EVALUATING DEMENTIA RISK REDUCTION TOOLS FOR THE AUSTRALIAN COMMUNITY Dr Maree Farrow Alzheimer s Australia Vic Centre for Research on Ageing, Health and Wellbeing, Australian National University Dementia Collaborative Research Centre Early Diagnosis and Prevention
Introduction Modifiable lifestyle and health risk factors contribute to the incidence of dementia Millions fewer cases would result from reducing the population incidence of dementia risk factors However, knowledge in the general population is low, especially about the link between cardiovascular risk factors and brain health In Australia, only half of adults believed dementia risk reduction is possible (Farrow, 2008) Alzheimer Australia s dementia risk reduction community education campaign Your Brain Matters and BrainyApp
Estimated no. of Australians with dementia Dementia Prevalence In 2015, an estimated 343,000 Australians have dementia, with 1,800 new cases each week In 2050, almost 900,000 Australians will have dementia, with 7,400 new cases each week 1,000,000 800,000 891,400 737,600 600,000 550,200 400,000 200,000 342,800 399,800 0 2015 2020 2030 2040 2050
Dementia Prevention The future numbers of people developing dementia can be reduced by reducing risk factors in the community 5% type 2 diabetes 6% fruit & vegetable consumption 7% apoe4 gene 10% depression 18% intelligence / education Modifiable factors have as much or more impact as the major risk gene for AD Ritchie et al, 2010
Dementia Prevention Preventative health approaches to reduce risk factors could reduce future prevalence Nepal et al, 2010
Alzheimer s Australia & Dementia Risk Reduction One of four priorities of Alzheimer s Australia s strategic plan 2012-2014: Identifying effective strategies for preventing and delaying the onset of dementia Increasing the focus on brain health to reduce the risk of the onset of dementia.
History Mind Your Mind launched in 2005 (updated 2009) 7 signposts to dementia risk reduction Mind your brain Mind your body Mind your diet Mind your habits Mind your head Mind your health checks Mind your social life
History BrainyApp launched in 2011 Interactive dementia risk reduction app for smartphones and tablets (Apple, Android, English, Spanish) Includes brain health survey, recommended areas for improvement, activities to gain points, brain health facts Winner 2012 Victorian Public Healthcare Award
History Your Brain Matters launched in 2012 5 simple steps to brain health Look after your heart Be physically active Mentally challenge your brain Follow a healthy diet Enjoy social activity yourbrainmatters.org.au
Your Brain Matters YBM focuses on 10 risk/protective factors amenable to lifestyle modification: alcohol, blood pressure, body weight, cholesterol, diabetes, diet, mental activity, physical activity, smoking, social activity Other risk factors for dementia include: age, gender, depression, head injury, pesticide exposure
Your Brain Matters Targeting brain, body and heart for cognitive health and dementia prevention (Farrow & O Connor, 2012) The evidence behind YBM Risk and protective factors what we know Preventative health strategies for people with dementia
Mind Your Mind Community Presentations Evaluation
Participants Attendees at MYM presentations given survey 82 respondents 84% over 60, 75% female 68% live in urban areas, 35% born overseas 60% post-school education, 17% working 12% with chronic medical condition
Reason for Interest Reason % respondents I have dementia 1 I care for someone who has dementia 23 I have a family history of dementia 20 I feel I am getting to the age when dementia could affect me I am worried about my memory or thinking 30 I am worried about someone close to me 18 The presentation was recommended to me by someone else The information is relevant for my work 5 55 16
Hoped to Learn Topic % respondents How to slow the progress of dementia 57 Whether dementia can be prevented 51 Whether I am at risk of getting dementia 47 Whether someone close to me is at risk of getting dementia How to improve my memory or thinking 65 What to do to reduce the risk of getting dementia 86 29
Ratings Question Current behaviour Intention to change behaviour Mean rating 4.1 (pretty well) 4.4 (somewhat strong) Was information easy to understand? 3.5 (just right somewhat simplistic) How well did information equip you? 4.4 (quite well) Are practical tips useful? 4.4 (somewhat useful)
Knowledge of Links with Dementia Risk
Importance of Monitoring Behaviour
Intention to Change Behaviour
Conclusions Many already concerned about cognitive decline Wanting to know immediate risk and what to do to stop dementia in the short-term Want easy access to free resources Want personalised risk assessment and individually tailored risk reduction programs
Mind Your Mind Website Evaluation
Participants Online survey, invitation on MYM website 123 respondents 45% over 60, 82% female 72% live in urban areas, 27% born overseas 63% post-school education, 32% retired 8% with chronic medical condition
Reason for Interest Reason % respondents I care for someone who has dementia 13 I have a family history of dementia 27 I feel I am getting to the age when dementia could affect me I am worried about my memory or thinking 31 I am worried about someone close to me 19 The website was recommended to me by someone else The information is relevant for my work 10 30 28
Hoped to Learn Topic % respondents How to slow the progress of dementia 53 Whether dementia can be prevented 40 Whether I am at risk of getting dementia 44 Whether someone close to me is at risk of getting dementia How to improve my memory or thinking 62 What to do to reduce the risk of getting dementia 78 18
Ratings Question Current behaviour Intention to change behaviour Was information easy to understand? How well did information equip you? Are practical tips useful? Mean rating 4.1 (pretty well) 4.2 (somewhat strong) 3.4 (just right) 4.1 (quite well) 4.1 (somewhat useful)
Knowledge of Links with Dementia Risk
Importance of Monitoring Behaviour
Intention to Change Behaviour
Conclusions Many already concerned about cognitive decline Want specific information and resources Recipes and diet plans Tips to make it easier to be active (physical, social) What types of activities are best (mental, physical) Want online personalised risk assessment Farrow M. JMIR Res Protoc. 2013;2(1):e15
ehealth Interventions Evaluation
Aims To evaluate the impact of three ehealth tools on: dementia risk reduction knowledge actual behaviour in relation to dementia risk factors attitudes to changing behaviour To evaluate user satisfaction with the ehealth tools To determine whether interactive ehealth tools have a greater impact than a static information-only website
ehealth Interventions Brain Heart Health Program (BHHP; control) Information-based dementia risk reduction website Users can read information about why each risk factor is important and access links to resources Brain Heart Health Plus Program (PLUS) Interactive dementia risk reduction website Users complete a brain health survey, receive recommended areas for improvement, choose risk factors to work on Users receive personalised emails with links to information, resources, and downloads for each risk factor chosen
ehealth Interventions BrainyApp (BA) Interactive dementia risk reduction app for smartphones and tablets Users complete a brain health survey, receive recommended areas for improvement Users can engage in recommended activities to gain points, read facts about brain health, share facts and their score
Procedure Pre- week week PROCEDURE intervention 1 2 week 3 week 4 week 5 week 15 week 16 Screening questionnaire Baseline questionnaire Intervention instructions PLUS part two Others reminder Post-intervention questionnaire BHHP n=66 PLUS n=88 BA n=46 3-month follow-up questionnaire
BA (n=46) BHHP (n=66) PLUS (n=88) Age (yeas), M (SD) 52.26 (15.81) 53.18 (13.75) 51.35 (15.48) Gender (% female) 65.2 85.9 72.7 Country of birth (% Australia) 78.3 68.2 76.1 Living with partner and/or children (%) Education (%) 71.1 77.3 83.0 Secondary or less 28.3 10.6 17.0 Trade or Diploma 19.5 27.3 20.4 Bachelor degree or higher 52.2 62.1 62.5 Employment (%) Full-time 28.3 28.8 35.2 Part-time 19.6 25.8 20.5 Retired 19.6 25.8 25.0 Occupation (%) Managers 8.7 16.7 8.1 Professionals 28.3 27.3 32.6 Other occupation 13.0 15.1 12.9 Self-employed 6.5 4.5 5.8
Mean score Risk Reduction Knowledge Significant increase in correct identification of dementia risk factors following intervention (p<.001) 4.00 3.50 3.00 2.50 2.00 1.50 Baseline Follow-up 1.00 0.50 0.00 BA BHHP PLUS Risk factors identified
Mean score Risk Reduction Impact Significant increase in impact of dementia risk reduction knowledge following intervention (p<.001) 26.00 25.00 24.00 23.00 Baseline Follow-up 22.00 21.00 20.00 BA BHHP PLUS Risk reduction impact
Mean score Risk Reduction Behaviour Significant increases in mental, social and physical activity following intervention 17.00 p<.05 16.00 15.00 14.00 p<.05 13.00 p<.001 12.00 Baseline Follow-up 11.00 10.00 9.00 8.00 MENTAL ACTIVITY SOCIAL ACTIVITY PHYSICAL ACTIVITY Behaviour Change
Mean score Risk Reduction Behaviour Significant improvements in overall diet score and salt, sugar and fat consumption following intervention 14.00 p<.001 p<.01 13.00 p<.001 p<.001 12.00 Baseline 11.00 Follow-up 10.00 9.00 DIET SALT SUGAR FAT Behaviour Change
Mean score Impression of ehealth Tool Compared to BHHP, significantly lower ratings for BA for overall impression, amount learned, how interesting and how helpful the information was; for BA and PLUS for navigation (p<.05) 5.00 4.00 3.00 BA BHHP PLUS 2.00 1.00 IMPRESSION NAVIGATION AMOUNT LEARNED Impression ratings INTERESTING HELPFUL EASY TO UNDERSTAND
Conclusions Brief dementia risk reduction ehealth interventions can achieve improved knowledge and increased motivation small improvements in self-rating of health behaviours Baseline behaviour and motivation rated high suggests those with healthier lifestyles more likely to be attracted to dementia risk reduction resources Control group showed similar improvements to interactive ehealth tool users, and gave more positive evaluation suggests cohort benefits from information interactive elements may need to be more individually targeted and provide structured guidance O Connor E, et al. JMIR Mental Health. 2014;1(1):e4
ANU Alzheimer s Disease Risk Index Evaluation
ANU-ADRI The Australian National University Alzheimer s Disease Risk Index (ANU-ADRI) Questionnaire-based validated assessment tool designed to quantify an individual s risk of developing AD Based on 15 risk and protective factors for AD that have reliable scientific evidence and can be measured by self-report anuadri.anu.edu.au Anstey KJ, et al. Prev Sci. 2013;14(4):411-421. Anstey KJ, et al. PLoS One. 2014;9(1):e86141
Aims of Evaluation Examine user experiences and perceptions of the ANU-ADRI and the feedback provided about their risk Examine users intentions for using their results and the potential outcomes of use of the ANU-ADRI by consumers Suggest possible changes to make the ANU-ADRI more adapted to users needs Participants completed the ANU-ADRI and an online evaluation survey
Participants n = 191, mean age 60 years, 72% female, 57% with university degree, 40% retired 26% had previously spoken to a health professional about their cognitive abilities Most commonly cited reasons for wanting to know risk: having a family history of AD or dementia (52%) worry about developing dementia (44%) curiosity (44%) Majority felt they would learn whether their risk was high or low (66%) and how to reduce their risk (59%)
Potential Benefits and Harms Ratings for whether potential negative outcomes (e.g. depression, anxiety, hopelessness) applied to the participants personally were lower than ratings for whether these applied to the community as a whole Suggests some concerns that others might be negatively impacted Ratings for whether positive outcomes (e.g. increased understanding of risk reduction, motivation to change behaviour) applied personally or to the community were similar Potential positive outcomes were considered more applicable than negative ones, both personally and to others
ANU-ADRI Evaluation Participants were generally satisfied with the ANU-ADRI as a risk assessment tool and found it easy to use 51% found the physical activity section confusing 74% of participants said they would recommend the ANU-ADRI to others Majority found their ANU-ADRI results easy to understand, helpful and motivating
ANU-ADRI Evaluation 37% got results better than they expected; 10% got results worse than they expected Suggests potential benefits in reassuring the worried well 66% said they were likely to change their behaviour based on their results Most likely to change behaviour for: physical activity (58%) cognitive activity (49%) fish intake (47%)
Conclusions ANU-ADRI well accepted by consumers as a tool to assess their risk of AD, provide helpful dementia risk reduction information and motivate behaviour change Strong community interest in access to dementia risk assessment and risk reduction information confirmed by large response to recruitment advertisements Participants were generally satisfied with their experience using the ANU-ADRI and with the results provided to them, although some areas for improvement
What s Next? BrainyApp version 2 Roll out of national YBM projects YBM for the workplace Your Story Matters Engaging general practitioners and other health professionals Pilot study examining whether ANU-ADRI risk score correlates with memory performance Using ANU-ADRI in intervention trials to reduce dementia risk
Acknowledgements Alzheimer s Australia: Dr Elodie O Connor Rachel Kabbani Dr Chris Hatherly ANU: Prof Kaarin Anstey Dr Nic Cherbuin Sarang Kim Funding: Dementia Collaborative Research Centres Chronic Disease Prevention and Service Improvement Fund Bupa Health Foundation auda Foundation
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