, and 8 out of 14 respectively). Stata 16.1 was used to examine multivariable Poisson regression models for these binary outcomes, using robust standard errors to estimate relative risks for achieving over 50% literacy for cluster identification with independent variables of gender (two levels), age (five levels: 50–54, 55–59, 60–64, 65–69, and 70–74), prioritised ethnicity (three levels: Māori prioritised over Other prioritised over European), education (four levels: not completing secondary school, completing secondary school, university/polytech/college of education/nursing, and other post-secondary education), and location (five levels) simultaneously. Missing data was minimal (all risk and protective factor questions were answered by all participants and six participants had one or more demographic variable missing) and no formal treatment of this was applied. Statistical significance was determined by two-sided p<0.05. No adjustment for multiple comparisons was made as this was regarded as an exploratory study to generate hypotheses for further study and caution should be used when interpreting marginally significant results.
Compliance with Ethical Standards
Ethical approval for the proposed survey was obtained from the University of Otago Ethics Committee and the Department of Psychological Medicine Ethics Committee, approval # D17/231.
One thousand and three hundred households were contacted and asked to take part. The response rate was 77.3%, yielding a sample of 1005. The sample size herein provides + 3.1% margin of error for estimated proportions at 95% confidence level. The interviewing period was from Thursday 16th November to Tuesday 5th December, 2018. The average interview duration for the survey was 11 minutes. The response rate for this survey was 77.3%. This response rate is in line with using telephone interviews to reduce nonresponse bias. Nonresponse to phone surveys is less directly related to survey content and thus telephone interviews not only increase response rates but also can produce less biased samples than mailed surveys (26).
Of the 1,005 respondents included in our present analysis there were slightly more women (n=518, 51.5%), most were European (n=921, 91.6%) and well educated (n=347, 34.5% with an academic university degree). A little over half of the sample were from a large urban centre (n=540, 53.7%) and the rest from rural communities.
The majority 921 (91.6%) were European with 35 identifying as Māori, (the indigenous people of New Zealand, 3.5%), 42 identifying as “another ethnic group”, 4 identifying as Chinese, 1 as Indian and 2 refusing ethnicity disclosure. It is of note that the sample herein analyzed has fewer Maori and Asian New Zealanders than expected based on census data.
Education levels were high with 552 having high school education (secondary school, 54.9%), 245 had post-secondary qualifications (BA, BSc or tertiary learning, 24.4%), 102 had post-graduate qualifications (MA, MSc or PhD 10.1%), 87 had a diploma (trade, technical or professional qualifications, 8.6%) and only 13 participants had primary or intermediate school education.
See table 1 for sample characteristics and data from Statistics NZ and key data from the New Zealand Health Survey.
* = Expected numbers based on Statistics NZ The Health of New Zealand Adults 2011/12: Key Findings of the New Zealand Health Survey. In: MOH., ed. Wellington: Government of New Zealand, 2012; ** = Participants were able to identify with more than one ethnic group.
Only for 6/14 factors were adequate health literacy levels demonstrated; that is greater than 75% of participants correctly endorsed these factors as significantly affecting development of dementia (25, 27). These factors were moderate alcohol consumption (89.6%), social isolation (89.1%), depression (86.4%), cognitive activity (82.2%), physical inactivity (77.9%) and nutrition (77.2%).
The lowest literacy levels were for the following risk factors: heart disease (40.6%) and high serum cholesterol levels (46.4%). Moderate but insufficient literacy, in the range of 50% to 74%, was found for the following risk factors: hearing impairment, diabetes, hypertension, obesity and smoking.
Using binary versions of the prompted risk and protective factors where “Yes” (aware of this as a factor) and “No or Don’t Know” (not aware) were the possible answers to the prompted questions, a dendrogram illustrating the clustering of the variables revealed three clusters (Figure 1) as follows:
“Medical” health concepts – this cluster included respondents who identified the following as associated with brain health: Diet, Obesity, Hypertension, High Cholesterol, Smoking, Low or Moderate Alcohol Consumption, Renal Dysfunction, Coronary Heart Disease and Diabetes.
“Activities” – this cluster included respondents who identified the following as associated with brain health: Physical Exercise and Brain Engagement.
“Psychosocial” awareness – this cluster included respondents who identified the following as associated with brain health: Midlife Hearing Loss, Depression and Social Isolation.
Participants who scored higher than 50% on all variables included in each cluster more frequently endorsed the psychosocial cluster (841 participants), followed by the activities cluster (715 participants) and the medical cluster (633 participants).
Several findings are of interest when analyzing the characteristics of participants who scored in the “moderate” or “high” literacy range for the different clusters of knowledge (27). There were no age or gender differences in literacy score in any of the clusters (p=0.915 and p=0.831, respectively).
European NZs scored higher on knowledge in the ‘psychosocial” cluster (p=0.019).
The vertical scale represents the clusters. The horizontal axis on the dendrogram represent the distance or dissimilarity. Each joining (fusion) of two clusters is represented on the diagram by the splitting of a vertical line into two vertical lines. The vertical position of the split, shown by a short bar gives the distance (dissimilarity) between the two clusters. The dissimilarity is considered “very good” if the distance on the vertical scale is 1.0 or greater.
Urban participants and participants with higher education attainment demonstrated higher literacy scores on both the “activities” cluster knowledge and the total mLIBRA (p=0.001 and p=0.018, respectively).
In the present survey brain health literacy was assessed in a large representative sample of older adults. Overall, literacy was inadequate with less than half of variables associated with brain health correctly identified and understood. However, in line with previous studies by our group (19, 28) the present representative survey supports the existence of three distinct brain health literacy clusters in the older adults’ general population. Briefly, we have introduced the mLIBRA to a sample of 304 eligible self-selected participants. The older adults in our previous study are not adequately knowledgeable about dementia risk and protective factors. Nevertheless, three clusters of brain health literacy were identified: psychosocial, medical, and activities (19). The existence of distinct knowledge clusters in the general population is a unique finding that has the potential to support designing educational messages tailored for each cluster.
Knowledge about people’s views around cognitive ageing can inform strategies and campaigns to encourage engagement in brain-healthy lifestyle. Public perceptions of such lifestyles could be used to communicate effectively about maintaining cognitive skills. This approach was recently reviewed with the goal of personalising recommendations for risk reduction in line with the premise of the present study (29). Our findings need to be discussed in light of two recent surveys, from Germany and Holland that are informative and relevant for comparison (30, 31). Cross-sectional data from the 2012 population-based German Socio-Economic Panel analysed replies of 1,542 adult participants whose mean age was 51.1 years. An increased perceived modifiability of memory deterioration was associated with higher education, and not being employed, but not health-related variables. The authors concluded that focusing on these modifiable factors in public health messaging may be beneficial in facilitating a change in lifestyle behaviours (31). The online Dutch survey is more similar to the present survey herein discussed. This study investigated dementia literacy and knowledge of modifiable risk and protective factors in a population-based sample. Participants were 590 community dwelling people between 40 and 75 years old. Dementia awareness and knowledge about 12 risk and protective factors was assessed. The majority of participants (56%) were unaware of a relationship between lifestyle and dementia risk. Most individuals identified only three factors – low cognitive activity, physical inactivity and unhealthy diet – as dementia risk factors. Particular gaps in knowledge existed with regard to major cardiovascular risk factors such as hypertension, hypercholesterolemia and coronary heart disease (30). The gap in public knowledge about the major cardiovascular risk factors has also been reported in a large Australian survey (32). It is of interest that of the nine items that the NZ and Dutch survey had in common, New Zealand older adults demonstrated a uniformly higher level of literacy compared to the Dutch participants. Although we emphasise that the level of literacy in this New Zealand sample was not high. The only item where both samples showed similar literacy was “cognitive activity” with 80% and 82% of Dutch and New Zealand participants respectively demonstrating literacy. Education levels and gender are very similar between the present survey and the Dutch participants and thus cannot explain the striking difference in literacy levels. The difference in brain health literacy may be related to accessibility of information about brain health as 70% of the Dutch participants stated they would like more information about lifestyle behaviours and brain health (30). In New Zealand, health literacy is incorporated as a key priority in the New Zealand Health Strategy 2016–2026 and is easily accessible (33). The 2016 New Zealand Health Strategy refreshes the previous strategy, developed in 2000. It was developed with the help of sector leaders, independent reports, extensive public consultation, and was informed by other government programmes and initiatives. Consultation included electronic and face-to-face public forums, Hui Fono – a unique space that brings together Māori and Pasifika working in adult and community education – and written submissions. The summaries and detailed strategic plan are freely available for download from the Ministry of Health website (34).
Focusing on cognitive health promotion among older adults accentuates the importance of scrutinizing public views of dementia and the relevant risk and protective factors. Health beliefs have long been recognized as an important factor in risk self-management and recent studies demonstrate that is true when “dementia worry” is examined (35, 36). A large scale effort to reduce the number of people developing dementia was piloted by several NGOs in the UK as part of the NHS Health Check programme – a free health check-up for adults in England aged 40-74 years, designed to reduce risk of stroke, kidney disease, heart disease, type 2 diabetes or dementia. Eighty percent of participants said the right advice would affect their behaviour. Empowering older adults to engage in healthy behaviours is crucial if we are to reduce the number of people developing Alzheimer’s disease (37).
The present survey has several limitations that must be acknowledged. Our findings can only be extrapolated to the NZ European majority of the population, but not to the ethnic minorities who were underrepresented in the survey. Telephone survey is less sensitive and less exploratory than face-to-face interview. The study design is limited in terms of the collection of sociodemographic and lifestyle data. Finally, the a-priori limiting of our participants age range places our findings in the older adults niche and cannot be generalized to the oldest old or to young adults.
Clusters of knowledge have been globally studied and analyzed with focus on health characteristics, health literacy needs and development of effective interventions (38-40). We may thus tentatively suggest that identifying clusters of dementia literacy can aid in creating more efficient prevention interventions (41).
Defining health literacy from a public health perspective places greater emphasis on the knowledge and skills required to prevent disease and for promoting health. Mass media is making information about brain-healthy behaviours accessible to a large portion of the population in high-income countries (3, 42). However, knowledge about brain health literacy among those living in low- and middle-income countries is lacking, presenting challenges for the development of National action plans consistent with World Health Organization directives. A systemic review of thirty-four surveys conducted in Europe, the US, Eastern Asia, Israel, and Australia demonstrated that knowledge about the potential for dementia prevention and treatment remains poor but may be improving over time (43). The findings of the present survey emphasize possible lacunas in brain health knowledge. However, the clusters of awareness around risk and protective factors, medical, activities, and psychosocial, hold promise for personalized health information. These clusters may also be useful as composite endpoints for trials examining the effects of educational interventions on facets of awareness (44). The present survey identifies clusters of brain health literacy that could be an interesting and potentially valuable starting point for interventions aiming to increase awareness and knowledge about brain health.
Funding: The source of financial support for the research: «New Academic Grant by the University of Otago».
Conflict of Interest: The authors have no conflict of interest to report.
Description of authors’ roles: Y Barak designed the study and wrote the paper. C Rapsey and K Scott advised on survey design and assisted with writing the article.
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