Dementia Massive Open Online Course Research Articles

Workforce training through massive open online courses: can education generate collective hope for better dementia care?

AbstractThe personal care workforce is generally poorly paid, often unregulated, minimally trained and unprepared for the challenges of working with people with dementia. When it comes to accredited healthcare degrees, established programs have little space to accommodate emerging health priorities, such as dementia, in an already crowded curriculum. This creates the perfect storm of a significantly unprepared healthcare workforce as we look towards an expected 139 million cases of dementia worldwide by 2050 (www.alzint.org).Could freely available, online, evidence‐based dementia care education be a solution, offering hope, knowledge and skills to carers across the globe? In 2013, the University of Tasmania launched an Understanding Dementia Massive Open Online Course (MOOC). Over 7 weeks participants increase their knowledge of dementia: its causes, symptoms and ways of responding to the needs of people living with the condition. This award‐winning MOOC has world‐leading completion rates, been rated amongst the top MOOCs of all time (Class Central), and reached over 330,000 people around the globe. As well as offering free MOOCS, there are low or no‐cost university level education options in a Diploma and Bachelor of Dementia Care. Targeted to the Australian Aged Care workforce, but open to any student, these fully online programs attract personal care workers, health professionals and family members of people living with dementia. Thousands of students have enrolled, primarily for professional and practice development reasons and to provide better care for family members or friends with dementia. These programs were created specifically for learners of all ages and from culturally and linguistically diverse backgrounds, and designed to facilitate success and progress. They are scalable and are being translated into a number of languages and cultures. With this approach, one click at a time, we offer hope through accessible education for those that need it most. In this sense, education is considered an intervention ‐ improving dementia care and awareness, decreasing stigma, and in driving a public health approach for dementia prevention.

An online, public health framework supporting behaviour change to reduce dementia risk: interim results from the ISLAND study linking ageing and neurodegenerative disease

BackgroundUnmanaged cardiometabolic health, low physical and cognitive activity, poor diet, obesity, smoking and excessive alcohol consumption are modifiable health risk factors for dementia and public health approaches to dementia prevention have been called for. The Island Study Linking Ageing and Neurodegenerative Disease (ISLAND) is a dementia prevention public health study examining whether improving knowledge about modifiable dementia risk factors supports behaviour changes that reduce future dementia risk.MethodsResidents of Tasmania, Australia, aged 50 + years who joined the 10-year ISLAND study were asked to complete annual online surveys about their knowledge, motivations and behaviours related to modifiable dementia risk. ISLAND included two knowledge-based interventions: a personalised Dementia Risk Profile (DRP) report based on survey responses, and the option to do a 4-week Preventing Dementia Massive Open Online Course (PDMOOC). Longitudinal regression models assessed changes in the number and type of risk factors, with effects moderated by exposures to the DRP report and engagement with the PDMOOC. Knowledge and motivational factors related to dementia risk were examined as mediators of risk behaviour change.ResultsData collected between October 2019 and October 2022 (n = 3038, av. 63.7 years, 71.6% female) showed the mean number of modifiable dementia risk factors per participant (range 0 to 9) reduced from 2.17 (SD 1.24) to 1.66 (SD 1.11). This change was associated with the number of exposures to the DRP report (p = .042) and was stronger for PDMOOC participants (p = .001). The interaction between DRP and PDMOOC exposures yielded a significant improvement in risk scores (p = .004). The effect of PDMOOC engagement on behaviour change was partly mediated by increased knowledge (12%, p = .013). Self-efficacy enhanced the effect of knowledge on behaviour change, while perceived susceptibility to dementia mitigated this relationship.ConclusionsThe ISLAND framework and interventions, a personalised DRP report and the four-week PDMOOC, work independently and synergistically to increase dementia risk knowledge and stimulate health behaviour change for dementia risk reduction. ISLAND offers a feasible and scalable public health approach for redressing the rising prevalence of dementia.

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.

Exploring perceptions of eating with dementia: Findings from a massive open online course

People with dementia are at high risk of malnutrition as a result of progressive symptoms that affect eating. Maximising opportunities to enhance nutrition and strategies to encourage eating are a crucial part of providing care. Caregiver knowledge and a person-centred approach to eating is essential to reduce symptom burden and maintain quality of life. There is currently limited research investigating first person perceptions of eating with dementia, particularly beyond small sample sizes. Therefore, this paper aims to explore community perceptions of how best to encourage eating for people with dementia using findings from an online course. Within the Understanding Dementia Massive Open Online Course, responses to the following statement were collected: ‘If I had dementia, the things that might help me to eat include…’. A total of 3,651 participant responses were collected from the 2018 and 2019 course enrolments and analysed using structural topic modelling and secondary thematic analysis. The majority of participants were female, tertiary educated Australians over 50 years old. A third were paid caregivers. Thirteen topics were isolated from topic modelling that can be reduced into six broad categories: food type personalisation, meal choice, meal presentation, eating environment, eating assistance and end of life nutrition. Participant responses demonstrated diverse awareness of important aspects to encourage eating in dementia. Findings support the need for improved uptake of nutritional strategies in practice and education on eating with dementia to support caregivers.

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.

Interpersonal communication may improve equity in dementia risk education.

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. 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." 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. 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.

Family carers of people living with dementia and discussion board engagement in the Understanding Dementia Massive Open Online Course

Objectives This study compared discussion board involvement between family carers and non-carers in the Understanding Dementia Massive Open Online Course (UD-MOOC). Methods A mixed methods observational cohort study of family carers and non-carers was undertaken over the February-April 2020 UD-MOOC. Discussion board engagement was measured as number of posts and replies and examined longitudinally using mixed models. Discussion topics were explored through structural topic models (STM). Subsequently, thematic analysis of STM derived-topic exemplars was conducted to contextualise these discussions. Results Family carers were (n = 2320) found to post (p < 0.001) and reply (p = 0.029) significantly more often than non-carers (n = 2392). Of the 32-STM derived-topics, meaningful activities (mean Δ = 0.007, 95% CrI [0.005–0.100]), personal stories of diagnosis (mean Δ = 0.007, 95% CrI [0.005–0.009]), and family history of dementia (mean Δ = 0.006, 95% CrI [0.004–0.008]) were discussed significantly more frequently by family carers compared to non-carers. Conclusion These results may reflect underlying motivational differences and circumstantial relevance. Perhaps the greater engagement by family carers is related to a sense of having inadequate relevant offline social resources, where engagement in the UD-MOOC discussion boards may serve as means to share experiences with others.

‘If I had dementia, the things that might help me to eat include...’: Exploring findings from a massive open online course.

AbstractBackgroundMaximising opportunities to enhance nutrition are a crucial part of providing care to people with dementia, since their risk of malnutrition is increased due to progressive symptoms. A person‐centred approach to eating coupled with skilled caregivers is essential to minimise symptom burden, reduce dependence and maintain quality of life. The aim of this study was to explore perceptions of encouraging eating for those with dementia from responses to a discussion board within a free and openly accessible course: the Understanding Dementia Massive Open Online Course (UD‐MOOC), which asks ‘If I had dementia, the things that might help me to eat include...’.MethodA total of 3,651 participant discussion responses were collected from 2018 and 2019 course enrolments. Responses were analysed using structural topic modelling followed by secondary thematic analysis to develop meaningful themes to depict participant perceptions.ResultThe majority of participants were female, tertiary educated Australians over 50 years old. One third were paid caregivers. Thirteen topics were isolated from structural topic modelling, from which six major themes were identified: personalised food modifications (such as changes to texture, meal size and frequency of food offered), meal choice (including eating implements and providing food options), meal presentation (including sensory stimulation), eating environment (such as dining and social surroundings), eating assistance (with a focus on independence and encouragement) and end of life nutrition (such as eating safety and perceptions of tube feeding). Meal timing preference was seldom raised.ConclusionBy exploring perceptions from a discussion board provoking a first‐person stance, participants demonstrated diverse awareness of important aspects to encourage eating in dementia. Furthermore, the opportunity to explore perceived experience provided an understanding of what eating means to caregivers and how they may approach person‐centred eating for people with dementia. In the context of previous research, the findings of this study suggest a gap between perceived best care strategies and practical application of these strategies. This supports the need to nurture opportunities that allow awareness to be implemented in practice and education programs that support current and future dementia caregivers.

Reaching the unengaged: Conversations about dementia risk reduction

AbstractBackgroundThe Preventing Dementia Massive Open Online Course (PD‐MOOC) aims to increase public knowledge of dementia risk factors and promote risk‐reducing behaviour. This course attracted 147,000 enrolments from 2016 to 2020. Men and people with low levels of education are under‐represented in the PD‐MOOC. This study investigated whether members of these under‐engaged groups receive dementia risk information “second‐hand” from close contacts who undertake the PD‐MOOC.MethodIn May 2020, first time PD‐MOOC enrolees from Tasmania, Australia, provided qualitative and quantitative data about the people they felt very close or somewhat close to. Participants were retrospectively asked about conversations in which information from the PD‐MOOC was discussed. Two‐proportions z‐tests were used to determine the extent to which “second‐hand” information reached under‐engaged groups.ResultParticipants (n = 37) provided information about 799 close contacts; networks ranged in size from 8 to 45 people. Participants reported sharing dementia risk information with between 0 and 100% of their close contacts. Overall, information was shared with 437 close contacts. The proportion of men with whom dementia risk information was shared was significantly higher than the proportion of men directly receiving such information via the May 2020 PD‐MOOC (24% vs 15%, p&lt;0.001). The proportion of people with a low level of education (less than high school completion) with whom dementia risk information was shared was significantly higher than the proportion of people with a low level of education directly receiving such information via the May 2020 PD‐MOOC (12% vs 1%, p&lt;0.001). Some participants reported that some of the close contacts with whom they discussed dementia risk were unlikely to engage in dementia risk education themselves: “[my friend] said ‘…well you can tell me about it … after you've done it’ ‐ they weren't prepared to do the course”.ConclusionInterpersonal conversations increase the reach of dementia risk information, reaching people and demographic groups that are less likely to engage with interventions like the PD‐MOOC. Interpersonal conversations about dementia risk reduction could potentially be promoted to help reach important target populations for dementia prevention.

Is the Understanding Dementia Massive Open Online Course Accessible and Effective for Everyone? Native Versus Non-Native English Speakers

Most massive open online courses (MOOCs) are offered in English, including those offered by non-English speaking universities. The study investigated an identified English language dementia MOOC’s accessibility and effectiveness in improving the dementia knowledge of non-native English speaker participants. A total of 6,389 enrolees (age range 18–82 years; 88.4% female) from 67 countries was included in analyses. Dementia knowledge was measured by the Dementia Knowledge Assessment Scale (DKAS) before and after the MOOC completion. Rates of completion were also compared. Native English speakers (n = 5,320) were older, more likely to be female, less likely to be employed, and had lower educational attainment than non-native English speakers (n = 1025). Native English speakers were also more likely to care for or have cared for a family member or friend living with dementia than were non-native English speakers. Native English speakers had a significantly higher DKAS score both pre- (M = 33.0, SD = 9.3) and post-MOOC (M = 44.2, SD = 5.5) than did non-native English speakers (M = 31.7, SD = 9.1; and M = 40.7, SD = 7.7 for pre- and post-MOOC, respectively). Non-native English speakers with low pre-MOOC dementia knowledge scores gained significantly less dementia knowledge following course completion than did native English speakers (p &lt;.001, adjusted for age and education). There was no significant difference between the two groups in their likelihood of completing the MOOC. Our findings suggest that non-native English speakers are motivated and able to complete the MOOC at similar rates to native English speakers, but the MOOC is a more effective educational intervention for native English speakers with low dementia knowledge.

Implementing dementia risk reduction in primary care: views of enrollees in the Preventing Dementia Massive Open Online Course.

There is a push for greater promotion of dementia risk reduction (DRR) by primary care practitioners (PCPs). The aims of this study were to understand the views of non-medically trained Australian contributors in a Massive Open Online Course (MOOC) about dementia prevention regarding the role of PCPs in promoting DRR and to consider the implications of those views for developing implementation strategies. Discussion board posts of MOOC enrollees were analysed regarding the actions that organisations, communities and/or governments should take to help people work towards DRR. Of the 1641 eligible contributors to the discussion, 160 (10%) indicated that PCPs had a role in promoting DRR. This subset of participants particularly wanted earlier identification of risk by PCPs and a discussion about DRR. Some participants thought PCPs did not currently prioritise DRR, lacked knowledge about DRR and faced Medicare and resource restrictions to promoting DRR. We suggest that PCPs need: better publicity for their role in promoting DRR; to prioritise DRR; knowledge about DRR; and to take advantage of existing opportunities to promote DRR quickly. The findings of this study should be considered when attempting to implement DRR guidelines in primary care.

Change in modifiable dementia risk factors during COVID-19 lockdown: The experience of over 50s in Tasmania, Australia.

IntroductionContainment measures implemented to minimize the spread of coronavirus disease 2019 (COVID‐19) are reported to be negatively affecting mental health, diet, and alcohol consumption. These factors, as well as poor cardiometabolic health and insufficient physical and cognitive activity, are known to increase the risk of developing dementia. COVID‐19 “lockdown” measures may have exacerbated these dementia risk factors among people in mid‐to‐later life.MethodsWe compared longitudinal data from before (October 2019) and during (April‐June 2020) the first COVID‐19 lockdown period in Tasmania, Australia. Participants (n = 1671) were 50+ years of age and engaged in a public health program targeting dementia risk reduction, with one‐third participating in the Preventing Dementia Massive Open Online Course (PD‐MOOC). Regression models were used to assess changes in smoking, alcohol use, body mass index (BMI), diet, physical exercise, cognitive and social activity, anxiety and depression, and management of cholesterol, diabetes, and blood pressure. Where significant changes were noted, the moderating influence of being in current employment, living with others, and completing the PD‐MOOC was tested.ResultsAlthough friend networks contracted marginally during lockdown, no detrimental effects on modifiable dementia risk factors were noted. Anxiety levels and alcohol consumption decreased, there was no change in depression scores, and small but significant improvements were observed in cognitive and physical activity, smoking, diet, and BMI. Stronger improvements in cognitive activity were observed among people who were cohabiting (not living alone) and both cognitive activity and adherence to the MIND diet (Mediterranean‐DASH diet Intervention for Neurological Delay) improved more for people who participated in the PD‐MOOC.DiscussionLongitudinal data did not show widespread negative effects of COVID‐19 lockdown on modifiable dementia risk factors in this sample. The results counter the dominant narratives of universal pandemic‐related distress and suggest that engaging at‐risk populations in proactive health promotion and education campaigns during lockdown events could be a protective public health strategy.

The Preventing Dementia MOOC: Contribution to First Nations’ Health and Well-Being

Dementia is a global public health issue. First Nations people are at increased risk due to complex intergenerational factors grounded in inequalities in health services and economic and educational opportunities. While there is yet no drug-related cure for this progressive and terminal neurological condition, evidence confirms that increased understanding of dementia and modification of lifestyle factors can reduce risk. The primary potentially modifiable risk factors are not completing secondary school, midlife hypertension, obesity, type II diabetes, depression, physical inactivity, smoking, hearing loss acquired after the age of 55 years, and social isolation. Inherent in these factors is stress, affecting mental health. Addressing these factors globally could prevent or delay over 40 million cases of dementia. The free Preventing Dementia Massive Open Online Course (PD MOOC) is a globally recognized 4-week course that aims to build self-efficacy in knowledge and management of modifiable risk factors. The course has reached over 68,000 people world-wide and is rated highly; however, its contribution to First Nations communities has not yet been investigated. We describe the content of the PD MOOC, report on its impact in a cohort of older Aboriginal people (≥ 50 years of age) in Circular Head, Tasmania, Australia six months after course completion, and emphasize the importance of including traditional approaches to healing. We describe a protocol in which cultural determinants of health can be infused into the PD MOOC and evaluated to promote health and well-being globally for older First Nations people.

Room for improvement: An online survey of allied health professionals' dementia knowledge.

To evaluate the dementia knowledge of allied health professionals and identify their specific learning needs. An online survey was conducted with allied health professionals enrolled in the Understanding Dementia Massive Open Online Course, a free course open to anyone, worldwide. The primary outcome measure was the Dementia Knowledge Assessment Scale, assessed prior to course commencement. The survey was completed by 1591 participants. The mean dementia knowledge score was 35.0 (SD 8.4), with 13% (n=207) achieving a target score of 45/50 or above, indicating comprehensive dementia knowledge. Key knowledge gaps were in the areas of dementia onset and non-pharmacological management of behavioural and psychological symptoms of dementia. Allied health professionals surveyed had significant gaps in dementia knowledge. Educators planning dementia curriculum for allied health professionals could consider addressing areas of knowledge related to the identified items, with view to providing a foundation for excellence in dementia care.

The Preventing Dementia Massive Open Online Course results in behaviour change associated with reduced dementia risk: The My INdex of DEmentia Risk (MINDER) study

AbstractBackgroundSeveral multi‐domain dementia prevention interventions are being trialled, often involving intensive programs targeting older adults. To reach the wider population at risk of dementia, accessible and scalable interventions are also needed. The Preventing Dementia Massive Open Online Course (PD‐MOOC) aims to build knowledge of dementia risk factors, self‐efficacy in management of modifiable risk factors, and an ability to appraise evidence. Since 2016, the PD‐MOOC has attracted over 99,000 enrolments.MethodThe My INdex of DEmentia Risk (MINDER) study aimed to investigate the impact of the PD‐MOOC on risk‐related behaviour and dementia worry, and associations between the two. PD‐MOOC participants completed the short form Australian National University Alzheimer’s Disease Risk Index (ANU‐ADRI) and the Dementia Worry Scale at 3 time points: pre‐MOOC (n = 4838), immediately post‐MOOC (n = 2546), and 6 months follow‐up (n = 906). Multinomial logistic regression models were used to estimate the probability of transition from one risk behaviour state (high/intermediate/low risk) to another, based on ANU‐ADRI sub‐scales for the seven modifiable factors assessed.ResultAt 6 months follow‐up, the probability that participants in the high‐risk state for depressive symptoms at baseline had moved to the low‐risk state was 0.58 (CI: 0.49 – 0.66). Dementia worry was significantly associated with risk state transitions only for depressive symptoms; those more worried were more likely to move from the high‐ to low‐risk state. The probability that heavy alcohol drinkers at baseline transitioned to moderate drinking at follow‐up was 0.49 (CI: 0.33 – 0.64), and the probability that current smokers transitioned to former smokers was 0.15 (CI: 0.05 – 0.23). The probability of moving from the highest risk state at baseline to a lower risk state at follow‐up was 0.36 (CI: 0.11 – 0.70) for social activity, 0.35 (CI: 0.25 – 0.44) for fish consumption, and 0.20 (CI: 0.15 – 0.13) for physical activity, and just 0.02 for cognitive activity.ConclusionThese findings suggest the PD‐MOOC provides benefits beyond imparting knowledge and may contribute to self‐efficacy for sustained behaviour change. The PD‐MOOC may be considered an accessible, scalable and effective multi‐domain public health intervention for dementia risk reduction.

The diffusion of dementia risk education

AbstractBackgroundThe Preventing Dementia Massive Open Online Course (PD‐MOOC) is one of several initiatives aiming to increase dementia risk knowledge and promote risk‐reducing behaviour. These initiatives primarily reach advantaged individuals, increasing health inequities. Previously, thematic analysis of PD‐MOOC participant feedback identified frequent reports of sharing dementia risk information with others. Interpersonal communication often introduces information to people from a broader demographic and may increase the impact of dementia risk education. This study investigated the diffusion of dementia risk reduction knowledge and behaviour beyond PD‐MOOC participants.MethodThe PD‐MOOC attracted over 99,000 enrolments from 2016 to 2019. Responses to surveys completed by participants before (demographics) and after (course feedback) the PD‐MOOC were analysed. Qualitative statements were characterised using key word filtering and subsequent thematic analysis. Chi‐squared tests of homogeneity with Bonferroni adjustments for multiple comparisons were used to determine significant information sharing patterns.ResultOlder people, females, health sector workers and people with a post‐secondary education were over‐represented among PD‐MOOC participants. Participants expressed an eagerness to share the MOOC with others, with 98.8% of respondents agreeing they “would recommend the MOOC to others”. 25% of responding participants discussed sharing PD‐MOOC information in their response to the question “If you have already applied your MOOC learning, please tell us how”. Among those who reported sharing information with specific people, family members were mentioned most frequently, followed by friends and colleagues. Significantly more responses discussed sharing information with males than females (p &lt; 0.001) and with people outside the health sector than within (p &lt; 0.001). Some participants reported sharing information about specific risk domains; physical activity was mentioned most frequently, followed by cognitive stimulation and diet. Additionally, some reported that the person with whom they shared information altered their behaviour; increased physical activity was most commonly reported, followed by a general improved lifestyle and a change in diet.ConclusionInformation sharing transmits dementia risk information to, and promotes behaviour change among, people who are demographically less represented in the PD‐MOOC, extending the reach and impact of this educational intervention. The PD‐MOOC enables dementia risk reduction beyond those educated.

Measuring consumer access, appraisal and application of services and information for dementia (CAAASI-Dem): a key component of dementia literacy

BackgroundThe ability to locate, navigate and use dementia services and information, either for oneself or in providing care for others, is an essential component of dementia literacy. Despite dementia literacy being understood to be inadequate in many settings, no validated instrument exists to measure these elements. Here we describe the development and preliminary validation of the Consumer Access, Appraisal and Application of Services and Information for Dementia (CAAASI-Dem) tool.MethodsItems were adapted from existing health literacy tools and guided by discussion posts in the Understanding Dementia Massive Open Online Course (UDMOOC). Following expert review and respondent debriefing, a modified CAAASI-Dem was administered to UDMOOC participants online. On the basis of descriptive statistics, inter-item and item total correlations and qualitative feedback, this was further refined and administered online to a second cohort of UDMOOC participants. Exploratory factor analysis identified underlying factor structure. Items were retained if they had significant factor loadings on one factor only. Each factor required at least three items with significant factor loadings. Internal consistency of factors in the final model was evaluated using Cronbach’s alpha coefficients.ResultsFrom a pool of 70 initial items with either a 5-point Likert scale (Not at all confident – Extremely confident; or Strongly agree – Strongly disagree) or a binary scale (Yes – No), 65 items were retained in CAAASI-Dem-V1. Statistical and qualitative analysis of 1412 responses led to a further 34 items being removed and 11 revised to improve clarity. The 31 item CAAASI-Dem-V2 tool was subsequently administered to 3146 participants, one item was removed due to redundancy and EFA resulted in the removal of an additional 4 items and determination of a five factor structure: Evaluation and engagement; Readiness; Social supports; Specific dementia services; and Practical aspects.ConclusionsThe five factors and 26 constituent items in CAAASI-Dem align with functional, critical, and communicative aspects of dementia health literacy from the perspective of the carer. As a screening tool for people living with dementia and their carers, CAAASI-Dem potentially provides a means to determine support needs and may be a key component of the dementia literacy assessment toolbox.

Building dementia knowledge globally through the Understanding Dementia Massive Open Online Course (MOOC)

The prevalence of dementia is escalating world-wide and knowledge deficits remain a barrier to community inclusiveness and quality care. The need for quality, comprehensive education has been identified as a key priority for global action plans on dementia. The Understanding Dementia Massive Open Online Course (UDMOOC) offers the potential to improve dementia knowledge globally. Completion rates for the UDMOOC (2016–2017) were on average 42% of enrolments, and 69% of participants care or have cared for people with dementia. The current study shows baseline dementia knowledge was positively related to previous learning about dementia from various types of exposure to the condition including having family members and/or working with people with the condition, and having undertaken dementia education. However, knowledge of all participant groups showed substantial improvements after completion of the UDMOOC. This was shown regardless of educational background and previous experience of dementia, and group differences after completing the UDMOOC were minimised. The UDMOOC is therefore an effective knowledge translation strategy to improve dementia knowledge for a diverse, international learner group.

TRANSFORMING KNOWLEDGE OF DEMENTIA THROUGH THE UNDERSTANDING OF DEMENTIA MASSIVE OPEN ONLINE COURSE (UDMOOC)

Background: Affordable and accessible evidence-based educational resources are needed to address persisting deficiencies in dementia literacy. The Wicking Dementia Research and Education Centre Understanding Dementia Massive Open Online Course (UD MOOC) was designed to meet the broad dementia educational needs of both health workers and family carers and is delivered as a free, 9 week on-line course focussed on the brain, pathophysiology, symptoms and care. This study examined the impact of the UDMOOC on dementia knowledge, a key component of dementia literacy. Methods: Dementia knowledge of participants was determined before and after completing the UD MOOC using the Dementia Knowledge Assessment Scale (DKAS 2.0). This validated, reliable scale comprises 25 items considered important in understanding dementia and associated care needs. In addition to standard demographic parameters, data was collated on participant experience of dementia, including prior exposure to dementia education, and experience obtained in the workplace and/or as a family carer. Results: 1718 UDMOOC participants completed the DKAS 2.0 comprising a regional distribution of 81% Oceania, 8.2 % Americas, 7.2 % Europe, 2.3% Asia and less than 1% Africa. A significant improvement in dementia knowledge was evident following completion of the UDMOOC. Mean dementia knowledge score prior to undertaking the UDMOOC was 34.7 (+/- 9.12) out of a possible 50 and after undertaking the UDMOOC was 43.7 (+/-6.01). 22% achieved the target score of 46 prior to the UDMOOC while 78% achieved this target score after completing the UDMOOC. The improvements in dementia knowledge were evident in both health care worker and family carer groups irrespective of experience or educational background, suggesting the UDMOOC is an effective means of delivering dementia education to a wide cross section of participants. Conclusions: The UDMOOC is an effective means of improving dementia knowledge and will contribute to improving the dementia literacy of health care providers, people living with dementia, their families and the broader community globally. Given its relevance and accessibility, the UDMOOC is a valuable and widely applicable public health intervention.

IMPROVING KNOWLEDGE AND PRACTICE THROUGH MASSIVE OPEN ONLINE DEMENTIA EDUCATION: THE UNDERSTANDING DEMENTIA AND PREVENTING DEMENTIA MOOCS

There is a documented need and growing demand for evidence-based consumer-friendly education to enable more effective dementia care and wider adoption of strategies to prevent dementia. The Wicking Dementia Research and Education Centre developed the Understanding Dementia Massive Open Online Course (UD-MOOC) to increase knowledge of dementia and person-centered care practices, particularly for those providing care. The Centre's Preventing Dementia MOOC (PD-MOOC) was developed to educate people on the scientific basis of dementia risk reduction, both those interested in reducing their own risk, and those providing related services. The 9-week UD-MOOC examined how the brain is affected by diseases that cause dementia, symptoms, diagnosis, stages, management, and perspectives of those affected and caregivers. The 5-week PD-MOOC explored non-modifiable and modifiable risk factors, myths about dementia risk and causes, and barriers and enablers of health-behaviour change. MOOC completion was defined as a passing grade of 70% on 3 quizzes. To assess MOOC impact, completing participants were asked how they had applied knowledge gained and a natural-language processing algorithm was used to identify common themes. Six iterations of the UD-MOOC from 2013 to 2017 attracted a total of 119,611 enrolments, with 47,793 (40%) completing the course. Two offerings of the PD-MOOC in 2016 and 2017 attracted 27,048 enrolments and 13,778 (51%) completed. 76% of 2017 UD-MOOC and 75% of 2017 PD-MOOC feedback survey respondents agreed they had already applied the knowledge gained from the MOOC. Thematic analyses revealed UD-MOOC completers were applying a more person-centered approach to care, changing work practices, and sharing knowledge with others, and had improved understanding of dementia, and more empathy for and confidence in supporting people experiencing dementia. PD-MOOC completers specified they were increasing physical, social and cognitive activity, improving their diet, losing weight, having check-ups for vascular risk factors, more motivated to reduce their risk, and sharing knowledge with others. The large enrolments and high completion rates for Wicking's dementia MOOCs highlight the scale of demand for accessible quality dementia education. Participant feedback demonstrates that the MOOCs are improving both knowledge and practice, with potential large-scale impacts for dementia care and prevention.