General population perspectives of dementia risk reduction and the implications for intervention: A systematic review and thematic synthesis of qualitative evidence

Abstract

Background Evidence for the potential prevention of dementia through lifestyle risk factor modification is growing and has prompted examination of implementation approaches. Understanding the general population’s perspectives regarding dementia risk reduction is key to implementation. This may provide useful insights into more effective and efficient ways to help people change relevant beliefs, motivations and behaviour patterns. We conducted a systematic review and thematic synthesis of qualitative evidence to develop an integrated model of general population dementia risk reduction perspectives and the implications for intervention in research and implementation contexts. Methods and findings We searched electronic databases, supplemented by lateral search techniques, to identify studies published since 1995 reporting qualitative dementia risk reduction perspectives of the non-expert general population who do not have dementia. Thematic synthesis, incorporating an expert panel discussion, was used to identify overarching themes and develop an integrated model to guide intervention to support individuals to adopt and maintain dementia risk reduction behaviour patterns. Quality of included studies and confidence in review findings were systematically appraised. We included 50 papers, reflecting the views of more than 4,500 individuals. Main themes were: 1) The need for effective education about a complex topic to prevent confusion and facilitate understanding and empowerment; 2) Personally relevant short- and long-term benefits of dementia risk reduction behaviour patterns can generate value and facilitate action; 3) Individuals benefit from trusted, reliable and sensitive support to convert understanding to personal commitment to relevant behaviour change; 4) Choice, control and relevant self-regulatory supports help individuals take-action and direct their own progress; 5) Collaborative and empowering social opportunities can facilitate and propagate dementia risk reduction behaviour change; 6) Individual behaviour patterns occur in social contexts that influence beliefs through heuristic processes and need to be understood. Findings indicate that, for intervention: 1) education is key, but both content and delivery need to be tailored; 2) complementary interventions to support self-regulation mechanisms and social processes will increase education effectiveness; 3) co-design principles should guide intervention design and delivery processes; 4) all interventions need to be supported by context-specific data. Conclusions This systematic review and thematic synthesis provides a comprehensive, integrated model of the dementia risk reduction perspectives of the general population and intervention approaches to support behaviour change that can be applied in clinical trial and real-world implementation settings. Findings extend existing knowledge and may assist more effective intervention design and delivery.

Island Study Linking Aging and Neurodegenerative Disease (ISLAND) Targeting Dementia Risk Reduction: Protocol for a Prospective Web-Based Cohort Study

“…This sample offers a meaningful slice of the population for the project’s public health objectives. Eligibility criteria are age 50 years or older (based on the likelihood of higher personal health motivations and to provide maximum opportunity for observing longitudinal changes from midlife in behavioral, cognitive, and biological markers [ 35 ]), resident of Tasmania, having an email address, and having access to the internet. Invitations to join the study are regularly and widely distributed using web-based, print, and broadcast media; community talks; information booths; social media; flyers; and posters.…”

“…Emerging evidence indicates help-seeking older adults find that knowing their own risk profile information improves their understanding of how they can reduce their risk of developing dementia [ 33 ]. This is encouraging and offers support for providing personalized feedback to help increase the personal resonance of risk reduction messages and to stimulate health behavior change [ 34 , 35 ]. This knowledge, understanding that it is possible to change one’s health status, having access to the opportunity and support required to take action, and being motivated to do so are all considered to be important contributing factors for achieving effective health-related behavior change [ 36 , 37 ].…”

Dementia Risk Scores and Their Role in the Implementation of Risk Reduction Guidelines

“…Additionally, it is beneficial from a patient perspective to know their own level of risk for dementia. Risk scores help provide feedback on the effectiveness of preventive health activities in (close to) real-time and provide a target for patients to work toward ( 49 , 50 ).…”

Frailty, e-health and prevention of late-onset Alzheimer disease and related disorders: it is time to take action

“…Disease-modifying treatments for ADRD remain elusive [ 8 ]. Recent literature including systematic reviews showed that up to 40% of late-onset ADRD may be prevented or at least delayed by addressing modifiable risk factors (MRFs) [ 2 , 9 ]. The interaction of MRFs in incident ADRD is complex and challenging because of the long-time frames between intervention on MRFs and the occurrence of ADRD [ 9 ].…”

“…Recent literature including systematic reviews showed that up to 40% of late-onset ADRD may be prevented or at least delayed by addressing modifiable risk factors (MRFs) [ 2 , 9 ]. The interaction of MRFs in incident ADRD is complex and challenging because of the long-time frames between intervention on MRFs and the occurrence of ADRD [ 9 ]. Because of the potential benefits of acting on MFRs, the World Health Organization (WHO) has called for immediate implementation in clinical practice of actions targeting MRFs for ADRD reduction [ 3 ].…”