The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All

Author:

Rosen Allyson C.12,Arias Jalayne J.3,Ashford J. Wesson12,Blacker Deborah4,Chhatwal Jasmeer P.4,Chin Nathan A.5,Clark Lindsay5,Denny Sharon S.6,Goldman Jill S.7,Gleason Carey E.5,Grill Joshua D.8,Heidebrink Judith L.9,Henderson Victor W.10,Lavacot James A.1,Lingler Jennifer H.11,Menon Malavika12,Nosheny Rachel L.13,Oliveira Fabricio F.14,Parker Monica W.15,Rahman-Filipiak Annalise16,Revoori Anwita17,Rumbaugh Malia C.18,Sanchez Danurys L.19,Schindler Suzanne E.20,Schwarz Christopher G.21,Toy Leslie1,Tyrone Jamie22,Walter Sarah23,Wang Li-san24,Wijsman Ellen M.25,Zallen Doris T.26,Aggarwal Neelum T.27,

Affiliation:

1. VA Medical Center-Palo Alto, Palo Alto, CA, USA

2. Stanford University, School of Medicine, Stanford, CA, USA

3. School of Public Health Georgia State University, Atlanta, GA, USA

4. Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

5. University of Wisconsin School of Medicine and Public Health, Madison, WI, USA

6. The Association for Frontotemporal Degeneration, King of Prussia, PA, USA

7. Columbia University Irving Medical Center, New York, NY, USA

8. University of California, Irvine, Irvine, CA, USA

9. Michigan Alzheimer’s Disease Research Center, University of Michigan, Ann Arbor, MI, USA

10. Departments of Epidemiology & Population Health and of Neurology & Neurological Sciences, Stanford University, Stanford, CA, USA

11. University of Pittsburgh, Pittsburgh, PA, USA

12. West Chester East High School, West Chester, PA, USA

13. Center for Imaging of Neurodegenerative Diseases, San Francisco Veterans Affairs Medical Center, San Francisco, CA, USA

14. Federal University of São Paulo - UNIFESP, São Paulo, SP, Brazil

15. Emory Goizueta Alzheimer’s Disease Research Center, Atlanta, GA, USA

16. University of Michigan, Ann Arbor, MI, USA

17. Sharon High School, Sharon, MA, USA

18. Indiana University School of Medicine, Indianapolis, IN, USA

19. Columbia University, New York, NY, USA

20. Department of Neurology, Washington University School of Medicine, Saint Louis, MO, USA

21. Department of Radiology, Mayo Clinic, Rochester, MN, USA

22. Beating Alzheimer’s by Embracing Science, Ramona, CA, USA

23. Alzheimer’s Therapeutic Research Institute/USC, San Diego, CA, USA

24. University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA

25. University of Washington, Seattle, WA, USA

26. Virginia Tech, Blacksburg, VA, USA

27. Rush University Medical Center, Chicago, IL, USA

Abstract

The brain changes of Alzheimer’s disease and other degenerative dementias begin long before cognitive dysfunction develops, and in people with subtle cognitive complaints, clinicians often struggle to predict who will develop dementia. The public increasingly sees benefits to accessing dementia risk evidence (DRE) such as biomarkers, predictive algorithms, and genetic information, particularly as this information moves from research to demonstrated usefulness in guiding diagnosis and clinical management. For example, the knowledge that one has high levels of amyloid in the brain may lead one to seek amyloid reducing medications, plan for disability, or engage in health promoting behaviors to fight cognitive decline. Researchers often hesitate to share DRE data, either because they are insufficiently validated or reliable for use in individuals, or there are concerns about assuring responsible use and ensuring adequate understanding of potential problems when one’s biomarker status is known. Concerns include warning people receiving DRE about situations in which they might be compelled to disclose their risk status potentially leading to discrimination or stigma. The Advisory Group on Risk Evidence Education for Dementia (AGREEDementia) welcomes all concerned with how best to share and use DRE. Supporting understanding in clinicians, stakeholders, and people with or at risk for dementia and clearly delineating risks, benefits, and gaps in knowledge is vital. This brief overview describes elements that made this group effective as a model for other health conditions where there is interest in unfettered collaboration to discuss diagnostic uncertainty and the appropriate use and communication of health-related risk information.

Publisher

IOS Press

Subject

Psychiatry and Mental health,Geriatrics and Gerontology,Clinical Psychology,General Medicine,General Neuroscience

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