Search

The COVID‐19 pandemic has disproportionately affected more vulnerable populations, including those living with dementia. Over 50 million individuals worldwide are living with Alzheimer's disease (AD) or other dementia, and it is crucial to continue the fight against the condition during the global pandemic. Since the start of mandated lockdowns in March 2020, charity and non‐profit organizations that fund AD and related dementia research continue to respond to the needs of the AD research community, ensuring the momentum continues and accelerates. Members of the International Alzheimer's and Related Dementia Research Funder Consortium, a group of nearly 40 funding organizations that informally convene throughout the year to share updates and information, have taken a number of steps to ensure the continued support of the research community. Even during times of uncertainty, it is essential that the field moves forward to uncover preventions, diagnoses, and treatments for these diseases that affect many millions globally.

Purpose To review how outcomes of clinical utility are operationalized in current amyloid-PET validation studies, to prepare for formal assessment of clinical utility of amyloid-PET-based diagnosis. Methods Systematic review of amyloid-PET research studies published up to April 2020 that included outcomes of clinical utility. We extracted and analyzed (a) outcome categories, (b) their definition, and (c) their methods of assessment. Results Thirty-two studies were eligible. (a) Outcome categories were clinician-centered (found in 25/32 studies, 78%), patient-/caregiver-centered (in 9/32 studies, 28%), and health economics-centered (5/32, 16%). (b) Definition: Outcomes were mainly defined by clinical researchers; only the ABIDE study expressly included stakeholders in group discussions. Clinician-centered outcomes mainly consisted of incremental diagnostic value (25/32, 78%) and change in patient management (17/32, 53%); patient-/caregiver-centered outcomes considered distress after amyloid-pet-based diagnosis disclosure (8/32, 25%), including quantified burden of procedure for patients’ outcomes (n = 8) (1/8, 12.5%), impact of disclosure of results (6/8, 75%), and psychological implications of biomarker-based diagnosis (75%); and health economics outcomes focused on costs to achieve a high-confidence etiological diagnosis (5/32, 16%) and impact on quality of life (1/32, 3%). (c) Assessment: all outcome categories were operationalized inconsistently across studies, employing 26 different tools without formal rationale for selection. Conclusion Current studies validating amyloid-PET already assessed outcomes for clinical utility, although non-clinician-based outcomes were inconsistent. A wider participation of stakeholders may help produce a more thorough and systematic definition and assessment of outcomes of clinical utility and help collect evidence informing decisions on reimbursement of amyloid-PET.

STRiDE was an ambitious four-year project in seven countries aiming to build capacity around generating and using research to support the development of policies to improve quality of life of people with dementia and their carers. The project’s innovative approach combined rigorous academic research and hands-on civil society advocacy. This paper explores the project’s unique strategy for policy change and compiles case-studies from several of the STRiDE countries. Finally, we share lessons learned and next steps to keep momentum for policy change going in each of these countries – and beyond.

The increasing global prevalence of dementia demands concrete actions that are aimed strategically at optimizing processes that drive clinical innovation. The first step in this direction requires outlining hurdles in the transition from research to practice. The different parties needed to support translational processes have communication mismatches; methodological gaps hamper evidence-based decision-making; and data are insufficient to provide reliable estimates of long-term health benefits and costs in decisional models. Pilot projects are tackling some of these gaps, but appropriate methods often still need to be devised or adapted to the dementia field. A consistent implementation perspective along the whole translational continuum, explicitly defined and shared among the relevant stakeholders, should overcome the "research-versus-adoption" dichotomy, and tackle the implementation cliff early on. Concrete next steps may consist of providing tools that support the effective participation of heterogeneous stakeholders and agreeing on a definition of clinical significance that facilitates the selection of proper outcome measures.

Evidence from middle-income countries indicates high and increasing prevalence of dementia and need for services. However, there has been little investment in care, treatment or support for people living with dementia and their carers. The Strengthening Responses to Dementia in Developing Countries (STRiDE) project aims to build both research capacity and evidence on dementia care and services in Brazil, Indonesia, India, Jamaica, Kenya, Mexico and South Africa. This article presents the Theory of Change (ToC) approach we used to co-design our research project and to develop a strategic direction for dementia care, treatment and support, with stakeholders. ToC makes explicit the process underlying how a programme will achieve its impact. We developed ToCs in each country and across the STRiDE project with researchers, practitioners, people living with dementia, carers and policymakers at different levels of government. This involved (1) an initial ToC workshop with all project partners (43 participants); (2) ToC workshops in each STRiDE country (22–49 participants in each); (3) comparison between country-specific and overall project ToCs; (4) review of ToCs in light of WHO dementia guidelines and action plan and (5) a final review. Our experiences suggest ToC is an effective way to generate a shared vision for dementia care, treatment and support among diverse stakeholders. However, the project contribution should be clearly delineated and use additional strategies to ensure appropriate participation from people living with dementia and their carers in the ToC process.

Dementia is one of the greatest health challenges of our time. Every 3 s someone in the world develops dementia. There are already 50 million people living with it globally and this number is set to treble by 2050. Dementia disproportionally affects women on a global scale: more women than men develop dementia and a higher percentage of carers for people living with dementia are female. The impact of stigma and risk factors place an additional burden on women, who are also largely absent from research, data collection, decision-making, and policy development that may benefit them. This chapter will explore reasons for this imbalance and delve into how, through dementia policy, governments can take transformative steps to readjust the sex and gender balance toward equilibrium. We discuss the need for gender-based data, the important role of female leadership, and how to make transformative gender policy change. Our five key recommendations are to: • Close the gender-data gap • Increase gender-based research and clinical trials • Expand advocacy for gender-specific responses for people living with dementia • Encourage development of gender-transformational dementia policies • Promote inclusion of women leaders • Foster education of girls and young women.

Background Dementia and COVID-19 share the same key risk factor - age As the world reacted to the pandemic it became evident that people living with dementia were an exceptionally high-risk group;disruption to the diagnosis pathway, provision of post diagnostic support, interruptions to research and trials Alzheimer's Disease International responded quickly to support our global network of 102 associations, many challenged with having to re-invent their services, including withdrawal of face-to-face support plus providing timely information, support and advocacy interventions to partners Method Early 2020 ADI engaged our global associations to gauge the concern around COVID-19, with insight from our member association in China Regular contact with the WHO and our international partners gave us impetus to adapt our programme of work Result ADI produced an online COVID-19 resource;a go-to for information, advice, experience and learning A key resource, an advisory video from Prof Huali Wang, China, offering health and care advice - subsequently translated into a number of co-authored articles in The Lancet;followed by a paper on 'Difficult decisions about hospital admission and triage' Through series of global webinars ADI provided up to the minute experience the scarcity of resources;life/ deaths decision making and the rights of people with dementia to treatment Future gazing sessions followed to ascertain the impact of COVID-19 on the diagnosis pathway, national plans, trials and on prevalence rates Thorough our engagement with the WHO, ADI contributed to the creation of an inter-agency mental health and psychosocial support resource and participated in the Civil Society Working Group on NCDs Media engagement brought vital attention and coverage to dementia, through titles including BBC World & Futures, The Economist, The Telegraph Conclusion Timely responses, interventions and the provision of COVID-19 resources has enabled our global associations to adapt their operations to better respond to the crisis and to review operational and policy strategies Through partnership working, timely sharing of information and advice, we have facilitated a strong reaction and positive response throughout the dementia sector to this extraordinary period

Dementia UK and The Charity for Civil Servants teamed up to test the acceptability and feasibility of delivering a work-based Admiral Nurse clinic to support family carers during their employed working hours. This paper presents some of the learning from this innovative approach.