The Drivers of Conversations About Dementia Risk Reduction: A Qualitative Study.

Dementia prevention is an area of health where public knowledge remains limited. A growing number of education initiatives are attempting to rectify this, but they tend to reach audiences of limited size and diversity, limiting intervention-associated health equity. However, initiative participants tend to discuss these initiatives and the information they contain with members of their social network, increasing the number and diversity of people receiving dementia risk reduction information. In this qualitative study, we sought to understand the drivers of this information sharing. We interviewed 39 people from Tasmania, Australia who completed the Preventing Dementia Massive Open Online Course in May 2020. We identified themes from responses to semi-structured interview questions using reflexive thematic analysis. We identified three key drivers of information sharing: participants' personal course experiences; participants finding information sharing opportunities with people they expected to be receptive; and conversation partners' responses to conversation topics. These drivers aligned with existing communication theories, with dementia-related stigma effecting both actual and perceived conversation partner receptivity. Understanding the drivers of information sharing may allow information about dementia risk reduction, and other preventative health behaviors, to be presented in ways that facilitate information diffusion, increasing equity in preventative health education.

Interpersonal communication may improve equity in dementia risk education.

ISSUE ADDRESSED: Encouraging people to adopt life-long habits that reduce dementia risk is necessary to manage the growing global prevalence of this condition and is, therefore, a global health priority. Current initiatives promoting risk-reducing behaviour primarily attract participants from a limited range of backgrounds, even if widely available. This may inadvertently increase health inequities, as the people who are most likely to develop dementia are the people who are least involved in risk-reduction initiatives. Interpersonal communication can effectively disseminate health messages to demographically diverse populations and may, therefore, broaden the reach of dementia risk-reduction information. METHODS: Coding reliability thematic analysis was used to categorise reports of information sharing provided by participants from one global online dementia risk education initiative, the Preventing Dementia Massive Open Online Course, or MOOC. These reports of information sharing were provided in response to the feedback question: "If you have already applied your MOOC learning, please tell us how." RESULTS: Information was reportedly shared with a wide range of people, including those from demographic groups that are under-represented among Preventing Dementia MOOC participants. Information about specific risk factors was shared, along with general information about the course and/or dementia risk reduction. Some participants also reported that the people they shared information with were initiating risk-reducing behaviours. CONCLUSION: Interpersonal communication has the potential to disseminate dementia risk reduction information to, and promote behaviour change among, a broad group of people at risk of dementia, thereby increasing equity in dementia risk education.

Broadening the reach of dementia risk-reduction initiatives: strategies from dissemination models.

BACKGROUND: Modifiable risk factors for dementia account for 40% of cases worldwide and exert impacts on risk across the life course. To have maximal public health impact, dementia risk-reduction initiatives need to reach a large and diverse audience, including people from a wide range of ages and socioeconomic backgrounds. Currently, dementia risk-reduction interventions primarily reach a narrow audience, consisting largely of highly educated older adults from high income countries. METHODS: In this commentary, we review established dissemination models to identify strategies that could be used to extend and broaden the reach of dementia risk-reduction initiatives. Three potential reach-broadening strategies can be identified from these models: engaging with distinct user groups; focusing on interpersonal communication; and utilising dissemination agents. RESULTS: Engaging with distinct user groups and utilising dissemination agents show promise for broadening the reach of dementia risk-reduction initiatives, while interpersonal communication has received limited attention in this context. Further evaluation of the impact of interpersonal communication may provide avenues to take advantage of this dissemination method. CONCLUSIONS: Based on the reviewed models and data from current risk-reduction initiatives, we suggest that utilising all three of these strategies may most effectively broaden the reach of dementia risk-reduction initiatives. This may promote risk reduction among a larger and more diverse audience, more equitably reducing the global impact of dementia.

Reasons for non-completion of a massive open online course about multiple sclerosis: A mixed methods study.

BACKGROUND: Massive open online courses (MOOCs) have grown rapidly in popularity since becoming available worldwide in 2012. There are currently > 30,000 MOOCs available from > 900 universities. However, despite their global reach, MOOCs typically have low completion rates. OBJECTIVE: To evaluate reasons for non-completion among enrolees in the Understanding Multiple Sclerosis (MS) MOOC. METHODS: This was a mixed methods study evaluating quantitative and qualitative data collected in an online questionnaire administered to Understanding MS enrolees who did not complete the course. The quantitative data was evaluated using frequencies, percentages, means, and standard deviations. The qualitative data was assessed using textual analysis. RESULTS: We recruited 397 participants (4.5% of non-completers). Both the qualitative and quantitative data suggests that the primary reasons for non-completion were time constraints and/or limitations. Some of these were exacerbated by the COVID-19 pandemic. People with MS also cited MS-related symptoms as a reason for non-completion. Suggested changes to the course reflected these results and included extending the course open period and making it self-paced. CONCLUSION: Although it was impossible to determine if study participants were representative of all non-completers due to selection bias, the results provide useful information for developing future MS educational resources. Accessibility, particularly addressing potential challenges related to MS symptoms and time constraints, should be a primary consideration when developing an educational resource for the MS community.

Educating the masses to address a global public health priority: The Preventing Dementia Massive Open Online Course (MOOC).

Dementia is a global public health priority and risk reduction is an important pillar of the public health response. While 40% of cases are estimated to be attributable to modifiable health and lifestyle risk factors, public awareness of the evidence is low, limiting peoples' opportunity to adopt risk-reducing behaviours. To address this gap, we designed, implemented, and evaluated an educational intervention, the Preventing Dementia Massive Open Online Course (PDMOOC). This mixed-methods study examined the reach and impact of the free and globally available PDMOOC, to assess its potential to provide effective dementia risk reduction education to a broad international audience. Over 100,000 individuals participated in the PDMOOC across seven iterations from 2016 to 2020, with 55,739 of these consenting to participate in research. Their mean age was 49 years (SD = 15), they came from 167 different countries, and the majority were female (86%), had completed post-secondary education (77%), lived in high-income countries (93%) and worked in health care and social assistance (63%). This demographic profile changed across time, with more men, people with higher education and people from low- and middle-income countries participating in recent course iterations. Two-thirds of participants completed the PDMOOC; completion was associated with being aged 50 to 70 years, residing in a high-income country, having tertiary education, and working in the health sector. Participants reported high levels of satisfaction with the PDMOOC, improved dementia risk reduction understanding and self-efficacy, increased motivation to maintain healthy lifestyles, and, importantly, application of their learning to health behaviour change with the potential to reduce their dementia risk. The PDMOOC educated a large global audience about dementia risk reduction, which contributed to participants making risk-reducing behaviour changes. This suggests MOOCs can be a successful public health strategy to improve dementia risk reduction understanding.

Development and psychometric evaluation of the Dementia Public Stigma Scale.

OBJECTIVES: Dementia is a stigmatised condition and dementia-related stigma is associated with low self-esteem, poor psychological wellbeing, social isolation and poor quality of life in people living with dementia and their families. There is, however, a lack of valid measures that accurately quantify dementia-related stigma in the general public. This study reports the initial psychometric evaluation of a new tool designed to measure dementia-related public stigma amongst community dwelling adults. METHODS: A sample of 3250 individuals aged 18 and over completed an online survey on their beliefs and feelings regarding dementia and people living with dementia, and their behavioural intentions towards people living with dementia. Exploratory factor analysis (EFA) using Maximum Likelihood with oblique rotation was performed to extract factors. Confirmatory factor analysis (CFA) was used to confirm the factor structure using goodness-of-fit index (GFI), the comparative fit index (CFI), and the root mean square error of approximation (RMSEA) to evaluate the model fit. Internal consistency was measured for the final scale version. RESULTS: EFA resulted in a 16-item, 5-factor model (Fear and discomfort, Negative perceptions, Positive perceptions, Burden, and Exclusion) that explained 50.43% of the total variance. The CFA-estimated model demonstrated a good fit; all fit indices were larger than 0.95 (GFI = 0.967, CFI = 0.959) and smaller than 0.05 (RMSEA = 0.048). The final scale showed moderate to high reliability scores ranging from α = 0.738 to 0.805. CONCLUSIONS: The Dementia Public Stigma Scale is a tool with reliability, and some demonstrated validity. This scale can be used to measure the public stigma of dementia amongst adults and may be used in the development and evaluation of interventions aimed at dementia-related stigma reduction.

Assessing the Impact of Online Health Education Interventions From 2010-2020: A Systematic Review of the Evidence.

OBJECTIVE: Systematically review the evaluation and impact of online health education interventions: assess approaches used, summarize main findings, and identify knowledge gaps. DATA SOURCE: We searched the following databases: EMBASE, ERIC, MEDLINE, and Web of Science. STUDY INCLUSION AND EXCLUSION CRITERIA: Studies were included if (a) published in English between 2010-2020 in a peer-reviewed journal (b) reported an online health education intervention aimed at consumers, caregivers, and the public (c) evaluated implementation OR participant outcomes (d) included ≥ 100 participants per study arm. DATA EXTRACTION: Two authors extracted data using a standardized form. DATA SYNTHESIS: Data synthesis was structured around the primary outcomes of the included studies. RESULTS: 26 studies met the inclusion criteria. We found substantial heterogeneity in study population, design, intervention, and primary outcomes, and significant methodological issues that resulted in moderate to high risk of bias. Overall, interventions that were available to all (e.g., on YouTube) consistently attained a large global reach, and knowledge was consistently improved. However, the impact on other outcomes of interest (e.g., health literacy, health behaviors) remains unclear. CONCLUSION: Evidence around the impacts of the type of online health education interventions assessed in this review is sparse. A greater understanding of who online interventions work for and what outcomes can be achieved is crucial to determine, and potentially expand, their place in health education.

Self-reported behaviour change among multiple sclerosis community members and interested laypeople following participation in a free online course about multiple sclerosis.

ISSUE ADDRESSED: Evaluated the impact of Understanding Multiple Sclerosis (MS) massive open online course, which was intended to increase understanding and awareness about MS, on self-reported health behaviour change. METHODS: Observational cohort study evaluating pre- (baseline) and post-course (8-10-week follow-up) survey data. The main study outcomes were self-reported health behaviour change, change type and measurable improvement. We also collected participant characteristic data (eg, age, physical activity). We compared participants who reported health behaviour change at follow-up to those who did not and compared those who improved with those who did not using chi square and t tests. Participant characteristics, change types and change improvement were described descriptively. RESULTS: A total of N = 560 course completers were included in this study. The study cohort included MS community members (eg, people with MS, health care providers) and nonmembers. Two hundred and forty-seven (44.1%) reported behaviour change in ≥1 area at follow-up, 160 (64.8%) reported a measurable change and, of these, 109 (68.1%) showed improvement. Participants who reported a change and those who improved had significantly lower precourse health behaviours and characteristics (eg, quality of life, diet quality). The most reported change types were knowledge, exercise/physical activity, diet and care practice. CONCLUSION: Understanding MS encourages health behaviour change among course completers, primarily through the provision of information and goal-setting activities and discussions. SO WHAT?: An online education intervention can effectively encourage health behaviour change over an 8-10-week follow-up period. Information provision, including both scientific evidence and lived experience, and goal-setting activities and discussions are the primary mechanisms underpinning that change.

Association between MS-related knowledge, health literacy, self-efficacy, resilience, and quality of life in a large cohort of MS community members: A cross-sectional study.

BACKGROUND: Despite their potential importance, little is known about the associations between multiple sclerosis (MS) knowledge and other outcomes among MS community members. OBJECTIVE: To examine the relationships between MS-related knowledge, health literacy, self-efficacy, resilience, quality of life (QoL), and MS symptom severity in a cohort of MS community members. METHODS: In this cross-sectional study (N = 1993), we assessed a cohort of Understanding MS online course enrolees using means and standard deviations. We evaluated the impact of participant characteristics on outcomes using chi square, t-tests, and linear regression models, and assessed associations between outcomes using Pearson correlation. RESULTS: We found that the total cohort had moderate to high scores on all outcomes. People living with MS had an above average mean MS knowledge score, but below average QoL, resilience, and health literacy scores. The association of MS status with outcome scores was supported by linear regression models. MS knowledge was not correlated with any other outcome for either people living with MS or without MS. CONCLUSIONS: MS knowledge was not associated with the other study outcomes, suggesting that educational interventions that solely aim to increase knowledge may be ineffective in improving health-related outcomes within the MS community.

Validation of a Dynamic Measure of Current Cognitive Reserve in a Longitudinally Assessed Sample of Healthy Older Adults: The Tasmanian Healthy Brain Project.

Cognitive reserve (CR) is a theoretical construct describing the underlying cognitive capacity of an individual that confers differential levels of resistance to, and recovery from, brain injuries of various types. To date, estimates of an individual's level of CR have been based on single proxy measures that are retrospective and static in nature. To develop a measure of dynamic change in CR across a lifetime, we previously identified a latent factor, derived from an exploratory factor analysis of a large sample of healthy older adults, as current CR (cCR). In the present study, we examined the longitudinal results of a sample of 272 older adults enrolled in the Tasmanian Healthy Brain Project. Using results from 12-month and 24-month reassessments, we examined the longitudinal validity of the cCR factor using confirmatory factor analyses. The results of these analyses indicate that the cCR factor structure is longitudinally stable. These results, in conjunction with recent results from our group demonstrating dynamic increases in cCR over time in older adults undertaking further education, lend weight to this cCR measure being a valid estimate of dynamic change in CR over time.

The BDNF Val66Met polymorphism moderates the effect of cognitive reserve on 36-month cognitive change in healthy older adults.

INTRODUCTION: Cognitive reserve (CR) and BDNF Val66Met are independently associated with the rate of cognitive decline in preclinical Alzheimer's disease. This study was designed to investigate the interactive effects of these variables on 36-month cognitive change in cognitively intact older adults. METHODS: Data for this investigation were obtained from 445 community-residing participants of the Tasmanian Healthy Brain Project, who underwent genetic screening and annual assessment of neuropsychological, health, and psychosocial function. RESULTS: Our main result was that BDNF Val66Met moderated the relationship between baseline CR and change in executive function performance, in that CR-related differences in function decreased across the follow-up period in BDNF Val homozygotes, but became more pronounced in BDNF Met carriers. Similar effects were not observed within the other memory- and language-related cognitive domains. DISCUSSION: Inheritance of BDNF Met may be associated with a detrimental influence on the relationship between CR and cognitive change in cognitively intact older adults, but this effect may be restricted to the executive function domain.

Exploring the validity of mild cognitive impairment (MCI) subtypes: multiple-domain amnestic MCI is the only identifiable subtype at longitudinal follow-up.

BACKGROUND: Epidemiological research exploring risk factors for Alzheimer's dementia resulted in the identification of the mild cognitive impairment (MCI) profile. Subsequently, distinct subtypes of MCI have been proposed; however, the validity of these as diagnostic entities remains uncertain. DESIGN AND PARTICIPANTS: The aim of the present study was to examine the longitudinal neuropsychological profiles of MCI subtypes. A total of 118 adults aged 60-90 years were classified at screening as amnestic (a-MCI), nonamnestic (na-MCI), and multiple-domain amnestic (a-MCI+) and were assessed at two time points across 20 months on a comprehensive neuropsychological assessment battery. RESULTS: The a-MCI+ group displayed the poorest performance of all groups in terms of episodic memory, working memory, attention, and executive functioning. CONCLUSIONS: These findings suggest that the a-MCI+ subtype is the only variant that is recognizable via neuropsychological testing. In contrast, the differentiation between single-domain subtypes and healthy controls is difficult and may not be achievable through current neuropsychological assessment practices.

Lowered performance in working memory and attentional sub-processes are most prominent in multi-domain amnestic mild cognitive impairment subtypes.

BACKGROUND: Research suggests that working memory and attention deficits may be present in mild cognitive impairment (MCI). However, the functional status of these domains within revised MCI subtypes remains unclear, particularly because previous studies have examined these cognitive domains with the same tests that were used to classify MCI subtypes. The aim of this study was to examine working memory and attention function in MCI subtypes on a battery of neuropsychological tests that were distinct from those used to classify MCI subtypes METHODS: A total of 122 adults aged 60-90 years were classified at baseline as amnestic MCI, non-amnestic MCI, and multi-domain amnestic (a-MCI+). The attentional and working memory capacity of participants was examined using a battery of tests distinct from those used to classify MCI at screening. RESULTS: The a-MCI+ group demonstrated the poorest performance on all working memory tasks and specific sub-processes of attention. The non-amnestic MCI group had lowered performance on visual span and complex sustained attention only. There was no evidence of either attentional or working memory impairment in the amnestic MCI participants. CONCLUSION: When MCI cohorts are assessed on measures distinct from those used at classification, a-MCI+ subjects had the most compromised working memory and attention function. These results support previous findings that suggest a-MCI+ more closely resembles early stage Alzheimer's disease and those with a-MCI+ may be at increased rate of future cognitive decline compared to those with other MCI subtypes.

The self-fulfilling prophecy of episodic memory impairment in mild cognitive impairment: do episodic memory deficits identified at classification remain evident when later examined with different memory tests?

Previous studies of mild cognitive impairment (MCI) have been criticised for using the same battery of neuropsychological tests during classification and longitudinal followup. The key concern is that there is a potential circularity when the same tests are used to identify MCI and then subsequently monitor change in function over time. The aim of the present study was to examine the evidence of this potential circularity problem. The present study assessed the memory function of 72 MCI participants and 50 healthy controls using an alternate battery of visual and verbal episodic memory tests 9 months following initial comprehensive screening assessment and MCI classification. Individuals who were classified as multiple-domain amnestic MCI (a-MCI+) at screening show a significantly reduced performance in visual and verbal memory function at followup using a completely different battery of valid and reliable tests. Consistent with their initial classification, those identified as nonamnestic MCI (na-MCI) or control at screening demonstrated the highest performance across the memory tasks. The results of the present study indicate that persistent memory deficits remain evident in amnestic MCI subgroups using alternate memory tests, suggesting that the concerns regarding potential circularity of logic may be overstated in MCI research.

Absence of a relationship between subjective memory complaint and objective memory impairment in mild cognitive impairment (MCI): is it time to abandon subjective memory complaint as an MCI diagnostic criterion?

BACKGROUND: Subjective memory complaints are a requirement in the diagnosis of mild cognitive impairment (MCI) as they are thought to indicate a decline in objective memory performance. However, recent research suggests that the relationship between subjective memory complaint and objective memory impairment is less clear. Thus, it is possible that many people without subjective memory complaints who develop Alzheimer's disease are precluded from a diagnosis of MCI. METHODS: The present study examined the relationship between subjective memory complaint assessed using the Multifactorial Memory Questionnaire (MMQ) and objective memory impairment assessed using standard neuropsychological measures in cases of amnestic MCI (n = 48), non-amnestic MCI (n = 27), and unimpaired healthy participants (n = 64). RESULTS: Correlational and regression analyses indicated that subjective memory complaints displayed a poor relationship with objective memory performance. A subsequent discriminant function analysis indicated that subjective memory complaints failed to improve the diagnostic accuracy of MCI and resulted in increased rates of false negative and false positive diagnoses. CONCLUSION: The results of the present study suggest that a diagnostic criterion of subjective memory complaint reduces the accuracy of MCI diagnosis, resulting in an elevated rate of false positive and false negative diagnoses. The results of this study in conjunction with recent research indicate that a criterion of subjective memory complaint should be discarded from emerging diagnostic criteria for MCI.