Alzheimer's Research UK

Translation of evidence about dementia risk and its reduction into effective, equitable public health policy is a major challenge. To address this challenge, the National Institute for Health and Care Research Policy Research Unit in Dementia and Neurodegeneration at Queen Mary University of London (DeNPRU-QM) convened a multidisciplinary panel of 40 experts from across England, with diverse lived, academic, clinical, policy and advocacy experience, at various career stages, and of diverse gender and ethnicity, to develop actionable policy recommendations for dementia risk reduction. Through a 2-day in-person workshop and a subsequent three-round modified Delphi survey, the panel evaluated and refined statements on dementia prevention. The panel achieved consensus on 56 recommendations in four domains: public health messaging, individual-level interventions, population-level interventions and research commissioning. A key priority across all domains was the need to consider and address health inequalities so that prevention efforts do not exacerbate existing disparities. Our recommendations provide policymakers with a robust foundation for designing and implementing an evidence-based dementia prevention strategy in England and provide guidance that can inform approaches in other countries and contexts. By prioritizing clear communication, targeted intervention and sustained research investment, the recommendations can help to address structural inequities and advance dementia risk reduction. Ongoing cross-sector advocacy will be crucial in driving policy adoption and implementation. Translation of evidence about dementia risk into effective public health policy is a challenge. In this Consensus Statement, Demnitz-King and colleagues present 56 policy recommendations for dementia prevention, providing policymakers with a foundation for designing and implementing evidence-based dementia prevention strategies, prioritizing clear communication, targeted intervention and sustained research investment.

Participants in clinical trials should be pro-actively offered the results of trials in which they have participated. This should be done in a way that is accessible and understandable for all participants. People who have taken part in research have a right to know the results of the studies in which they have taken part and should be given the option of receiving these results. Most trial participants want to receive the overall results. Key reasons for sharing results include respecting participants’ contributions, enhancing their understanding of research benefits, increasing transparency, and potentially improving recruitment and retention. We propose 8 principles to guide sharing of results with trial participants: 1. Trial teams should pro-actively offer overall study results to all clinical trial participants, irrespective of what the results show. 2. Participants should be given the choice of whether to receive research results. 3. Results should be offered to participants in a timely manner. 4. Trial teams should manage participants’ expectations around when the results will be available. 5. Results should be offered in a way that is accessible to participants, both in terms of the communication mechanism and the content. 6. Patient and public involvement is essential in sharing results with participants. 7. Sharing results with participants requires resources. 8. Consideration needs to be given to potential barriers/challenges to sharing results with participants from the planning stage of the study.

Despite recognition of the importance of patient and public involvement (PPI) in healthcare improvement, compelling examples of “what good looks like” for PPI in co-design of improvement efforts, how it might be done, and formalisation of methods and reporting are lacking. In this article, we sought to address these gaps through a case study to illustrate a principled approach to integrating PPI into the co-design of healthcare improvement. The case study aimed to involve maternity service users in the co-design of clinical resources for a maternity improvement programme, using a four-stage approach: 1) establishing guiding principles for PPI in the programme, 2) structuring PPI for the programme, 3) co-designing improvements with PPI, and 4) seeking feedback on PPI in the co-design process. Partnership-focused frameworks and other literature on PPI and co-design informed the guiding principles. The structure included a five-member PPI group who provided continuous input, and an additional 15-member PPI group who met twice to discuss experiences of obstetric emergency. PPI in the co-design processes shaped the development of the resources in multiple ways, such as strengthening the prominence given to listening to those in labour and their birth partners, ensuring inclusivity of visuals and language, and developing communication principles informing all resources. Feedback suggested that PPI members felt valued, listened to, and supported to provide unanticipated contributions. The case study demonstrated how a principled approach to PPI enabled service users to play a key role in co-design of clinical resources aimed at improving the quality and safety of maternity care in the UK. Further case studies, across different clinical areas and with varying levels of resources, are needed to validate this approach.

Alzheimer’s disease (AD) is an escalating global challenge, with more than 40 million people affected, and this number is projected to increase to more than 100 million by 2050. While amyloid-targeting antibody treatments (lecanemab and donanemab) are a significant step forward, the benefits of these therapies remain limited. This highlights the necessity for safe and effective compounds that offer greater therapeutic benefits to the majority of individuals with or at risk of AD. Drug repurposing allows for a cost-effective, time-efficient strategy to accelerate the availability of treatments, owing to the availability of safety information. This study focuses on the third iteration of the Delphi consensus programme aimed at identifying new high-priority drug candidates for repurposing in AD. An international expert panel comprising academics, clinicians and industry representatives was convened. Through a combination of anonymized drug nominations, systemic evidence reviews, iterative consensus rankings, and lay advisory inputs, drug candidates were evaluated and ranked based on rational, non-clinical, and clinical evidence and overall safety profiles. Among the 80 candidates that were nominated by the expert panel, seven underwent review, with only three candidates meeting the following consensus criteria of relevant mechanisms for targeting neurodegenerative pathways, non-clinical efficacy, and tolerability in older individuals. The three agents were: [1] the live attenuated herpes zoster (HZ) vaccine (Zostavax) [2], sildenafil, a phosphodiesterase-5 (PDE-5) inhibitor, and [3] riluzole, a glutamate antagonist. The HZ vaccine additionally offers potential for population-level dementia risk reduction. This Delphi consensus identified three high-priority drug repurposing candidates for AD with favourable safety profiles and mechanistic plausibility, which are considered suitable for pragmatic clinical trials, including remote or hybrid designs. The PROTECT platform, which supports international cohorts in the UK, Norway, and Canada, offers a well-established means to conduct such trials effectively, thus helping to accelerate the evaluation and potential deployment of these drug candidates to benefit individuals with or at risk for AD.