A roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025

Abstract

ObjectiveNational and global dementia plans have focused on the research ambition to develop a cure or disease‐modifying therapy by 2025, with the initial focus on investment in drug discovery approaches. We set out to develop complementary research ambitions in the areas of prevention, diagnosis, intervention, and care and strategies for achieving them.MethodsAlzheimer's Society facilitated a taskforce of leading UK clinicians and researchers in dementia, UK funders of dementia research, people with dementia, and carer representatives to develop, using iterative consensus methodology, goals and recommendations to advance dementia research.ResultsThe taskforce developed 5 goals and 30 recommendations. The goals focused on preventing future cases of dementia through risk reduction, maximising the benefit of a dementia diagnosis, improving quality of life, enabling the dementia workforce to improve practice, and optimising the quality and inclusivity of health and social care systems. Recommendations addressed gaps in knowledge and limitations in research methodology or infrastructure that would facilitate research in prioritised areas. A 10‐point action plan provides strategies for delivering the proposed research agenda.ConclusionsBy creating complementary goals for research that mirror the need to find effective treatments, we provide a framework that enables a focus for new investment and initiatives. This will support a broader and more holistic approach to research on dementia, addressing prevention, surveillance of population changes in risk and expression of dementia, the diagnostic process, diagnosis itself, interventions, social support, and care for people with dementia and their families.

The relationship between perceived functional difficulties and the ability to live well with mild‐to‐moderate dementia: Findings from the IDEAL programme

“…11 The dependence framework and the "disablement process" theory propose that increased dependence negatively affects quality of life (QoL). 16 Recent dementia policy has prioritised enabling people to "live well" with dementia by improving health care and the quality of support offered to people with dementia. [13][14][15] In the United Kingdom, the Alzheimer's Society identifies improving the QoL of people with dementia by promoting functional ability and independence as one of its five priority goals for dementia care research.…”

“…[13][14][15] In the United Kingdom, the Alzheimer's Society identifies improving the QoL of people with dementia by promoting functional ability and independence as one of its five priority goals for dementia care research. 16 Recent dementia policy has prioritised enabling people to "live well" with dementia by improving health care and the quality of support offered to people with dementia. 17,18 A primary goal for dementia care is to maximise the ability to live well with the condition.…”

A roadmap to develop dementia research capacity and capability in Pakistan: A model for low‐ and middle‐income countries

“…A landmark was the 2013 G8 Dementia Summit, “Global Action Against Dementia,” that led to the World Health Organization' (WHO) research question prioritization exercise [13,14]. Other initiatives include the United Kingdom's Alzheimer's Society's “Roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025” [15], the USA's “International Alzheimer's Disease Research Portfolio” [16,17], and the European Union's “Joint Program for Neurodegenerative Disease Research” [18]. …”

“…Furthermore, in the WHO-led dementia research prioritization exercise [15], only 10% of the participants were from middle-income countries. None was from countries categorized as “low” or “least” developed, notably South Asia.…”

Public involvement in the dissemination of the North West Coast Household Health Survey: Experiences and lessons of co‐producing research together

“…PPI enables members of the public with lived experiences of a health‐care condition such as dementia or service history such as mental health treatments to actively shape research. PPI can take many shapes and forms, from identifying research priorities to developing questionnaires and interpreting and disseminating findings . Past research suggests that members of the public have reported to feel that their contributions have had a positive impact on shaping health research .…”