Attitudes towards prediction and early diagnosis of late-onset dementia: a comparison of tested persons and family caregivers

References

• Albert, M. S., DeKosky, S. T., Dickson, D., Dubois, B., Feldman, H. H., Fox, N. C., … Phelps, C. H. (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. Alzheimer's & Dementia, 7(3), 270–279. doi:10.1016/j.jalz.2011.03.008
   PubMed Web of Science ®Google Scholar
• Batsch, N., & Mittelman, M. S. (2012). World Alzheimer Report 2012. Overcoming the Stigma of Dementia. London, UK: Alzheimer’s Disease International.
   Google Scholar
• Beard, R. L., & Neary, T. M. (2013). Making sense of nonsense: Experiences of mild cognitive impairment. Sociology of Health & Illness, 35(1), 130–146. doi:10.1111/j.1467-9566.2012.01481.x
   PubMed Web of Science ®Google Scholar
• Bengtsson, M. (2016). How to plan and perform a qualitative study using content analysis. NursingPlus Open, 2, 8–14. doi:10.1016/j.npls.2016.01.001
   Google Scholar
• Butler, M., McCreedy, E., Nelson, V. A., Desai, P., Ratner, E., Fink, H. A., … Kane, R. L. (2018). Does cognitive training prevent cognitive decline?: A systematic review. Annals of Internal Medicine, 168(1), 63–68. doi:10.7326/M17-1531
   PubMed Web of Science ®Google Scholar
• Corrigan, P. W., & Rao, D. (2012). On the self-stigma of mental illness: Stages, disclosure, and strategies for change. Canadian Journal of Psychiatry. Revue Canadienne de Psychiatrie, 57(8), 464–469. doi:10.1177/070674371205700804
   PubMed Web of Science ®Google Scholar
• Davis, D. S. (2014). Alzheimer disease and pre-emptive suicide. Journal of Medical Ethics, 40(8), 543–549. doi:10.1136/medethics-2012-101022
   PubMed Web of Science ®Google Scholar
• Deuschl, G., & Maier, W. (2016). S3-Leitlinie “Demenzen”. Retrieved from https://www.awmf.org/uploads/tx_szleitlinien/038-013l_S3-Demenzen-2016-07.pdf
   Google Scholar
• Deutsche Alzheimer Gesellschaft e.V. (2014). Mit Demenz zu Hause leben: Möglichkeiten der ambulanten Versorgung für Menschen mit Demenz. Alzheimer Info. Retrieved from https://www.deutsche-alzheimer.de/unser-service/archiv-alzheimer-info/mit-demenz-zu-hause-leben-moeglichkeiten-der-ambulanten-versorgung-fuer-menschen-mit-demenz.html
   Google Scholar
• Deutsche Alzheimer Gesellschaft e.V. (2018). Informationsblatt 3: Die Diagnose der Alzheimer Erkrankung und anderer Demenz Erkrankungen. Informationsblätter. Retrieved from https://www.deutsche-alzheimer.de/fileadmin/alz/pdf/factsheets/infoblatt3_diagnose_dalzg.pdf
   Google Scholar
• Deutsche Alzheimer Gesellschaft e.V. (2019). Gedächtnissprechstunden. Retrieved from http://www.deutsche-alzheimer.de/unser-service/gedaechtnissprechstunden.html
   Google Scholar
• Dresser, R. (2014). Pre-emptive suicide, precedent autonomy and preclinical Alzheimer disease. Journal of Medical Ethics, 40(8), 550–551. doi:10.1136/medethics-2013-101615
   PubMed Web of Science ®Google Scholar
• Dubois, B., Feldman, H. H., Jacova, C., Cummings, J. L., DeKosky, S. T., Barberger-Gateau, P., … Scheltens, P. (2010). Revising the definition of Alzheimer’s disease: A new lexicon. Lancet Neurology., 9(11), 1118–1127. doi:10.1016/S1474-4422(10)70223-4
   PubMed Web of Science ®Google Scholar
• Dubois, B., Hampel, H., Feldman, H. H., Scheltens, P., Aisen, P., Andrieu, S., Bakardjian, H., & Jack, C. R. Jr.(2016). Preclinical Alzheimer’s disease: Definition, natural history, and diagnostic criteria. Alzheimer's & Dementia, 12(3), 292–323., doi:10.1016/j.jalz.2016.02.002
   PubMed Web of Science ®Google Scholar
• Eschweiler, G., Leyhe, T., Klöppel, S., & Hüll, M. (2010). Neue Entwicklungen in der Demenz Diagnostik. [New developments in dementia diagnostics.]. Deutsches Ärzteblatt, 107, 677–683.
   Google Scholar
• Fang, M. L., Coatta, K., Badger, M., Wu, S., Easton, M., Nygård, L., … Sixsmith, A. (2017). Informing Understandings of Mild Cognitive Impairment for Older Adults: Implications From a Scoping Review. Journal of Applied Gerontology, 36(7), 808–839. doi:10.1177/0733464815589987
   PubMed Web of Science ®Google Scholar
• Fink, H. A., Jutkowitz, E., McCarten, J. R., Hemmy, L. S., Butler, M., Davila, H., … Kane, R. L. (2018). Pharmacologic interventions to prevent cognitive decline, mild cognitive impairment, and clinical Alzheimer-type dementia: A systematic review. Annals of Internal Medicine, 168(1), 39–51. doi:10.7326/M17-1529
   PubMed Web of Science ®Google Scholar
• Ganguli, M., Snitz, B. E., Saxton, J. A., Chang, C.-C. H., Lee, C.-W., Vander Bilt, J., … Petersen, R. C. (2011). Outcomes of mild cognitive impairment by definition: A population study. Archives of Neurology, 68(6), 761–767. doi:10.1001/archneurol.2011.101
   PubMedGoogle Scholar
• Gaskell, G. (2000). Individuals and groups interviewing. In G. G. Bauer MV (Ed.), Qualitative Researching with test, image and sound: A practical handbook (pp. 38–56). London: Sage.
   Google Scholar
• Gilleard, C., & Higgs, P. (2014). Studying dementia: The relevance of the fourth age. Quality in Ageing and Older Adults, 15(4), 241–243. doi:10.1108/QAOA-10-2014-0027
   Google Scholar
• Graham, J. R. K. (2006). Mild cognitive impairment: Ethical considerations for nosological flexibility in human kinds. Philosophy, Psychiatry & Psychology, 13, 31–43. doi:10.1353/ppp.2006.0039
   Google Scholar
• Harvard School of Public Health & Alzheimer Europe. (2011). Five-country Alzheimer’s disease survey. Retrieved from https://www.alzheimer-europe.org/Research/Value-of-Knowing
   Google Scholar
• Haw, C., Harwood, D., & Hawton, K. (2009). Dementia and suicidal behavior: A review of the literature. International Psychogeriatrics, 21(3), 440–453. doi:10.1017/S1041610209009065
   PubMed Web of Science ®Google Scholar
• Herrmann, L. K., Welter, E., Leverenz, J., Lerner, A. J., Udelson, N., Kanetsky, C., & Sajatovic, M. (2018). A systematic review of dementia-related stigma research: Can we move the stigma dial? The American Journal of Geriatric Psychiatry, 26(3), 316–331. doi:10.1016/j.jagp.2017.09.006
   PubMed Web of Science ®Google Scholar
• IfD Allensbach. (2016). ROLAND Rechtsreport 2016 - Vorbereitung der Bevölkerung auf eine mögliche Pflegebedürftigkeit und ihre Einstellung zur aktiven und passiven Sterbehilfe [ROLAND legal report - Preparation of the population for a possible need for long-term care and its attitude to active and passive euthanasia].Köln: ROLAND Rechtsschutz-Versicherungs-AG.
   Google Scholar
• Jack, C. R., Albert, M. S., Knopman, D. S., McKhann, G. M., Sperling, R. A., Carrillo, M. C., … Phelps, C. H. (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, 7(3), 257–262. doi:10.1016/j.jalz.2011.03.004
   PubMed Web of Science ®Google Scholar
• Jack, C. R., Bennett, D. A., Blennow, K., Carrillo, M. C., Feldman, H. H., Frisoni, G. B., … Dubois, B. (2016). A/T/N: An unbiased descriptive classification scheme for Alzheimer disease biomarkers. Neurology, 87(5), 539–547. doi:10.1212/WNL.0000000000002923
   PubMed Web of Science ®Google Scholar
• Jellinger, K. A. (2006). Clinicopathological analysis of dementia disorders in the elderly–an update. Journal of Alzheimer's Disease, 9(s3), 61–70. doi:10.3233/JAD-2006-9S308
   PubMedGoogle Scholar
• Jessen, F. (2019). Früherkennung der Alzheimer-Krankheit und Ansätz der Prävention. [Early detection of Alzheimer’s disease and approaches for prevention. Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz, 62(3), 255–260.]. doi:10.1007/s00103-019-02877-2
   PubMed Web of Science ®Google Scholar
• Johnson, R., Harkins, K., Cary, M., Sankar, P., & Karlawish, J. (2015). The relative contributions of disease label and disease prognosis to Alzheimer’s stigma: A vignette-based experiment. Social Science & Medicine, 143, 117–127. doi:10.1016/j.socscimed.2015.08.031
   PubMed Web of Science ®Google Scholar
• Johnson, K. A., Minoshima, S., Bohnen, N. I., Donohoe, K. J., Foster, N. L., Herscovitch, P., … Thies, W. H. (2013). Appropriate use criteria for amyloid PET: A report of the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer’s Association. Journal of Nuclear Medicine, 54(3), 476–490. doi:10.2967/jnumed.113.120618
   PubMed Web of Science ®Google Scholar
• Kalaria, R. N., Maestre, G. E., Arizaga, R., Friedland, R. P., Galasko, D., Hall, K., … Antuono, P, … for the World Federation of Neurology Dementia Research Group. (2008). Alzheimer’s disease and vascular dementia in developing countries: Prevalence, management, and risk factors. Lancet Neurology, 7(9), 812–826. doi:10.1016/S1474-4422(08)70169-8
   PubMed Web of Science ®Google Scholar
• Karlawish, J. (2011). Addressing the ethical, policy, and social challenges of preclinical Alzheimer disease. Neurology, 77(15), 1487–1493. doi:10.1212/WNL.0b013e318232ac1a
   PubMed Web of Science ®Google Scholar
• Krippendorff, K. (2013). Content analysis: an introduction to its methodology (3rd ed.). Los Angeles, CA: .Sage.
   Google Scholar
• Leibing, A. (2018). Situated prevention: Framing the “new dementia”. The Journal of Law, Medicine & Ethics, 46(3), 704–716. doi:10.1177/1073110518804232
   PubMed Web of Science ®Google Scholar
• Lingler, J. H., Butters, M. A., Gentry, A. L., Hu, L., Hunsaker, A. E., Klunk, W. E., … Schulz, R. (2016). Development of a standardized approach to disclosing amyloid imaging research results in mild cognitive impairment. Journal of Alzheimer's Disease, 52(1), 17–24. doi:10.3233/JAD-150985
   PubMed Web of Science ®Google Scholar
• Lock, M. M. (2013). The Alzheimer conundrum: entanglements of dementia and aging. Princeton, NJ: Princeton University Press.
   Google Scholar
• Lorig, K. R., & Holman, H. (2003). Self-management education: History, definition, outcomes, and mechanisms. Annals of Behavioral Medicine, 26(1), 1–7. doi:10.1207/S15324796ABM2601_01
   PubMed Web of Science ®Google Scholar
• Luck, T., Luppa, M., Sieber, J., Schomerus, G., Werner, P., Konig, H. H., & Riedel-Heller, S. G. (2012). Attitudes of the German general population toward early diagnosis of dementia–results of a representative telephone survey. PLoS One., 7(11), e50792. doi:10.1371/journal.pone.0050792
   PubMed Web of Science ®Google Scholar
• Malek-Ahmadi, M. (2016). Reversion from mild cognitive impairment to normal cognition: A meta-analysis. Alzheimer Disease & Associated Disorders, 30(4), 324–330. doi:10.1097/WAD.0000000000000145
   PubMed Web of Science ®Google Scholar
• Mattsson, N., Brax, D., & Zetterberg, H. (2010). To know or not to know: Ethical issues related to early diagnosis of Alzheimer’s disease. International Journal of Alzheimer's Disease, Article ID 841941. doi:10.4061/2010/841941
   Google Scholar
• Metschke, R., & Wellbrock, R. (2002). Datenschutz in Wissenschaft und Forschung (3rd ed.). Berlin: Berliner Beauftragter Für Datenschutz Und Informationsfreiheit.
   Google Scholar
• Milne, R., Bunnik, E., Diaz, A., Richard, E., Badger, S., Gove, D., … Brayne, C. (2018). Perspectives on communicating biomarker-based assessments of Alzheimer’s disease to cognitively healthy individuals. Journal of Alzheimer's Disease, 62(2), 487–498. doi:10.3233/JAD-170813
   PubMed Web of Science ®Google Scholar
• Mitchell, A. J., & Shiri-Feshki, M. (2009). Rate of progression of mild cognitive impairment to dementia–meta-analysis of 41 robust inception cohort studies. Acta Psychiatrica Scandinavica, 119(4), 252–265. doi:10.1111/j.1600-0447.2008.01326.x
   PubMed Web of Science ®Google Scholar
• Mozersky, J., Sankar, P., Harkins, K., Hachey, S., & Karlawish, J. (2018). Comprehension of an Elevated amyloid positron emission tomography biomarker result by cognitively normal older adults. JAMA Neurology, 75(1), 44–50. doi:10.1001/jamaneurol.2017.2954
   PubMed Web of Science ®Google Scholar
• Nationaler Ethikrat. (2006). Selbstbestimmung und Fürsorge am Lebensende - Stellungsnahme [Self-determination and care at the end of one’s life – A statement of position]. Berlin: Nationaler Ethikrat.
   Google Scholar
• Petersen, R. C., Smith, G. E., Waring, S. C., Ivnik, R. J., Tangalos, E. G., & Kokmen, E. (1999). Mild cognitive impairment: Clinical characterization and outcome. Archives of Neurology, 56(3), 303–308. doi:10.1001/archneur.56.3.303
   PubMed Web of Science ®Google Scholar
• Preische, O., Schultz, S. A., Apel, A., Kuhle, J., Kaeser, S. A., Barro, C., Gräber, S., & Jucker, M. (2019). Serum neurofilament dynamics predicts neurodegeneration and clinical progression in presymptomatic Alzheimer’s disease. Nature Medicine, 25(2), 277–283. doi:10.1038/s41591-018-0304-3
   PubMed Web of Science ®Google Scholar
• Prince, M., Wimo, A., Guerchet, M., Ali, G. C., Wu, Y. T., & Prina, M. (2015). World Alzheimer report 2015. The global impact of dementia. An analysis pf prevalence, incidence, cost and trends. London, UK: Alzheimer’s Disease International.
   Google Scholar
• Rabinovici, G. D., Gatsonis, C., Apgar, C., Chaudhary, K., Gareen, I., Hanna, L., … Carrillo, M. C. (2019). Association of amyloid positron emission tomography with subsequent change in clinical management among Medicare beneficiaries with mild cognitive impairment or dementia. JAMA, 321(13), 1286–1294. doi:10.1001/jama.2019.2000
   PubMed Web of Science ®Google Scholar
• Rabins, P. V. (2007). Can suicide be a rational and ethical act in persons with early or pre-dementia?. The American Journal of Bioethics, 7(6), 47–49. doi:10.1080/15265160701347494
   PubMed Web of Science ®Google Scholar
• Robinson, S. M., Canavan, M., & O’Keeffe, S. T. (2014). Preferences of older people for early diagnosis and disclosure of Alzheimer’s disease (AD) before and after considering potential risks and benefits. Archives of Gerontology and Geriatrics, 59(3), 607–612.
   PubMed Web of Science ®Google Scholar
• Schicktanz, S., Schweda, M., Ballenger, J. F., Fox, P. J., Halpern, J., Kramer, J. H., … Jagust, W. J. (2014). Before it is too late: Professional responsibilities in late-onset Alzheimer’s research and pre-symptomatic prediction. Frontiers in Human Neuroscience., 8, 921.
   PubMed Web of Science ®Google Scholar
• Schindler, S. E., Bollinger, J. G., Ovod, V., Mawuenyega, K. G., Li, Y., Gordon, B. A., …., Bateman, R. J. (2019). High-precision plasma beta-amyloid 42/40 predicts current and future brain amyloidosis. Neurology, 93(17), e1647–e1659.
   PubMed Web of Science ®Google Scholar
• Schweda, M., Kogel, A., Bartels, C., Wiltfang, J., Schneider, A., & Schicktanz, S. (2018). Prediction and early detection of Alzheimer’s dementia: Professional disclosure practices and ethical attitudes. Journal of Alzheimer's Disease, 62(1), 145–155. doi:10.3233/JAD-170443
   PubMed Web of Science ®Google Scholar
• Sperling, R. A., Aisen, P. S., Beckett, L. A., Bennett, D. A., Craft, S., Fagan, A. M., … Phelps, C. H. (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. Alzheimer's & Dementia, 7(3), 280–292. doi:10.1016/j.jalz.2011.03.003
   PubMed Web of Science ®Google Scholar
• Steller, S. (2019). Die rechtliche Problematik der aktiven direkten Sterbehilfe. In Ärztliche Suizidbeihilfe und aktive Sterbehilfe unter besonderer Berücksichtigung des §217 StGB (Vol. 120). [The juridical complexity of active direct euthanasia. In suicide assistance by doctors and active euthanasia with special consideration of §217 StGB]. Baden-Baden: Tectum.
   Google Scholar
• Stites, S. D., Milne, R., & Karlawish, J. (2018). Advances in Alzheimer's imaging are changing the experience of Alzheimer's disease. Alzheimer's & Dementia (Amsterdam, Netherlands)), 10, 285–300. doi:10.1016/j.dadm.2018.02.006
   PubMedGoogle Scholar
• Taylor, S. J., Pinnock, H., Epiphaniou, E., Pearce, G., Parke, H. L., Schwappach, A., … Sheikh, A. (2014). A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS - Practical systematic Review of Self-Management Support for long-term conditions. Health Services and Delivery Research, 2(53), 1–580. doi:10.3310/hsdr02530
   Google Scholar
• Van der Burg, S., Schreuder, F. H. B. M., Klijn, C. J. M., & Verbeek, M. M. (2019). Valuing biomarker diagnostics for dementia care: Enhancing the reflection of patients, their care-givers and members of the wider public. Medicine, Health Care and Philosophy, 22(3), 439–451. doi:10.1007/s11019-018-09883-2
   PubMed Web of Science ®Google Scholar
• van Maurik, I. S., Slot, R. E. R., Verfaillie, S. C. J., Zwan, M. D., Bouwman, F. H., Prins, N. D., Teunissen, C. E., & van der Flier, W. M. (2019). Personalized risk for clinical progression in cognitively normal subjects-the ABIDE project. Alzheimer's Research & Therapy, 11(1), 33. doi:10.1186/s13195-019-0487-y
   PubMed Web of Science ®Google Scholar
• Vanderschaeghe, G., Schaeverbeke, J., Bruffaerts, R., Vandenberghe, R., & Dierickx, K. (2017). Amnestic MCI patients' experiences after disclosure of their amyloid PET result in a research context. Alzheimer's Research & Therapy, 9(1), 92. doi:10.1186/s13195-017-0321-3
   PubMedGoogle Scholar
• Vos, S. J. B., Verhey, F., Frölich, L., Kornhuber, J., Wiltfang, J., Maier, W., Peters, O., & Visser, P. J. (2015). Prevalence and prognosis of Alzheimer’s disease at the mild cognitive impairment stage. Brain, 138(5), 1327–1338. doi:10.1093/brain/awv029
   PubMed Web of Science ®Google Scholar
• Werner, P., Goldstein, D., & Heinik, J. (2011). Development and validity of the Family Stigma in Alzheimer's disease Scale (FS-ADS)). Alzheimer Disease and Associated Disorders, 25(1), 42–48. doi:10.1097/WAD.0b013e3181f32594
   PubMed Web of Science ®Google Scholar
• Werner, P., & Heinik, J. (2008). Stigma by association and Alzheimer's disease. Aging & Mental Health, 12(1), 92–99. doi:10.1080/13607860701616325
   PubMed Web of Science ®Google Scholar
• Werner, P., Karnieli-Miller, O., & Eidelman, S. (2013). Current knowledge and future directions about the disclosure of dementia: A systematic review of the first decade of the 21st century. Alzheimer's & Dementia, 9(2), e74–88. doi:10.1016/j.jalz.2012.02.006
   PubMedGoogle Scholar
• Werner, P., & Korczyn, A. D. (2008). Mild cognitive impairment: Conceptual, assessment, ethical, and social issues. Clinical Interventions in Aging, 3(3), 413–420. doi:10.2147/CIA.S1825
   PubMed Web of Science ®Google Scholar
• Werner, P., Mittelman, M. S., Goldstein, D., & Heinik, J. (2012). Family stigma and caregiver burden in Alzheimer’s disease. The Gerontologist, 52(1), 89–97. doi:10.1093/geront/gnr117
   PubMed Web of Science ®Google Scholar
• Whitehouse, P. J., & Moody, H. R. (2006). Mild cognitive impairment: A ‘hardening of the categories? Dementia, 5(1), 11–25. doi:10.1177/1471301206059752
   Google Scholar
• Winblad, B., Palmer, K., Kivipelto, M., Jelic, V., Fratiglioni, L., Wahlund, L.-O., … Petersen, R. C. (2004). Mild cognitive impairment–beyond controversies, towards a consensus: Report of the International Working Group on Mild Cognitive Impairment. Journal of Internal Medicine, 256(3), 240–246. doi:10.1111/j.1365-2796.2004.01380.x
   PubMed Web of Science ®Google Scholar
• Witte, M., Barnes, J., Lingler, J., Agronin, M., Hochstetler, H., Healey, K., … Trzepacz, P. (2013). Testing the use of standardized scripts for disclosing ‘hypothetical/mock’ amyloid PET scan results to nondemented cognitively impaired patients and their care partners. Alzheimer’s & Dementia, 9(4), 131–132.
   Google Scholar
• Wortmann, M. (2012). Dementia: A global health priority - highlights from an ADI and World Health Organization report. Alzheimer's Research & Therapy, 4(5), 40. doi:10.1186/alzrt143
   PubMed Web of Science ®Google Scholar
• Wu, Y.-T., Beiser, A. S., Breteler, M. M. B., Fratiglioni, L., Helmer, C., Hendrie, H. C., … Brayne, C. (2017). The changing prevalence and incidence of dementia over time - current evidence. Nature Reviews Neurology, 13(6), 327–339. doi:10.1038/nrneurol.2017.63
   PubMed Web of Science ®Google Scholar