Toward Better Alzheimer’s Research Information Sources for the Public

2013 ◽  
Vol 28 (2) ◽  
pp. 108-110
Author(s):  
Perry W. Payne

The National Plan to Address Alzheimer's Disease calls for a new relationship between researchers and members of the public. This relationship is one that provides research information to patients and allows patients to provide ideas to researchers. One way to describe it is a “bidirectional translational relationship.” Despite the numerous sources of online and offline information about Alzheimer's disease, there is no information source which currently provides this interaction. This article proposes the creation an Alzheimer's research information source dedicated to monitoring Alzheimer's research literature and providing user friendly, publicly accessible summaries of data written specifically for a lay audience. This information source should contain comprehensive, updated, user friendly, publicly available, reviews of Alzheimer's research and utilize existing online multimedia/social networking tools to provide information in useful formats that help patients, caregivers, and researchers learn rapidly from one another.

Neurology ◽  
2017 ◽  
Vol 89 (23) ◽  
pp. 2381-2391 ◽  
Author(s):  
Roderick A. Corriveau ◽  
Walter J. Koroshetz ◽  
Jordan T. Gladman ◽  
Sophia Jeon ◽  
Debra Babcock ◽  
...  

Goal 1 of the National Plan to Address Alzheimer’s Disease is to prevent and effectively treat Alzheimer disease and Alzheimer disease–related dementias by 2025. To help inform the research agenda toward achieving this goal, the NIH hosts periodic summits that set and refine relevant research priorities for the subsequent 5 to 10 years. This proceedings article summarizes the 2016 Alzheimer's Disease–Related Dementias Summit, including discussion of scientific progress, challenges, and opportunities in major areas of dementia research, including mixed-etiology dementias, Lewy body dementia, frontotemporal degeneration, vascular contributions to cognitive impairment and dementia, dementia disparities, and dementia nomenclature.


2016 ◽  
Vol 117 (3/4) ◽  
pp. 251-278 ◽  
Author(s):  
Raj Kumar Bhardwaj ◽  
Margam Madhusudhan

Purpose – The purpose of this paper is to compare the online legal information sources available in law libraries in India. Design/methodology/approach – Evaluation method followed with the help of specially designed checklist for e-resources in the field of law in India. The structured checklist was designed keeping in view of the objectives and e-resources/databases existing in Indian libraries, comprising 189 dichotomous questions and categorized into 12 broad categories. Findings – The study revealed that the study legal information sources are lagging behind in exploiting the full potential of Web 2.0 features. No study legal information source has integrated Web 2.0 tools with contents and provision to contribute the contents by user any time, irrespective of location, except online legal information system (OLIS). Majority of e-resources are lacking search features, general features, Web 2.0 tools, better help features and provision to contribute contents by the users. Besides this, a mobile-based view is not available in majority of sources, and open access resources are lacking user-friendly features. Of the 16 legal information resources, only five have all the four citations search parameters. The study reveals that the OLIS has the maximum features and ranked “excellent”, followed by Manupatra ranked “average”. Half of study online legal information sources are ranked “needs improvement” and 37.5 per cent ranked “below average”. Practical implications – The findings of the study will not only guide the law librarians to subscribe/renew legal databases in their libraries but also improve the legal information literacy among the users for effective use of online legal information sources. It is hoped that the evaluation of online legal information sources will enhance the user’s awareness and increase the use. Originality/value – The findings of the study will not only guide the legal libraries to improve their online legal information sources, particularly, better help features and integrated content with Web 2.0 tools, but also provide guidelines for newly established legal libraries in India.


2012 ◽  
Vol 27 (6) ◽  
pp. 388-396 ◽  
Author(s):  
Baldwin Van Gorp ◽  
Tom Vercruysse ◽  
Jan Van den Bulck

Starting point of this study was the assumption that Alzheimer’s disease is made worse for the person who has the disease by the negative regard in which the illness is held by society. The aim was to test by means of a campaign advertisement whether more nuanced counterframes could have an impact while remaining credible and comprehensible to the public. A sample of thousand people living in Belgium evaluated the campaign in an experimental design. This revealed that all the versions tested achieved a high average evaluation. The ad in which the heading referred to the fear of death and degeneration was judged to be most attention-grabbing, easier to understand, and more credible than the alternative heading with the idea that someone with Alzheimer’s could still enjoy playing cards. Together, these findings provided a basis for the use of counterframes to generating a more nuanced image of Alzheimer’s disease.


Author(s):  
Angela M Lunde ◽  
Ronald C Petersen ◽  
John A Lucas

In the United States, the National Alzheimer’s Project Act was signed into law in January 2011, and the first National Plan appeared just over 12 months later, with five goals: to prevent and effectively treat Alzheimer’s disease by 2025, to enhance care quality and efficiency, to expand support for people with Alzheimer’s disease and their families, to enhance public awareness and engagement, and to improve data to track progress. The National Plan has seen a rise in research funding (currently standing at US$1.4 billion). Individual states, at the same time, began discussions about initiatives aimed at addressing personal, societal, and financial implications of Alzheimer’s disease. An example is from Minnesota where counselling and support for caregivers are provided, with an estimated saving for the state of Minnesota of US$970 million by 2025. In addition, a number of treatment trials are under way, looking at the effect of monoclonal antibodies on Alzheimer’s disease and a series of genetic studies.


2020 ◽  
Author(s):  
Marthe Smedinga ◽  
Eline M Bunnik ◽  
Edo Richard ◽  
Maartje H N Schermer

Abstract Background and Objectives The meaning of Alzheimer’s disease (AD) is changing in research. It now refers to a pathophysiological process, regardless of whether clinical symptoms are present. In the lay literature, on the other hand, AD is understood as a form of dementia. This raises the question of whether researchers and the lay audience are still talking about the same thing. If not, how will these different understandings of AD shape perspectives on (societal) needs for people with AD? Research Design and Methods We use framing analysis to retrieve the understandings of the term AD that are upheld in the research literature and in national Dutch newspaper articles. We make explicit how the framings of AD steer our normative attitudes toward the disease. Results In the analyzed research articles, AD is framed as a pathological cascade, reflected by biomarkers, starting in cognitively healthy people and ending, inevitably, in dementia. In the lay literature, AD is used as a synonym for dementia, and an AD diagnosis is understood as an incentive to enjoy “the time that is left.” Discussion and Implications The two different uses of the term AD in research and in the lay literature may result in misunderstandings, especially those research framings that falsely imply that people with AD biomarkers will inevitably develop dementia. Adoption of the research understanding of AD in clinical practice will have normative implications for our view on priority setting in health care. For example, it legitimizes biomarker testing in people without dementia as improving “diagnostic” certainty.


2012 ◽  
Vol 2012 ◽  
pp. 1-9 ◽  
Author(s):  
Robert J. Blendon ◽  
John M. Benson ◽  
Elizabeth M. Wikler ◽  
Kathleen J. Weldon ◽  
Jean Georges ◽  
...  

The objective of this paper is to understand how the public’s beliefs in five countries may change as more families have direct experience with Alzheimer’s disease. The data are derived from a questionnaire survey conducted by telephone (landline and cell) with 2678 randomly selected adults in France, Germany, Poland, Spain, and the United States. The paper analyzes the beliefs and anticipated behavior of those in each country who report having had a family member with Alzheimer’s disease versus those who do not. In one or more countries, differences were found between the two groups in their concern about getting Alzheimer’s disease, knowledge that the disease is fatal, awareness of certain symptoms, and support for increased public spending. The results suggest that as more people have experience with a family member who has Alzheimer’s disease, the public will generally become more concerned about Alzheimer’s disease and more likely to recognize that Alzheimer’s disease is a fatal disease. The findings suggest that other beliefs may only be affected if there are future major educational campaigns about the disease. The publics in individual countries, with differing cultures and health systems, are likely to respond in different ways as more families have experience with Alzheimer’s disease.


2012 ◽  
Vol 8 (3) ◽  
pp. 234-236 ◽  
Author(s):  
Zaven S. Khachaturian ◽  
Ara S. Khachaturian ◽  
William Thies

2020 ◽  
Vol 21 (16) ◽  
pp. 5783 ◽  
Author(s):  
Keishi Miyazawa ◽  
Hisanori Fukunaga ◽  
Yasuko Tatewaki ◽  
Yumi Takano ◽  
Shuzo Yamamoto ◽  
...  

Alzheimer’s disease (AD) is a common neurodegenerative disease and a major contributor to progressive cognitive impairment in an aging society. As the pathophysiology of AD involves chronic neuroinflammation, the resolution of inflammation and the group of lipid mediators that actively regulate it—i.e., specialized pro-resolving lipid mediators (SPMs)—attracted attention in recent years as therapeutic targets. This review focuses on the following three specific SPMs and summarizes their relationships to AD, as they were shown to effectively address and reduce the risk of AD-related neuroinflammation: maresin 1 (MaR1), resolvin D1 (RvD1), and neuroprotectin D1 (NPD1). These three SPMs are metabolites of docosahexaenoic acid (DHA), which is contained in fish oils and is thus easily available to the public. They are expected to become incorporated into promising avenues for preventing and treating AD in the future.


Sign in / Sign up

Export Citation Format

Share Document