Advances in Alzheimer's imaging are changing the experience of Alzheimer's disease

Shana D. Stites1, Richard Milne2, Jason Karlawish1,3
1Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
2Department of Public Health and Primary Care, Institute of Public Health, University of Cambridge School of Clinical Medicine, Cambridge, UK
3Department of Medicine, University of Pennsylvania, Philadelphia, Pa. USA

Tóm tắt

AbstractNeuroimaging is advancing a new definition of Alzheimer's disease (AD). Using imaging biomarkers, clinicians may begin to diagnose the disease by identifying pathology and neurodegeneration in either cognitively impaired or unimpaired adults. This “biomarker‐based” diagnosis may allow clinicians novel opportunities to use interventions that either delay the onset or slow the progression of cognitive decline, but it will also bring novel challenges. How will changing the definition of AD from a clinical to a biomarker construct change the experience of living with the disease? Knowledge of AD biomarker status can affect how individuals feel about themselves (internalized stigma) and how others judge them (public stigma). Following a review of AD stigma, we appraise how advances in diagnosis may enable or interrupt its transfer from clinical to preclinical stages and then explore conceptual and pragmatic challenges to addressing stigma in routine care.

Tài liệu tham khảo

Goffman E., 1963, Stigma; Notes on the Management of Spoiled Identity 10.1111/j.1467-9566.2009.01161.x 10.1146/annurev-soc-071312-145702 10.1093/sw/52.1.31 10.2217/ahe.12.42 10.1017/S0144686X10000693 10.1080/10410236.2016.1255847 10.1002/gps.876 Sperling R.A., 2014, The A4 study: stopping AD before symptoms begin?, Sci Transl Med, 228, 228fs13 10.1146/annurev.soc.27.1.363 10.1007/978-94-007-4276-5_25 10.1111/j.1741-6612.2006.00153.x 10.1016/j.jalz.2009.04.198 10.1177/1049732309358330 10.1016/j.socscimed.2011.12.045 10.1016/j.socscimed.2015.08.031 10.1097/WAD.0b013e3181f32594 10.3928/19404921-20090401-04 10.1111/j.1467-9566.2012.01481.x Cohen L., 2000, No Aging in India: Alzheimer's, The Bad Family, and Other Modern Things Batsch N.L., 2012, World Alzheimer Report 2012, Overcoming the Stigma of Dementia 10.1037/0022-3514.55.5.738 10.2105/AJPH.2012.301147 10.1007/s10823-008-9075-5 10.1037/0022-3514.82.6.878 Kane M.N., 2002, Awareness of ageism, motivation, and countertransference in the care of elders with Alzheimer's disease, Am J Alzheimers Dis Other Demen, 17, 101, 10.1177/153331750201700206 10.4065/81.3.300 Handbook of Mental Health and Aging–2nd Edition 1992. Available at:https://www.elsevier.com/books/handbook‐of‐mental‐health‐and‐aging/birren/978‐0‐12‐101277‐9. Accessed September 5 2017. 10.1093/geront/48.4.517 10.3109/09638231003728166 Calasanti T.M., 2001, Gender, Social Inequalities, and Aging 10.1016/j.jalz.2012.05.2082 10.1111/1468-0009.12076 10.1016/j.jalz.2018.01.006 Darnell K.R., 2011, African American Participation in Alzheimer's Disease Research That Includes Brain Donation, Am J Alzheimers Dis Other Dement, 26, 469, 10.1177/1533317511423020 Heatherton T.F., 2003, The Social Psychology of Stigma 10.1080/13557858.1997.9961813 10.1186/s40985-016-0025-4 10.1001/jama.287.3.329 Phillipson L., 2012, Exploring dementia and stigma beliefs, Alzheimers Aust 10.1192/bjp.177.1.4 10.1177/1471301207085366 Alzheimer's Association National Plan Milestone Workgroup, 2014, 2014 Report on the Milestones for the US National Plan to Address Alzheimer's Disease, Alzheimers Dement, 10, S430 Anderson L.A., 2014, Expanding efforts to address Alzheimer's disease: the Healthy Brain Initiative, Alzheimers Dement, 10, S453 10.1097/00002093-200107000-00005 Link BG Cullen FT Mirotznik J Struening E. The consequences of stigma for persons with mental illness: Evidence from the social sciences. 1992. 10.1177/073346488800700201 Scheff T.J., 1994, Microsociology: Discourse, Emotion, and Social Structure 10.1002/(SICI)1520-6394(2000)11:1<38::AID-DA6>3.0.CO;2-E 10.1212/WNL.46.1.130 10.1016/j.cnur.2014.02.008 10.1002/gps.1367 10.1093/geronb/54B.2.P100 10.1097/00002093-199509020-00007 10.1212/WNL.46.1.121 Jolley D.J., 2000, Stigma and Alzheimer's disease: causes, consequences and a constructive approach, Int J Clin Pract, 54, 117, 10.1111/j.1742-1241.2000.tb11861.x Cox C.B., 2007, Dementia and Social Work Practice: Research and Interventions 10.2307/2137304 10.1016/j.anr.2014.02.006 Francesca C., 2011, Help Wanted? Providing and Paying for Long‐Term Care: Providing and Paying for Long‐Term Care Allen M.N., 2012, A Look Inside Alzheimer's 10.1002/(SICI)1099-1166(199611)11:11<987::AID-GPS422>3.0.CO;2-V 10.1037/0022-3514.69.5.797 10.1176/appi.ajp.2013.12121590 10.1093/geront/gnr117 10.1111/1467-9566.t01-1-00142 10.1016/j.archger.2008.05.004 10.1002/gps.1268 10.1186/1471-2318-11-75 10.1155/2016/8316045 10.1037/0882-7974.18.2.250 Mannion E., 2008, Alzheimer's disease: the psychological and physical effects of the caregiver's role. Part 2, Nurs Older People, 20, 33, 10.7748/nop2008.05.20.4.33.c8221 10.1017/S1041610212000658 10.1177/0002764294038002013 Van Gorp B., 2012, Toward a more nuanced perception of Alzheimer's disease: designing and testing a campaign advertisement, Am J Alzheimers Dis Dementiasr, 6, 388, 10.1177/1533317512454707 10.1136/bmj.316.7133.762 10.1097/00019442-199821001-00011 10.1016/j.jalz.2017.09.003 10.2217/nmt.12.7 10.1192/bjp.178.3.281 Taylor A. The Effects of Stigma on Access to Care and Services. Presented at the Research Summit on Dementia Care  2017. 10.1016/j.jaging.2004.01.007 10.1017/S1041610208007060 10.1186/alzrt205 National Plan to Address Alzheimer's Disease: 2014 Update. ASPE 23‐Nov‐2015 Available at:https://aspe.hhs.gov/pdf‐document/national‐plan‐address‐alzheimers‐disease‐2014‐update. Accessed March 29 2017. Alzheimer Europe. 2013 Alzheimer Europe Report: The Ethical Issues Linked to the Perceptions and Portrayal of Dementia and People with Dementia.2013 Available at:http://www.alzheimer‐europe.org/Ethics/Ethical‐issues‐in‐practice/2013‐The‐ethical‐issues‐linked‐to‐the‐perceptions‐and‐portrayal‐of‐dementia‐and‐people‐with‐dementia. Accessed March 20 2018. Advisory Council July 2017 Meeting Presentation: Implications of a Biologically Based Definition. ASPE 27‐Jul‐2017 Available at:https://aspe.hhs.gov/advisory‐council‐july‐2017‐meeting‐presentation‐implications‐biologically‐based‐definition. Accessed October 21 2017. 10.1016/j.pneurobio.2013.01.003 10.1186/1472-6963-8-95 10.1371/journal.pone.0050792 10.1186/s13195-017-0261-y 10.2217/nmt.13.25 10.1093/geronb/gbx100 Committee on Preventing Dementia and Cognitive Impairment, Board on Health Sciences Policy, Health and Medicine Division, and E, 2017, National Academies of Sciences and Medicine, Preventing Cognitive Decline and Dementia: A Way Forward Zhong Y., 2017, The Potential Value of β‐Amyloid Imaging for the Diagnosis and Management of Dementia: A Survey of Clinicians, Alzheimer Dis Assoc Disord, 31, 27, 10.1097/WAD.0000000000000168 10.1093/geront/46.6.791 10.1001/jamaneurol.2017.2954 Milne R., 2017, At, with and beyond risk: expectations of living with the possibility of future dementia, Sociol Health Illn 10.1016/j.jalz.2015.09.005 10.1016/j.jalz.2017.01.022 10.1002/gps.552 10.1186/s13195-017-0312-4 Kunneman M., 2017, Patients' and caregivers' views on conversations and shared decision making in diagnostic testing for Alzheimer's disease: The ABIDE project, Alzheimers Dement (N Y), 10, 314, 10.1016/j.trci.2017.04.002 10.1016/j.trci.2017.03.008 10.1093/geronb/56.4.P244 10.1177/109019810002700506 10.1037/14297-012 10.1007/s00127-009-0113-6 10.1159/000321667 Kubiak S.P., 2011, Stigmatizing clients with mental health conditions: an assessment of social work student attitudes, Soc Work Ment Health, 9, 253, 10.1080/15332985.2010.540516 10.1093/oxfordjournals.schbul.a006865 10.1002/(SICI)1520-6629(200001)28:1<91::AID-JCOP9>3.0.CO;2-M 10.1007/s12529-012-9243-4 10.2307/2676360 10.1097/MRR.0b013e32829fb3db Stuart H., 2005, The Inventory of Stigmatizing Experiences: its development and reliability, World Psychiatry, 4, 33 10.1007/s11136-009-9475-1 10.1097/JGP.0b013e3181ad4f3c 10.1146/annurev-genom-090711-163800 Genetic Information Nondiscrimination Act of 2008. National Human Genome Research Institute (NHGRI) Available at:https://www.genome.gov/24519851/Genetic‐Information‐Nondiscrimination‐Act‐of‐2008. Accessed July 21 2017. 2014, Predicting Alzheimer's: The Social and Policy Implications of Early Diagnosis. Stanford Journal of Public Health 10.1377/hlthaff.24.2.483 Arias J.J., 2014, Confidentiality in preclinical Alzheimer disease studies When research and medical records meet, Neurology, 82, 725, 10.1212/WNL.0000000000000153 Alzheimer Europe 2016: Ethical issues linked to the changing definitions/use of the term Alzheimer's disease 2016. Available at:http://www.alzheimer‐europe.org/Ethics/Ethical‐issues‐in‐practice/2016‐Ethical‐issues‐linked‐to‐the‐changing‐definitions‐use‐of‐terms‐related‐to‐Alzheimer‐s‐disease/(language)/eng‐GB. Accessed September 6 2017. Lu Y., 2012, Correlation between insight and internalized stigma in patients with schizophrenia, Shanghai Arch Psychiatry, 24, 91