Abstract
Shared decision-making is a model of medical decision-making, which aims at reducing the informational and decisional power asymmetry between physician and patient to obtain jointly reached agreements on medical treatment. SDM can also be applied in the case of early stage of Alzheimer’s disease, as long as individuals’ with dementia decisional capacity still exists. Because of the loss of cognitive functions in the course of the disease, upcoming important issues like medical treatment and legal and social issues should be made as soon as possible after diagnosis, so that persons with dementia can be involved in the process of decision-making.
Key words
This is a preview of subscription content, log in via an institution.
Buying options
Tax calculation will be finalised at checkout
Purchases are for personal use only
Learn about institutional subscriptionsReferences
Deutsche Alzheimer Gesellschaft (2017) Die Häufigkeit der Demenzerkrankungen. https://www.deutsche-alzheimer.de/fileadmin/alz/pdf/factsheets/infoblatt1_haeufigkeit_demenzerkrankungen_dalzg.pdf. Accessed 25 April 2017
Prince MJ et al (2015) The world Alzheimer report 2015, The global impact of dementia: an analysis of prevalence, incidence, cost and trends. https://www.alz.co.uk/research/world-report-2015. Accessed 26 April 2017
WHO (2016) Dementia fact sheet April 2016. http://www.who.int/mediacentre/factsheets/fs362/en/. Accessed 26 April 2017
Leicht H et al (2011) Net costs of dementia by disease stage. Acta Psychiatr Scand 124:384–395
BMBF (2016) Rahmenprogramm der Gesundheitsforschung der Bundesregierung
Forsa (2013) .Angst vor Krankheiten. https://www.dak.de/dak/download/forsa-umfrage-demenz-1331362.pdf. Accessed 26 April 2017
Deutsche Gesellschaft für Psychiatrie, Psychotherapie und Nervenheilkunde (DGPPN); Deutsche Gesellschaft für Neurologie (Hrsg.) (2016) S3-Leitlinie “Demenzen”. http://www.dgppn.de/fileadmin/user_upload/_medien/download/pdf/kurzversion-leitlinien/S3-LL-Demenzen-240116-1.pdf. Accessed 27 April 2017
Bronner K et al (2016) Which medical and social decision topics are important after early diagnosis of Alzheimer’s disease from perspectives of people with Alzheimer’s disease, spouses and professionals? BMC Res Notes 9:149
Charles C et al (1997) Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci 44:681–692
Emanuel EJ, Emanuel LL (1992) Four models of the physician-patient relationship. JAMA 267:2221–2226
Charles C et al (1999) What do we mean by partnership in making decisions about treatment? BMJ 319:780–782
Coulter A et al (2017) Shared decision making in the UK: moving towards wider uptake. Z Evid Fortbild Qual Gesundhwes 123-124:99–103. https://doi.org/10.1016/j.zefq.2017.05.010
Spatz ES et al (2017) Shared decision making as part of value based care: new U.S. policies challenge our readiness. Z Evid Fortbild Qual Gesundhwes 123-124:104–108. https://doi.org/10.1016/j.zefq.2017.05.012
Martin H et al (2017) The long way of implementing patient-centered care and shared decision-making in Germany. Z Evid Fortbild Qual Gesundhwes 123-124:46–51. https://doi.org/10.1016/j.zefq.2017.05.006
Stacey D et al (2017) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 4:CD001431
Hamann J et al (2006) Partizipative Entscheidungsfindung. Implikationen des Modells “Shared Decision Making” für Psychiatrie und Neurologie. Nervenarzt 9:1071–1078
Reichhart T et al (2008) Patientenbeteiligung in der Psychiatrie–eine kritische Bestandsaufnahme. Psychiatr Prax 35:111–121
NICE (2009) Depression in adults: recognition and management: NICE Clinical Guideline [CG90]. https://www.nice.org.uk/guidance/cg90/resources/depression-in-adults-recognition-and-management-pdf-975742636741. Accessed 27 April 2017
NICE (2014) Psychosis and schizophrenia in adults: prevention and management: NICE Clinical Gudeline [CG178]. https://www.nice.org.uk/guidance/cg178/resources/psychosis-and-schizophrenia-in-adults-prevention-and-management-pdf-35109758952133. Accessed 27 April 2017
Hamann J, Heres S (2014) Adapting shared decision making for individuals with severe mental illness. Psychiatr Serv 65:1483–1486
Hirschman KB et al (2004) How does an Alzheimer’s disease patients’ role in medical decision making change over time? J Geriatr Psychiatry Neurol 17:55–60
Okonkwo OC et al (2008) Medical decision-making capacity in mild cognitive impairment: a 3-year longitudinal study. Neurology 71:1474–1480
NICE (2006) Dementia: supporting people with dementia and their carers in health and social care: NICE Clinical Guideline [CG42]. https://www.nice.org.uk/guidance/cg42/resources/dementia-supporting-people-with-dementia-and-their-carers-in-health-and-social-care-pdf-975443665093. Accessed 27 April 2017
Alzheimer’s Association Early-Stage Initiative (2006) History of the Alzheimer’s association early-stage initiative. http://www.alz.org/documents/national/EDInitiative.pdf. Accessed 27 April 2017
Alzheimer Europe (2006) Paris declaration 2006. http://www.alzheimer-europe.org/Policy-in-Practice2/Paris-Declaration-2006. Accessed 27 April 2017
Moye J et al (2006) Neuropsychological predictors of decision-making capacity over 9 months in mild-to-moderate dementia. J Gen Intern Med 21:78–83
Hirschman KB et al (2005) Do Alzheimer’s disease patients want to participate in a treatment decision, and would their caregivers let them? Gerontologist 45:381–388
Hamann J et al (2011) Patient participation in medical and social decisions in Alzheimer’s disease. J Am Geriatr Soc 59:2045–2052
Hamann J et al (2009) Psychiatrists’ use of shared decision making in the treatment of schizophrenia: patient characteristics and decision topics. Psychiatr Serv 60:1107–1112
Vollmann J et al (2004) Mental competence and neuropsychologic impairments in demented patients. Nervenarzt 75:29–35
Karlawish JHT et al (2000) Caregivers’ preferences for the treatment of patients with Alzheimer’s disease. Neurology 55:1008–1014
Karlawish JHT et al (2002) Relationship between Alzheimer’s disease severity and patient participation in decision about their medical care. J Geriatr Psychiatry Neurol 15:68–72
Peterson RC et al (2001) Current concepts in mild cognitive impairment. Arch Neurol 58:1985–1992
Raschetti R et al (2007) Cholinesterase inhibitors in mild cognitive impairment: a systematic review of randomised trials. PLoS Med 4:e338
DeKosky ST (2008) Ginkgo Biloba for prevention of dementia: a randomized controlled trial. JAMA 300:2253–2262
Rosen C et al (2013) Fluid biomarkers in Alzheimer’s disease–current concepts. Mol Neurodegener 8:20
Kivipelto M, Soloman A (2008) Alzheimer’s disease–the ways of prevention. J Nutr Health Aging 12:89S–94S
Alonso A et al (2009) Cardiovascular risk factors and dementia mortality: 40 years of follow-up in the seven countries study. J Neurol Sci 280:79–83
Feart C et al (2009) Adherence to a Mediterranean diet, cognitive decline, and risk of dementia. JAMA 302:638–648
Scarmeas N et al (2009) Physical activity, diet, and risk of Alzheimer disease. JAMA 302:627–637
Sindi S, Mangialasche F, Kivipelto M (2015) Advances in the prevention of Alzheimer’s disease. F1000Prime Rep 7:50. 10.12703/P7-50
Marckmann G, in der Schmitten J (2014) Krebsfrüherkennung aus Sicht der Public-Health-Ethik. Bundesgesundheitsbl 57:327. https://doi.org/10.1007/s00103-013-1913-0
Williamson J, Goldman J, Marder KS (2009) Genetic aspects of Alzheimer disease. Neurologist 15:80–86
Jessen F, Dodel R (2014) Prädiktion der Alzheimer Demenz. Nervenarzt 85:1233–1237
Quian W et al (2016) Misdiagnosis of Alzheimer’s disease: inconsistencies between clinical diagnosis. Alzheimers Dement 12:293
Deutsche Alzheimer Gesellschaft (2013) Empfehlungen zum Umgang mit Frühdiagnostik bei Demenz. https://www.deutsche-alzheimer.de/fileadmin/alz/pdf/empfehlungen/empfehlungen_fruehdiagnostik_demenz_dalzg.pdf. Accessed 2 May 2017
Robert PH et al (2005) Grouping for behavioral and psychological symptoms in dementia: clinical and biological aspects. Consensus paper of the European Alzheimer disease consortium. Eur Psychiatry 20:490–496
Winblad B et al (2006) 3-year study of donepezil therapy in Alzheimer’s disease: effects of early and continuous therapy. Dement Geriatr Cogn Disord 21:353–363
NICE (2011) Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer’s disease. Technology appraisal guidance [TA217]. https://www.nice.org.uk/guidance/ta217/resources/donepezil-galantamine-rivastigmine-and-memantine-for-the-treatment-of-alzheimers-disease-pdf-82600254699973. Accessed 2 May 2017
McShane R, Areosa Sastre A, Minakaran N (2006) Memantine for dementia. Cochrane Database Syst Rev 19:CD003154
Alzheimer Europe (2016) Clinical trials watch. http://www.alzheimer-europe.org/Research/Clinical-Trials-Watch. Accessed 3 May 2017
Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen (IQWiG) (2009) Nichtmedikamentöse Behandlung der Alzheimer Demenz. Abschlussbericht A05-19D(Version 1.0 Stand: 13.01.2009), Köln
Pinquart M, Forstmeier S (2012) Effects of reminiscence interventions on psychosocial outcomes: a meta-analysis. Aging Ment Health 16:541–558
Korczak D, Habermann C, Braz S (2013) The effectiveness of occupational therapy for persons with moderate and severe dementia. GMS Health Technol Assess 9:1–7
McLaren AN, Lamantia MA, Callahan CM (2013) Systematic review of non-pharmacologic interventions to delay functional decline in community-dwelling patients with dementia. Aging Ment Health 17:655–666
Forbes D et al (2013) Exercise programs for people with dementia. Cochrane Database Syst Rev 12:CD006489
Schölzel-Dorenbos CJ et al (2009) Quality of life and burden of spouses of Alzheimer disease patients. Alzheimer Dis Assoc Disord 23:171–177
Chien LY et al (2011) Caregiver support groups in patients with dementia: a meta-analysis. Int J Geriatr Psychiatry 26:1089–1098
Wolf-Ostermann K et al (2017) Users of regional dementia care networks in Germany: first results of the evaluation study DemNet-D. Z Gerontol Geriatr 50:21–27
Sozialgesetzbuch (SGB) Neuntes Buch (IX) - Rehabilitation und Teilhabe behinderter Menschen - (Artikel 1 des Gesetzes v. 19.6.2001, BGBl. I S. 1046) § 145 Unentgeltliche Beförderung, Anspruch auf Erstattung der Fahrgeldausfälle
Sozialgesetzbuch (SGB) Neuntes Buch (IX) - Rehabilitation und Teilhabe behinderter Menschen - (Artikel 1 des Gesetzes v. 19.6.2001, BGBl. I S. 1046) § 85 Erfordernis der Zustimmung
Emanuel LL, von Gunten CF, Ferris FD (2000) Advance care planning. Arch Fam Med 9:1181–1187
Coors M, Jox R, in der Schmitten J (Hrsg) (2015) Advance care planning: Von der Patientenverfügung zur gesundheitlichen Vorausplanung. Kohlhammer, Stuttgart
Wolter DK (2014) Beginnende Demenz und Fahreignung. Teil 2: Das Assessment und seine praktischen Konsequenzen. Z Gerontol Geriat 47:345–355
Fastenmeier W, Gstalter H (2014) Fahreignung älterer Kraftfahrer im internationalen Vergleich. Literaturrecherche, Analyse und Bewertung. Forschungsbericht Nr. 25. Unfallforschung der Versicherer, Berlin
Von Kutzleben M et al (2012) Community-dwelling persons with dementia: what do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia. Aging Ment Health 16:378–390
Hirschman KB, Kapo JM, Karlawish JH (2008) Identifying the factors that facilitate or hinder advance planning by persons with dementia. Alzheimer Dis Assoc Disord 22:293–298
DeVleminck A et al (2014) Barriers to advance care planning in cancer, heart failure and dementia patients: a focus group study on general practitioners’ views and experiences. PLoS One 9:e84905
Callahan CM et al (2009) Integrating care for older adults with cognitive impairment. Curr Alzheimer Res 6:368–374
Morant N, Kaminskiy E, Ramon S (2016) Shared decision making for psychiatric medication management: beyond the micro-social. Health Expect 19:1002–1014
Towle A, Godolphin W (1999) Framework for teaching and learning informed shared decision making. BMJ 319:766–771
O'Connor AM et al (2009) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 8:CD001431
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2018 Springer Science+Business Media, LLC
About this protocol
Cite this protocol
Bronner, K., Hamann, J. (2018). Shared Decision-Making and Important Medical and Social Decisions in the Context of Early Diagnosis of Alzheimer’s Disease. In: Perneczky, R. (eds) Biomarkers for Preclinical Alzheimer’s Disease. Neuromethods, vol 137. Humana Press, New York, NY. https://doi.org/10.1007/978-1-4939-7674-4_18
Download citation
DOI: https://doi.org/10.1007/978-1-4939-7674-4_18
Published:
Publisher Name: Humana Press, New York, NY
Print ISBN: 978-1-4939-7673-7
Online ISBN: 978-1-4939-7674-4
eBook Packages: Springer Protocols