Research priorities to reduce the global burden of dementia by 2025.

At the First WHO Ministerial Conference on Global Action Against Dementia in March, 2015, 160 delegates, including representatives from 80 WHO Member States and four UN agencies, agreed on a call for action to reduce the global burden of dementia by fostering a collective effort to advance research. To drive this effort, we completed a globally representative research prioritisation exercise using an adapted version of the Child Health and Nutrition Research Initiative method. We elicited 863 research questions from 201 participants and consolidated these questions into 59 thematic research avenues, which were scored anonymously by 162 researchers and stakeholders from 39 countries according to five criteria. Six of the top ten research priorities were focused on prevention, identification, and reduction of dementia risk, and on delivery and quality of care for people with dementia and their carers. Other priorities related to diagnosis, biomarkers, treatment development, basic research into disease mechanisms, and public awareness and understanding of dementia. Research priorities identified by this systematic international process should be mapped onto the global dementia research landscape to identify crucial gaps and inform and motivate policy makers, funders, and researchers to support and conduct research to reduce the global burden of dementia. Efforts are needed by all stakeholders, including WHO, WHO Member States, and civil society, to continuously monitor research investments and progress, through international platforms such as a Global Dementia Observatory. With established research priorities, an opportunity now exists to translate the call for action into a global dementia action plan to reduce the global burden of dementia.

Agitation in cognitive disorders: International Psychogeriatric Association provisional consensus clinical and research definition.

BACKGROUND: Agitation is common across neuropsychiatric disorders and contributes to disability, institutionalization, and diminished quality of life for patients and their caregivers. There is no consensus definition of agitation and no widespread agreement on what elements should be included in the syndrome. The International Psychogeriatric Association formed an Agitation Definition Work Group (ADWG) to develop a provisional consensus definition of agitation in patients with cognitive disorders that can be applied in epidemiologic, non-interventional clinical, pharmacologic, non-pharmacologic interventional, and neurobiological studies. A consensus definition will facilitate communication and cross-study comparison and may have regulatory applications in drug development programs. METHODS: The ADWG developed a transparent process using a combination of electronic, face-to-face, and survey-based strategies to develop a consensus based on agreement of a majority of participants. Nine-hundred twenty-eight respondents participated in the different phases of the process. RESULTS: Agitation was defined broadly as: (1) occurring in patients with a cognitive impairment or dementia syndrome; (2) exhibiting behavior consistent with emotional distress; (3) manifesting excessive motor activity, verbal aggression, or physical aggression; and (4) evidencing behaviors that cause excess disability and are not solely attributable to another disorder (psychiatric, medical, or substance-related). A majority of the respondents rated all surveyed elements of the definition as "strongly agree" or "somewhat agree" (68-88% across elements). A majority of the respondents agreed that the definition is appropriate for clinical and research applications. CONCLUSIONS: A provisional consensus definition of agitation has been developed. This definition can be used to advance interventional and non-interventional research of agitation in patients with cognitive impairment.

Taking stock: A multistakeholder perspective on improving the delivery of care and the development of treatments for Alzheimer's disease.

Health-care stakeholders increasingly recognize that the scientific and economic challenges associated with Alzheimer's disease (AD) are simply too great for individual stakeholder groups to address solely from within their own silos. In the necessary spirit of collaboration, we present in this perspective a set of multicountry multistakeholder recommendations to improve the organization of existing AD and dementia care and the development of new treatments. In brief, the five recommendations are (1) health-care systems must make choices regarding the patient populations to be diagnosed and treated, (2) health-care systems should use an evidence-based standard of care, (3) increased collaboration between public and private institutions is needed to enhance research, (4) reimbursement end points need to be agreed on and validated, and (5) innovative business models should be used to spur the introduction of new medicines.

Importance of national plans for Alzheimer's disease and dementia.

Policy makers have a growing interest in Alzheimer's disease and other dementias, which is seen as the main health and social care challenge of the 21st century. The best way to manage dementia at a country level is by developing national plans, comparable to nationwide management of HIV/AIDS or diabetes. This has been done in a limited number of countries, like Australia, South Korea, France, UK and USA. There are some commonalities in the current plans and we have put those together as a learning experience. The value of these plans can increase when they are monitored and evaluated.

Dementia: a global health priority - highlights from an ADI and World Health Organization report.

Alzheimer's Disease International is the worldwide federation of Alzheimer associations that represent people with dementia and their families. Alzheimer's Disease International has commissioned a number of World Alzheimer Reports since 2009 and was involved in the recently launched report Dementia: A Public Health Priority by the World Health Organization. From these reports, we can learn about the growing impact of Alzheimer's disease and other dementias on our societies and the need to take action. Developing national Alzheimer plans is a key tool for this action.

Ageing and dementia in low and middle income countries-Using research to engage with public and policy makers.

While two thirds of the 24 million people with dementia worldwide live in low and middle income countries, very little research has been conducted to support policy making in these regions. Among the non-communicable diseases, dementia (in common with other chronic NCDs linked more to long-term disability than to mortality) has been relatively under-prioritized. International agreements, plans and policy guidelines have called for an end to ageist discrimination and a focus upon reducing disadvantage arising from poverty and the consequences of ill health. Social protection, access to good quality age-appropriate healthcare and addressing the problem of disability are all key issues. However, as yet, little progress has been made in addressing these concerns. In this review we outline the current international policy agenda for older individuals, and its specific relevance to those with dementia and other disabling non-communicable diseases. We consider the potential for epidemiological research to raise awareness, refine the policy agenda, and promote action, using the example of the dissemination strategy developed by the 10/66 Dementia Research Group.

Personal perspectives of persons with Alzheimer's disease and their carers: a global survey.

BACKGROUND: Alzheimer's disease (AD) impacts on persons with AD as well their families. This survey aimed to identify information/communication gaps, and quality of life and other issues, from both perspectives. METHODS: Persons with AD and their families or other carers from Europe, Brazil, and North America completed telephone interviews. Responses were analyzed by country. RESULTS: Five hundred two persons with AD and 614 carers were included. Issues important to persons with AD were treatment that helps control symptoms; feeling safe and supported at home; and ability to enjoy life. Most felt well-respected by family members. Families/carers considered a wider range of issues important, including detailed information about AD, regimens that are easier to comply with, and medication in a form that is easier to take. This reflects the fact that carers very often manage medications. CONCLUSIONS: This is the first global survey to include persons with AD themselves. Differences between responses from persons with AD and their caregivers highlight the importance of considering both viewpoints.