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2016: Ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease

World Alzheimer Report (2010).The Global Economic Impact of Dementia. Alzheimer’s Disease International

Albert MS et al. (2011). "The diagnosis of mild cognitive impairment due to Alzheimer's disease: Recommendations from the National Institute on Aging – Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease."Alzh & Dem: The J of the Alzh Assoc,7, 3: 270 – 279

Alzheimer Europe (2013).The ethical issues linked to the perceptions and portrayal of dementia and people with dementia. Alzheimer Europe

Alzheimer Europe (2016). European Working Group of People with Dementia – EWGPWD, Available:

Alzheimer’s Society (2004).Drugs for the treatment of Alzheimer's disease; summary of the Alzheimer’s Society’s submission to the National Institute for Clinical Excellence, Alzheimer’s Society, London

Alzheimer's Society (2006).Ready or not: A survey of services available in the UK for younger people with dementia,Alzheimer's Society, London

Alzheimer's Society (2007).Dementia UK: A report into the prevalence and cost of dementia. Prepared by the Personal Social Service Research Unit at the London School of Economics and the Institute of Psychiatry at Kings College London for the Alzheimer's Society, London

Appelbaum PS, Roth LH & Lidz C (1982). The therapeutic misconception: Informed consent in psychiatric research.Int J Law Psychiatry,5: 319–329

(APPG) All Party Parliamentary Group on Dementia (2013).Dementia Does Not Discriminate. Alzheimer’s Society, London.

Ballenger JF (2006a).Self, senility, and Alzheimer’s disease in modern America: a history. The John Hopkins University Press: Baltimore

Ballenger JF (2006b). The biomedical deconstruction of senility and the persistent stigmatisation of old age in the United States. In: Leibing, Annette, and Lawrence Cohen, eds.Thinking about dementia: Culture, loss, and the anthropology of senility. Rutgers University Press, 106-120

Bamford S-M, Holley-Moore G & Watson J (eds.)(2014).A Compendium of Essays:New Perspectives and Approaches to Understanding Dementia and Stigma. London: The International Longevity Centre-UK. Available:

Bartlett R and O’Connor D (2010).Broadening the dementia debate: towards social citizenship. The Policy Press: Bristol

Beauchamp TL & Childress JF (2001).Principles of biomedical ethics, 5th Edition. Oxford University Press

Beach TG, Monsell SE, Phillips LE & Kukull W (2012). Accuracy of the Clinical Diagnosis of Alzheimer Disease at National Institute on Aging Alzheimer's Disease Centers, 2005–2010.J Neuropathol Exp Neurol.Apr;71, 4: 266–273.

Beard RL & Fox PH (2008). Resisting social disenfranchisement: Negotiating collective identities and everyday life with memory loss.Soc Sci & Med,66, 7: 1509-1520

Bond J (1992). The medicalization of dementia.J of Aging Stud,6, 4: 397-403

Brayne C (2012). A rallying call for an evidence based approach to dementia and related policy development.BMJ,345: e8588

Clare L (2003). Managing threats to self: awareness in early stage Alzheimer's disease.Soc Sci and Med,57: 1017-1029.

Cody M, Beck C, Shue VM & Pope S (2002). Reported practices of primary care physicians in the diagnosis andmanagement of dementia.Aging and Ment Health,6:72–76

Corner L & Bond J (2004). Being at risk of dementia: Fears and anxieties of older adults.J of Aging Stud,18:143–155

Corner L & Bond J (2006). The impact of the label of mild cognitive impairment on the individual’s sense of self.Philos, Psychiat & Psychol,13:3-12

Council of Europe (1953).European Convention on Human Rights. Accessed online on 16 June 2016 at:

Covinsky K (2011). The (Ir)relevance of medical research to older patients. GeriPal (A geriatrics and palliative care blog). Accessed online on 17 October 2011 at:

de Boer M, Hertogh C, Dröes R, Riphagen I, Jonker C & Eefsting J (2007). Suffering from dementia – the patient’s perspective.Int Psychogeriatr,19, 6: 1021-1039

DEEP (2014).Dementia words matter. Guidelines on language about dementia. DEEP

Dhedhi SA, Swinglehurst D & Russell J (2014). ‘Timely’ diagnosis of dementia: what does it mean? A narrative analysis of GPs’ accounts.BMJ Open,4:e004439. doi:10.1136/bmjopen-2013-004439: 1-9

Downs M, Libbens RC, Rae C, Cook A, & Woods R (2002). What do general practitioners tell people with dementiaand their families about the condition? A survey of experiencesin Scotland. Dementia:The Int J of Soc Res and Practice,1:47–58

Draper B, Peisaha C, Snowdon J & Brodaty H (2010). Early dementia diagnosis and the risk of suicide and euthanasia.Alz & Dem,6:75-82

DuBois JM (2008).Ethics in Mental Health Research: principles, guidance and cases. Oxford University Press

Dubois B, Feldman HH, Jacova C, Dekosky ST, Barberger-Gateau P, Cummings J, Delacourte A, Galasko D, Gauthier S, Jicha G, Meguro K, O'brien J, Pasquier F, Robert P, Rossor M, Salloway S, Stern Y, Visser PJ, Scheltens P (2007). Research criteria for the diagnosis of Alzheimer's disease: revising the NINCDS-ADRDA criteria.The Lancet Neurology,Aug;6, 8: 734-746

Dubois B, Feldman H, Jacova C, Cummings J et al. (2010). Revising the definition of Alzheimer’s disease: a new lexicon.The Lancet Neurology,9, October: 1118–1127

Dubois B et al. (2014). Advancing research diagnostic criteria for Alzheimer's disease: the IWG-2 criteria.The Lancet Neurology,13, 6: 614-629

Dubois B, Padovani A, Scheltens P, Rossi A & Dell’Agnello G (2016). Timely diagnosis for Alzheimer’s disease: a literature review on benefits and challenges.J of Alz,49: 617-631

Dubois B et al. (2016). Preclinical Alzheimer's disease: Definition, natural history, and diagnostic criteria.Alz & Dem,12, 3: 292-323.

Erikson E (1997).The Life Cycle Completed. Extended Version with New Chapters on the Ninth Stage of Development by Joan M. Erikson. New York: W.W. Norton & Company

Fulford KWM (1989).Moral Theory and Medical Practice.  Cambridge: Cambridge University Press.

Giaccone G, Arzberge T, Alafuzoff I et al. (2011). New lexicon and criteria for the diagnosis of Alzheimer’s disease.The Lancet Neurology,10, 4: 298-299

Goffman E (1963).Stigma: Notes on the management of spoiled identity. Penguin Books

Haase T (2005).Early Onset Dementia: The Needs of Younger People with Dementia in Ireland, Alzheimer Society of Ireland, Dublin.

Harris P B & Keady J (2009). Selfhood in younger onset dementia: Transitions and testimonies.Aging and Ment Health, 13, 3: 437-444

Hughes J (2001). View of the person with dementia.Journal of Medical Ethics,27, 2: 86-91

Jack Jr. et al. (2011). "Introduction to the recommendations from the National Institute on Aging – Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease."Alzheimer's & Dementia: The J of the Alz Assoc,7, 3: 257 – 262

Jessen et al. (2014). A conceptual framework for research on subjective cognitive decline in preclinical Alzheimer’s disease.Alz & Dem,10:844–852

Johannessen A & Möller A (2011). Experiences of persons with early-onset dementia in everyday life: A qualitative study.Dementia,12, 4: 410-424

Jones, E. E., Farina, A., Hastorf, A. H., Markus, H., Miller, D. T., & Scott, R. A. (1984). Social stigma: the psychology of marked relationships. WH Freeman and Company.

Karlawish J (2011). Addressing the ethical, policy, and social challenges of preclinical Alzheimer disease.Neurology77, 15: 1487-1493

Kekki T & Mankkinen T (2016).Kansalaisturvallisuuden tila Suomessa – tutkimuksen tuloksia[The Citizens’ Security in Finland, in Finnish]. Helsinki: The Finnish National Rescue Association

Kendell R (2001). The distinction between mental and physical illness.The Brit J of Psychol,178, 6: 490-493

Kitwood T (1990). The dialectics of dementia: with particular refernece to Alzheimer’s disease. Ageing and Soc,10, 2: 177-196

Kitwood T (1997).Dementia Reconsidered: The Person Comes First.Buckingham: Open University Press

Koch T & Iliffe S (2010). Rapid Appraisal of Barriers to the Diagnosis and Management of Patients with Dementia in Primary Care: A Systematic Review.BMC Fam Pract.11:54

Leibing A (2015). Dementia in the making. Early detection and the body/brain in Alzheimer’s disease. In: Swinnen A/Schweda M (eds.)Popularizing Dementia: Public Expressions and Representations of Forgetfulness, Bielefeld: 275-294

Lindeman Nelson (2001).Damaged identities, narrative repair. Cornell University Press

Link BG & Phelan JC (2001). Conceptualizing stigma.Annual Rev of Sociol,27: 363-385

Link BG & Phelan JC (2006). Stigma and its public health implications.The Lancet,367: 528-529

MacRae H (1999). Managing courtesy stigma: the case for Alzheimer's disease.Sociol of Health and Illness,21, 1: 54-70

Marzanski M (2000). On telling the truth to patients with dementia.West J Med.173, 5: 318-322

McKhann G, Drachman D, Folstein M, Katzman R, Price D & Stadlan EM (1984). Clinical diagnosis of Alzheimer's disease: report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease.Neurology,34, 7:  939-944

McKhann GM et al. (2011). "The diagnosis of dementia due to Alzheimer's disease: Recommendations from the National Institute on Aging – Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease."Alzs & Dem: The J of the Alz Assoc7, 3: 263 – 269

McManus C, Stubbings G & Martin N (2006). Stigmatisation, physical illness and mental health in Primary Ciliary Dyskinesia.J of Health Psychol,11, 3: 467-482

Molinuevo JL & Rami L (2013). Applying the IWG research criteria in clinical practice: feasibility and ethical issues.Med Clin North Am.97, 3: 477-84

Molinuevo JL, Cami J, Carné MC, Georges J, Isaac MB, et al. (2016). Ethical challenges in preclinical Alzheimer’s disease observational studies and trials: Results of the Barcelona summit.Alz & Dementia,12: 614-622

Moro, V., Condoleo, M. T., Sala, F., Pernigo, S., Moretto, G., & Gambina, G. (2012). Cognitive Stimulation in a-MCI An Experimental Study. Amer J of Alz Dis and other Dem, 27,2: 121-130

Morris ZS, Wooding S & Grant J (2011). The answer is 17 years, what is the question: understanding time lags in translational research.J of the Royal Soc of Med104, 2: 510-520

Hyman BT & Trojanowski JQ (1997). Consensus recommendations for the postmortem diagnosis of Alzheimer disease from the National Institute on Aging and the Reagan Institute Working Group on diagnostic criteria for the neuropathological assessment of Alzheimer disease.J Neuropathol Exp Neurol.56: 1095–7

NICE and SCIE (2006).Dementia: Supporting People with Dementia and their Carers in Health and Social Care. NICE clinical guideline 42

Nolan, L., McCarron, M., McCallion, P., Murphy-Lawless, J. (2006).Perceptions of stigma in dementia: an exploratory study. Trinity College Dublin and The Alzheimer Society of Ireland.

Nordenfelt LY (1987, 1995).On the nature of health: An action-theoretic approach. Dordrecht.

Nuffield Council on Bioethics (2009).Dementia: Ethical Issues. London Nuffiled Council on Bioethics.

Nuffield Council on Bioethics  (2015).The collection, linking and use of data in biomedical research and health care: ethical issues. Nuffield Council on Bioethics

Nussbaum M (2011).Creating Capabilities: The Human Development Approach. Belknap Press.

Palmer K, Musicci M & Calragirone C (2010). Are guidelines needed for the diagnosis and management of incipient Alzheimer's disease and mild cognitive impairment?Int J of Alz Dis, Aug, 17; pii: 41761

Parsons T (1951).The social system. Glencoe

Peel E (2014). The living death of Alzheimer’s versus ‘Take a walk to keep dementia at bay’: representations of dementia in print media and carer discourse.J of Sociol and of Health and Illness,36, 6: 885 – 901

Petersen RC, Doody R, Kurz A, Mohs RC, Morris JC, Rabins PV, Ritchie K, Rossor M, Thal L & Winblad B (2001). Current concepts in mild cognitive impairment.Arch Neurol,58: 1985–1992

Petersen RC (2004). Mild cognitive impairment as a diagnostic entity.J of Int Med,256,3: 183-194

Petersen RC, Caracciolo B, Brayne C, Gauthier S, Jelic V & Fratiglioni L (2014). Mild cognitive impairment: a concept in evolution.J Intern Med,275: 214-228

PredictND (2016). PredictND Fact sheet. Accessed online on 3 October 2016 at:

Quinn DM, Williams MK and Weisz BM (2015). From Discrimination to Internalized Mental Illness Stigma: The Mediating Roles of Anticipated Discrimination and Anticipated Stigma,Psychiatr Rehabil J.38, 2: 103–108

Redley M, Hughes JC & Holland A (2010). Voting and mental capacity.BMJ,341, 466-467

Sabat SR (2001). The Experience of Alzheimer’s Disease: Life Through a Tangled Veil. Oxford: Blackwell.

Schicktanz S, Schweda M, Ballenger JF, Fox PJ, Halpern J, Kramer JH, Micco G, Post SG,  Thompson C, Knight RT & Jagst WJ (2014). Before It Is Too Late: Professional Responsibilities in Late-onset Alzheimer’s Research and Pre-symptomatic Prediction.Frontiers in Human Neuroscience,8, 921: 1-6

Scottish Government (2013). Scotland’s National Dementia Strategy 2013-16, Accessed online on 15 August at:

Singletary SL,   Ruggs   EN, Hebl   MR & Davies PG (2009).Literature Overview: Stereotype Threat: Causes, Effects, and Remedies.  SWE-AWE CASEE Overviews. Accessed online on 3 October 2016 at:     

Smith R (2015). After Dad's diagnosis I was determined to come out with the disease.Irish Examiner, 25 June: 10-11

Sperling RA et al. (2011). "Toward defining the preclinical stages of Alzheimer's disease: Recommendations from the National Institute on Aging – Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease."Alz & Dem: The J of the Alz Ass,7, 3: 280 – 292

Stangor, C., & Crandall, C. S. (2003). Threat and the social construction of stigma. In T. F. Heatherton, R. E. Kleck, M. R. Hebl, & J. G. Hull, The Social Psychology of Stigma (pp. 62-87). The Guilford Press.

Steele CM (1997). A threat in the air: How stereotypes shape intellectual identity and performance.Amer Psychol,52, 613–629

Steeman E, de Casterlé B, Godderis J & Grypdonck M (2006). Living with early-stage dementia: a review of qualitative studies.J of Adv Nurs,54, 6: 722-738

Steeman E, Godderis J, Grypdonck M, De Bal N & Dierckx de Casterlé B (2007). Living with dementia from the perspective of older people: is it a positive story?Aging and Ment Health,11, 2: 119-130

United Nations (2006).Convention on the Rights of Persons with Disabilities. Accessed online on 16 June 2016 at:

Van Gorp B, Vercruysse T & Van den Bulck (2012). Toward a more nuanced perception of Alzheimer’s disease: designing and testing a campaign advertisement.Am J Alz Dis & Oth Dem,26, 7: 388-96

Van Hout H, Vernooij-Dassen M, Poels P, Hoefnagels W & Grol R. (2000). Are general practitioners able to accurately diagnose dementia and identify Alzheimer's disease? A comparison with an outpatient memory clinic.Br J Gen Pract.50, 453: 311-312

Vernooij-Dassen MJ1, Moniz-Cook ED, Woods RT, De Lepeleire J, Leuschner A, Zanetti O, de Rotrou J, Kenny G, Franco M, Peters V & Iliffe S (2005). Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma.Int J Geriatr Psychiatr,20, 4: 377-386

Visser PJ, et al. (2012). Comparison of International Working Group criteria and National Institute on Aging–Alzheimer’s Association criteria for Alzheimer’s disease.Alzheimer's & Dementia,8, 6: 560-563

Weiner B, Perry RP & Magnusson J (1988). An attributional analysis of reactions to stigmas.J of Person and Soc Psychol,55, 5: 738-748

Werner P (2005). Social distance towards a person with Alzheimer's disease.Int J of Geriatr Psychiatr,20: 182-188

Werner P, Goldstein D & Buchbinder E (2010). Subjective experience of family stigma as reported by children of Alzheimer’s disease patients. Qual Health Res,
20, 2: 159-169

WHO (2015).World Report on Ageing and Health. Geneva: World Health Organization

Winblad et al. (2016). Defeating Alzheimer’s disease and other dementias: a priority for European science and society.The Lancet Neurology,15, 5: 455-532

Woods RT, Esme Moniz-Cook E, Iliffe S, Campion P, Vernooij-Dassen M, Zanetti O, Franco M (2003). Dementia: issues in early recognition and intervention in primary care.J Royal Soc Med,96, 7:  320-324

Woods B, Aguirre E, Spector AE, Orrell M. (2012) Cognitive stimulation to improve cognitive functioning in people with dementia.Cochrane Database of Systematic Reviews, 2: CD005562.

YoungDementia UK 2016. Guide for journalists.

Zinck A (2008). Self-referential emotions.Consciousness and Cognition,17, 2: 496-505



Last Updated: Friday 10 February 2017


  • Acknowledgements

    The discussion paper on ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of this publication represents the views of the author only and is his/her sole responsibility. It cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.
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