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Situated Prevention: Framing the “New Dementia”

Published online by Cambridge University Press:  01 January 2021

Abstract

This article is about the recent and profound changes in the conceptualization of dementia, especially the turn towards prevention. The main argument is that more attention needs to be paid to “situated prevention” — the framing of internationally circulating data on the “new dementia” in different contexts. After introducing some of the more problematic issues related to the “new dementia,” a first comparison of major preventive clinical trials in Europe and in North America will be provided. The major insight stemming from situating the global message of preventing dementia is recognition of the responsibility researchers and policy makers bear with respect to the implicit and potential moral narratives in emerging scientific landscapes.

Type
Symposium 2 Articles
Copyright
Copyright © American Society of Law, Medicine and Ethics 2018

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References

McGowin, D. F., Living in the Labyrinth: A Personal Journey through the Maze of Alzheimer's Disease (New York: Delacorte Press, 1993).Google Scholar
Reisberg, B., A Guide to Alzheimer's Disease (New York: The Free Press, 1981); Gubrium, J., Oldtimers and Alzheimer's: The Descriptive Organization of Senility (Greenwich: Jai Press, 1986). Note: In the following I will use “dementia” and “Alzheimer's disease” (AD) interchangeably (employing the common, more colloquial use of the terms), although, in reality, a distinction needs to be made: it should be stated that AD is a syndrome, the most common form of a dementia and, since the 1980s, has meant the early and late onset form. The term was coined in 1910 by Kraepelin who, at that time, was referring to the early-onset, pre-senile form of the disease (see Ballenger, J., Self, Senility and Alzheimer's Disease in Modern America: A History [Johns Hopkins University Press, 2006]).Google Scholar
Adelman, R. C., “The Alzheimerization of Aging,” Gerontolo-gist 35, no. 4 (1995): 526-532; Adelman, R. C., “The Alzheimerization of Aging: A Brief Update,” Experimental Gerontology 33, nos. 1-2 (1998): 155-157.Google Scholar
Beard, R. L., Living with Alzheimer's: Managing Memory Loss, Identity, and Illness (New York: New York University Press, 2016).Google Scholar
Another major shift in the understanding of the dementia syndrome preceded the two changes here described as part of the “new dementia”: a widening of the category once exclusively steeped in a cognitive paradigm, which now integrated once-peripherical behavioral symptoms into the main syndrome. See Leibing, A., “From the Periphery to the Center: Treating Noncognitive, Especially Behavioral and Psychological, Symptoms of Dementia,” in Ballenger, J., White-house, P., Lyketsos, C., Rabins, P., and Karlawish, J., eds., Treating Dementia: Do We Have a Pill for That? (Baltimore: The Johns Hopkins University Press, 2009): 74-97.Google Scholar
Peters, R., “The Prevention of Dementia,” International Journal of Geriatric Psychiatry 24, no. 5 (2009): 452458.Google Scholar
Taragano, F. E., Allegri, R. F., Krupitzki, H., Sarasola, D., Serrano, C. M., and Lyketsos, C., “Mild Behavioral Impairment and Risk of Dementia,” Neurology 70 (2008): A282.Google Scholar
See, e.g., Kral, V. A., “Senescent Forgetfulness: Benign and Malignant,” Canadian Medical Association Journal 86 (1962): 257-260; see Golomb, J., Kluger, A., and Ferris, S. H., “Mild Cognitive Impairment: Historical Development and Summary of Research,” Dialogues in Clinical Neuroscience 6, no. 4 (2004): 351-367.Google Scholar
See Ballenger, J., Self, Senility and Alzheimer's Disease in Modern America: A History (Johns Hopkins University Press, 2006); Leibing, A., “Narrowing Worlds: On Biography and Alzheimer's Disease in Brazil,” in Leibing, A., ed., The Medical Anthropologies in Brazil (Berlin: VWB-Verlag, 1997): 221-242.Google Scholar
Vidal, F., “Brainhood, Anthropological Figure of Modernity,” History of the Human Sciences 22, no. 1 (2009): 5-36; Williams, S. J., Katz, S., and Martin, P., “Neuroscience and Medicalisation: Sociological Reflections on Memory, Medicine and the Brain,” in Pickersgill, M. and van Keulen, I., eds., Sociological Reflections on the Neurosciences (Emerald Group Publishing Limited, 2011): at 231-254.Google Scholar
ASC (Alzheimer Society Canada), “Making the Case for Dementia Prevention,” 2017, available at <http://www.alzheimer.ca/en/Home/Research/Alzheimer-Society-Research-Program/past-ASRP-recipients/Researcher-profiles/Barry-Greenberg> (last visited November 2017).+(last+visited+November+2017).>Google Scholar
Alzheimer's Association, “2009 Alzheimer's Disease Facts and Figures,” Alzheimer's & Dementia 5, no. 3 (2009): 234-270.Google Scholar
Whitehouse, P., “The Diagnosis and Treatment of Alzheimer's: Are We Being Irresponsible?” in Boenink, M., van Lente, H., and Moors, E., eds., Emerging Technologies for Diagnosing Alzheimer's Disease, Innovating with Care (Palgrave Macmillan, 2016): at 21-39; Lock, M., “Detecting Amyloid Biomarkers: Embodied Risk and Alzheimer Prevention,” Biosocieties 8, no. 2 (2013): 107-123; see Leibing, supra note 5; Leibing, A., “The Earlier the Better: Alzheimer's Prevention, Early Detection, and the Quest for Pharmacological Interventions,” Culture, Medicine & Psychiatry 38, no. 2 (2014): 217-236.Google Scholar
Roland, D., “Big Pharma Backs New $100m Dementia Venture Fund,” The Telegraph, March 17, 2015, available at <http://www.telegraph.co.uk/finance/newsbysector/pharmaceuticalsandchemicals/11477304/Big-Pharma-backs-new-100m-dementia-venture-fund.html> (last visited August 7, 2018).+(last+visited+August+7,+2018).>Google Scholar
See Leibing, supra note 13; Leibing, A., “Tense Prescriptions? Alzheimer Medications and the Anthropology of Uncertainty,” Transcultural Psychiatry 46, no. 1 (2009): 180-206; Leibing, supra note 13; Leibing, A., “Dementia in the Making: Early Detection and the Body/Brain in Alzheimer's Disease,” in Swinnen, A. M. and Schweda, , eds., Popularizing Dementia, Public Expressions and Representations of Forgetfulness (Bielefeld: Transkript, 2015): at 275-294; Leibing, A., “On Short Cuts: The Complexity of Studying the Early Diagnosis and Prevention of Alzheimer's Disease,” in Boening, M., van Lente, H., and Moors, E., eds., Emerging Technologies for Diagnosing Alzheimer's Disease: Innovating with Care (Palgrave, 2016): 41-62.Google Scholar
Khachaturian, Z. S. and Khachaturian, A. S., “The Paradox of Research on Dementia-Alzheimer's Disease,” Journal of Prevention of Alzheimer's Disease 3, no. 4 (2016): 189-191.Google Scholar
Richards, M. and Brayne, C., “What Do We Mean by Alzheimer's Disease?” BMJ 341 (2010): at 865.Google Scholar
Molin, P. and Rockwood, K., “The New Criteria for Alzheimer's Disease: Implications for Geriatricians,” Canadian Geriatrics Journal 19, no. 2 (2016): 66-73, at 70.Google Scholar
Alzheimer, A., “Über eine eigenartige Erkrankung der Hirnrinde,” Allg Zschr Psychiatr Psych Gerichtl Med 64 (1907): 146-148.Google Scholar
Strobel, G., “After Solanezumab: Where Should Alzheimer's Research Go?” Alzforum, January 31, 2017, available at <https://www.alzforum.org/news/conference-coverage/after-solanezumab-where-should-alzheimers-research-go> (last visited August 7, 2018). This does not mean that ß amyloid-based medications have been abandoned. In a recent article with the title “Anti-amyloid drug pipeline shows no sign of drying up” (see Rogers, M. B., “Anti-amyloid Drug Pipeline Shows No Sign of Drying Up,” Alzforum, available at <http://www.alzforum.org/news/conference-coverage/anti-amyloid-drug-pipeline-shows-no-sign-drying> (last visited August 7, 2018), one researcher explained that many other mechanisms interact with amyloid processes: “Instead of a linear amyloid cascade, it's more of a swirling eddy.” It is too early to see whether this more holistic view will later on be part of conceptualizing new classes of drugs and how the multiple factors will be translated into marketing and public health campaigns.+(last+visited+August+7,+2018).+This+does+not+mean+that+ß+amyloid-based+medications+have+been+abandoned.+In+a+recent+article+with+the+title+“Anti-amyloid+drug+pipeline+shows+no+sign+of+drying+up”+(see+Rogers,+M.+B.,+“Anti-amyloid+Drug+Pipeline+Shows+No+Sign+of+Drying+Up,”+Alzforum,+available+at++(last+visited+August+7,+2018),+one+researcher+explained+that+many+other+mechanisms+interact+with+amyloid+processes:+“Instead+of+a+linear+amyloid+cascade,+it's+more+of+a+swirling+eddy.”+It+is+too+early+to+see+whether+this+more+holistic+view+will+later+on+be+part+of+conceptualizing+new+classes+of+drugs+and+how+the+multiple+factors+will+be+translated+into+marketing+and+public+health+campaigns.>Google Scholar
Livingston, G. et al., “Dementia Prevention, Intervention, and Care,” The Lancet 390, no. 10113 (2017): 2673-7234.CrossRefGoogle Scholar
Kane, R. L., “Interventions to Prevent Age-Related Cognitive Decline, Mild Cognitive Impairment, and Clinical Alzheimer's-Type Dementia,” AHRQ Publication no. 17-EHC008-EF (2017); Anstey, K. and Peters, R., “Oversimplification of Dementia Risk Reduction Messaging Is a Threat to Knowledge Translation in Dementia Prevention Research,” Journal of Prevention of Alzheimer's Disease 5, no. 1 (2018): 2-4.Google Scholar
Sperling, R. A. et al., “Toward Defining the Preclinical Stages of Alzheimer's Disease,” Alzheimer's & Dementia 7, no. 3 (2011): 280-292, at 282.Google Scholar
See, e.g., Attems, J. and Jellinger, K. A., “The Overlap between Vascular Disease and Alzheimer's Disease: Lessons from Pathology,” BMC Medicine 12 (2014): 206; see also author Leibing (2014), supra note 13; Leibing (2015, 2016), supra note 13; but see Anstey and Peters, supra note 22.Google Scholar
See Leibing, supra note 13.Google Scholar
For a more detailed analysis, see Petersen, A. and Lupton, D., The New Public Health: Health and Self in the Age of Risk (London: Sage, 1997); Bell, K., McNaughton, D., and Salmon, A., eds., Alcohol, Tobacco and Obesity: Morality, Mortality and the New Public Health (London: Routledge, 2011); Alvarez, S., Prévention et vieillissement: l'expérience individuelle du vieillissement face à la norme contemporaine du ”bien vieillir,” Ph.D. thesis in Sociologie, Université de Grenoble, France, 2014; Shim, J. K., Heart-Sick: The Politics of Risk, Inequality, and Heart Disease (New York: New York University Press, 2014); among others.Google Scholar
Clarke, A. E. et al., “Biomedicalization: Technoscientific Transformations of Health, Illness and U.S. Biomedicine,” American Sociological Review 68, no. 2, (2003): 161-194.Google Scholar
See Petersen and Lupton, supra note 26; Bell, McNaughton and Salmon, supra note 26, at 201; Bell, K. and Green, J., “On the Perils of Invoking Neoliberalism in Public Health Critique,” Critical Public Health 26, no. 3 (2016): 239-243; see also Leibing, A. and Kampf, A., “Neither Body nor Brain: Comparing Attitudes to Prostate Cancer and Alzheimer's Disease,” Body & Society 19, no. 4 (2013): 61-91, at 65ff.Google Scholar
See, e.g., Foucault, M., “Technologies of the Self,” in Martin, L. H., Gutman, H., and Hutton, P. H., eds., Technologies of the Self: A Seminar with Michel Foucault (Amherst, MA: The University of Massachusetts Press, 1988): 16-49; Cruikshank, B., “Revolutions Within: Self-Government and Self-Esteem,” in Barry, A., Osborne, T., and Rose, N., eds., Foucault and Political Reason: Liberalism, Neo-Liberalism, and Rationalities of Government (Chicago, IL: University of Chicago Press, 1996); Petersen, A., “Risk, Governance and the New Public Health,” in Petersen, A. and Bunton, R., eds., Foucault, Health and Medicine (London/New York: Routledge, 1998): 189-206; Hache, E. (2007) “La responsabilité, une technique de gouvernementalité néolibérale?” Raisons politiques 4, no. 28 (2007): 49-65.Google Scholar
See Bell and Green, supra note 28; Ridde, V., “Reducing Social Inequalities in Health: Public Health, Community Health or Health Promotion?” Health Promotion and Education 14, no. 2 (2007): 63-67, 111-114.Google Scholar
Mayes, C., The Biopolitics of Lifestyle: Foucault, Ethics and Healthy Choices (London/New York, Routledge, 2016): at 4.Google Scholar
Aronowitz, R. A., “The Converged Experience of Risk and Disease,” Milbank Quarterly 87 (2009): 417442; also Kreiner, M. J. and Hunt, L. M., “The Pursuit of Preventive Care for Chronic Illness: Turning Healthy People into Chronic Patients,” Sociology of Health and Illness 36, no. 6 (2013): 870-884.Google Scholar
See, e.g., Mayes, supra note 31.Google Scholar
Katz, S., “Active and Successful Aging: Lifestyle as a Geronto-logical Idea,” Recherches sociologiques et anthropologiques 44, no. 1 (2013): 33-49.CrossRefGoogle Scholar
See, e.g., Lamb, S., ed., Successful Aging? Global Perspectives on a Contemporary Obsession (London: Rutgers University Press, 2017).Google Scholar
See Katz, supra note 34, at 44.Google Scholar
Chandler, D. and Munday, R., Oxford Dictionary of Media and Communication, Oxford University Press, 2011, available at <http://www.oxfordreference.com/view/10.1093/acref/9780199568758.001.0001/acref-9780199568758-e-2501> (last visited August 7, 2018).CrossRefGoogle Scholar
Haraway, D., “Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective,” Feminist Studies 14, no. 3 (1988): 575-599.CrossRefGoogle Scholar
Knorr-Cetina, K., Epistemic Cultures, How the Sciences Make Knowledge (Cambridge, MA: Harvard University Press, 1999).Google Scholar
See, for example, Leibing, A., “The Earlier the Better: Alzheimer's Prevention, Early Detection, and the Quest for Pharmacological Interventions,” Culture, Medicine & Psychiatry 38, no. 2 (2014): 217-236. Leibing, A., “From the Periphery to the Center: Treating Noncognitive, Especially Behavioral and Psychological, Symptoms of Dementia,” in Ballenger, J., Whitehouse, P., Lyketsos, C., Rabins, P., and Karlawish, J., eds., Treating Dementia: Do We Have a Pill for That? (Baltimore: The Johns Hopkins University Press, 2009): 74-97.Google Scholar
See Alzheimer Europe, “Five-Country Alzheimer's Disease Survey,” 2018, available at <http://www.alzheimer-europe.org/Research/Value-of-Knowing> (last visited January 2018).+(last+visited+January+2018).>Google Scholar
Hsie, H. F. and Shannon, S. E., “Three Approaches to Qualitative Content Analysis,” Qualitative Health Research 15, no. 9 (2005): 1277-1288.Google Scholar
See Alzheimer Europe, supra note 41.Google Scholar
Alzheimer's Association, 2016 Alzheimer's Disease Facts and Figures, available at <http://www.alz.org/documents_custom/2016-facts-and-figures.pdf> (last visited December 2016).+(last+visited+December+2016).>Google Scholar
It is possible that parts of the Canadian research community are more critical regarding the ‘new dementia’ when compared with U.S. American tendencies: “The 4th Canadian Consensus Conference on the Diagnosis and Treatment of Dementia (CCCDTD4) recommended that the criteria for MCI due to AD be used cautiously and only in specialized clinical practice. Specifically, the CCCDTD4 considered it premature to refer to brain amyloidosis as an asymptomatic state of AD and rejected the label “preclinical AD” as proposed by the NIA-AA. Moreover, ethical and financial impact of its use would be considerable. IWG's definition of “asymptomatic at risk” has been endorsed only for research purposes” (Molin and Rockwood, 2016):67.Google Scholar
PREVENT Dementia Study, “Welcome to the PREVENT Dementia Study,” (n.d.), available at <http://preventdementia.co.uk/> (last visited August 7, 2018).+(last+visited+August+7,+2018).>Google Scholar
See Anstey and Peters, supra note 22.Google Scholar
The Alzheimer's Association explains the heart-head connectionon their website, suggesting additionally an explanation of why some people show no symptoms of dementia, even when after autopsy they were found to have the typical biomarkers, neurofibrillary plaques and amyloid tangles in their brain (and vice versa — dementia, but no biomarkers), an apparent contradiction that has been used by a number of critical social scientists in order to deconstruct dominant dementia models: “Several conditions known to increase the risk of cardiovascular disease — such as high blood pressure, diabetes and high cholesterol — also increase the risk of developing Alzheimer's. Some autopsy studies show that as many as 80 percent of individuals with Alzheimer's disease also have cardiovascular disease. (…) Some autopsy studies suggest that plaques and tangles may be present in the brain without causing symptoms of cognitive decline unless the brain also shows evidence of vascular disease” (see <http://www.alz.org/research/science/alzheimers_prevention_and_risk.asp> [last visited August 7, 2018]).+[last+visited+August+7,+2018]).>Google Scholar
See Baker, M., “In Biomarkers We Trust?” Nature Biotechnology 23, no. 3 (2005): 297-304; Metzler, I., “Biomarkers and Their Consequences for the Biomedical Profession: A Social Science Perspective,” Future Medicine 7, no. 4 (2010): 407-420.CrossRefGoogle Scholar
After Metzler (id.).Google Scholar
See Baker, supra note 50.Google Scholar
See, e.g., Applbaum, K., “Is Marketing the Enemy of Pharmaceutical Innovation?” Hastings Center Report 39, no. 4 (2009): 13-17; Sismondo, S., “Pharmaceutical Company Funding and Its Consequences: A Qualitative Systematic Review,” Contemporary Clinical Trials 29 (2008): 109-113.Google Scholar
Kollewe, J., “GlaxoSmithKline, $100m UK Fund Launches to Find Cures for Dementia,” The Guardian, October 21, 2015, available at <https://www.theguardian.com/business/2015/oct/21/gsk-launches-global-fund-to-prevent-and-treat-dementia> (last visited August 7, 2018).+(last+visited+August+7,+2018).>Google Scholar
GAP (Global Alzheimer's Platform, (n.d., available at <http://globalalzplatform.org/> (last visited August 7, 2018); see also Cummings, J. et al., “Re-engineering Alzheimer Clinical Trials: Global Alzheimer's Platform Network,” Journal of Prevention of Alzheimer's Disease 3, no. 2 (2016): 114-120.Google Scholar
See Molin and Rockwood, supra note 18, at 66.Google Scholar
Peter Whitehouse, personal information.Google Scholar
Hallin, D. C., “Comparing Mass Media in Europe and the United States,” Insights on Law & Society 5, no. 3 (2005): 1-4.Google Scholar
Greenberg, J. A. and Herzberg, D., “Hidden in Plain Sight Marketing Prescription Drugs to Consumers in the Twentieth Century,” American Journal of Public Health 100, no. 5 (2010): 793-803.Google Scholar
Hunt, L. M., Kreiner, M., and Brody, H., “The Changing Face of Chronic Illness Management in Primary Care: A Qualitative Study of Underlying Influences and Unintended Outcomes,” Annals of Family Medicine 10, no. 5 (2012): 452-460.Google Scholar
Stringhini, S. et al., “Socioeconomic Status and the 25 × 25 Risk Factors as Determinants of Premature Mortality: A Multicohort Study and Meta-analysis of 1·7 Million Men and Women,” The Lancet 389, no. 100075 (2017): 1229-1237.Google Scholar
Manton, K. C., Gu, X. L., and Ukraintseva, S.V., “Declining Prevalence of Dementia in the U.S. Elderly Population,” Advances in Gerontology 16 (2005): 30-37.Google Scholar
Schrijvers, E. M. C., Verhaaren, B. F. J., Kroudstaal, P. J., Hofman, A., Ikram, M. A., and Breteler, M. M. B., “Is Dementia Incidence Declining? Trends in Dementia Incidence Since 1990 in the Rotterdam Study,” Neurology 87, no. 19 (2012): 1456-1463.CrossRefGoogle Scholar
Qiu, C., von Strauss, E., Backman, L., Winblad, B., and Fratiglioni, L., “Twenty-Year Changes in Dementia Occurrence Suggest Decreasing Incidence in Central Stockholm, Sweden,” Neurology 80, no. 20 (2013): 1888-1894.CrossRefGoogle Scholar
Matthews, F. E., Arthur, A., Barnes, L. E., Bond, J., Jagger, C., Robinson, L., and Brayne, C., “A Two-Decade Comparison of Prevalence of Dementia in Individuals Aged 65 Years and Older from Three Geographical Areas of England: Results of the Cognitive Function and Ageing Study I and II,” The Lancet 382, no. 9902 (2013): 1405-1412.CrossRefGoogle Scholar
Hachinski, V. and Sposato, L., “Dementia: From Muddled Diagnoses to Treatable Mechanisms,” Brain 136 (2013): 2652-2656.Google Scholar
Fagan, T., “PreDiva Trial Falls Short,” Alzforum, August 12, 2016, available at <http://www.alzforum.org/news/conference-coverage/prediva-trial-falls-short> (last visited August 7, 2018).+(last+visited+August+7,+2018).>Google Scholar
DuBroff, R. and de Lorgeril, M., “Cholesterol Confusion and Statin Controversy,” World Journal of Cardiology 7, no. 7 (2015): 404409.CrossRefGoogle Scholar
Jo, R. Y. and Jagust, W. J., “Vascular Burden and Alzheimer Disease Pathologic Progression,” Neurology 79 (2012): 1349-1355.Google Scholar
Rose, N., “The Politics of Life Itself,” Theory Culture & Society 18, no. 6 (2001): 1-30.Google Scholar
Nelson, L. and Tabet, N., “Slowing the Progression of Alzheimer's Disease: What Works?” Aging Research Reviews 23 (2015): 193-209.Google Scholar
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