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Ethics of Ambient Assisted Living Technologies for Persons with Dementia, © January 2016 DECLARATION peter novitzky ETHICSOFAMBIENTASSISTEDLIVINGTECHNOLOGIESFOR PERSONSWITHDEMENTIA ETHICSOFAMBIENTASSISTEDLIVING TECHNOLOGIESFORPERSONSWITHDEMENTIA peter novitzky ThLic., M.A., MSc. A Dissertation submitted in fulfilment of the requirements for the award of Doctor of Philosophy (Ph.D.) to the Dublin City University School of Computing Prof Bert Gordijn Prof Alan F. Smeaton (supervisory panel) January 2016 Peter Novitzky: Ethics of Ambient Assisted Living Technologies for Persons with Dementia, © January 2016 DECLARATION I hereby certify that this material, which I now submit for assessment on the programme of study leading to the award of Ph.D. is entirely my own work, that I have exercised reasonable care to ensure that the work is original, and does not to the best of my knowledge breach any law of copyright, and has not been taken from the work of others save and to the extent that such work has been cited and acknowledged within the text of my work. Signed: ID No.: 12210395 Date: 04/01/2016 ACKNOWLEDGMENTS My first and foremost thanks goes to my supervisors Prof Bert Gordijn, and Prof Alan F. Smeaton. Their contribution to the successful completion of this thesis was invaluable, as was their continuous support during the times of joy but also despair, which cannot be emphasised enough. I would also like to express my thanks to all the people at CLARITY – Centre For Sensor Web Technologies, Dublin City University, and INSIGHT – Centre For Data Ana- lytics who supported me in my work, particularly, Renaat Verbruggen, Eamon Newman, Tim Jacquemard, Deirdre Sheridan, Margaret Malone, Jonny Hobson, as well as many others. I wish to express my deep gratitude to my family, those passed away and alive, who supported or contributed to the success of my work. Special thanks goes to Valerie and Cynthia for their adamant encouragement. Finally, this research Ph.D would not be possible without the funding received from the European Community’s Seventh Framework Programme (FP7/2007–2013) under grant agreement 288199 – Dem@Care. vii CONTENTS 1introduction 1 1.1 Research Objectives . 1 1.2 Methodology . 2 1.2.1 First Research Objective: Ethical Challenges and Opportunities . 2 1.2.2 Second Research Objective: Interpretation of UDBHR Principles . 2 1.2.3 Third Research Objective: Normative Analysis of Ethical Issues . 10 1.2.4 Fourth Research Objective: Conclusions of the Ethical Analysis . 15 1.3 Relevance . 15 1.4 Outline of the Study . 17 2 terminology 19 2.1 Dementia . 19 2.1.1 History of Dementia . 19 2.1.2 Diagnosis of Dementia . 22 2.1.3 Care and Treatment of Dementia . 29 2.2 Ambient Assisted Living . 30 2.2.1 Classification of Ambient Assisted Living Technologies . 35 3 a review of contemporary work on the ethics of ambient as- sistedlivingtechnologiesforpersonswithdementia 45 3.1 Scope of Review . 45 3.2 Methodology . 45 3.2.1 Terminology . 47 3.2.2 Frequency of Occurrence of Most Ethically Relevant Terms . 48 3.3 Results . 49 3.3.1 Persons with Dementia . 50 3.3.2 Formal and Informal Care-Givers (Nurses, Family Proxies) . 56 3.3.3 Researchers and Clinicians . 58 3.3.4 (Software/Hardware) Engineers . 61 3.3.5 Designers . 65 3.3.6 Technicians . 67 3.4 Discussion . 68 3.4.1 Value of the Goals of AAL Technologies . 69 3.4.2 Special Vulnerability of PwDs in Their Private Homes . 72 3.4.3 Informed Consent . 74 3.5 Conclusion . 76 ix contents 4 valueofthegoalsofaaltechnologies 77 4.1 Interpretation of the Principle . 78 4.1.1 Principle of the UDBHR . 78 4.2 Policy Documents and Academic Literature . 86 4.2.1 Policy Documents . 86 4.2.2 Academic Literature . 89 4.3 Specification of Article 4 ............................. 104 4.3.1 Clinical Research . 105 4.3.2 Clinical Practice . 111 4.4 Balancing of Principles . 124 4.4.1 Principles Conflicting with Article 4 .................. 124 4.5 Summary . 125 5 special vulnerability and personal integrity of persons with dementiaandambientassistedlivingtechnologies 129 5.1 Interpretation of the Principle . 130 5.1.1 Principle of the UDBHR . 130 5.2 Policy Documents and Academic Literature . 146 5.2.1 Policy Documents . 146 5.2.2 Academic Literature . 151 5.3 Specification of Article 8 ............................. 164 5.3.1 Clinical Research . 165 5.3.2 Clinical Practice . 169 5.4 Balancing of Principles . 172 5.4.1 Principles Conflicting with Article 8 .................. 172 5.5 Summary . 179 5.5.1 Vulnerability of PwDs Based on UDBHR . 179 5.5.2 Personal Integrity of PwDs Involved in Research or Therapy . 181 6 informedconsentofpeoplewithdementia 183 6.1 Interpretation of Principles . 184 6.1.1 Principles of the UDBHR . 184 6.2 Policy Documents and Academic Literature . 209 6.2.1 Policy Documents . 209 6.2.2 Academic Literature . 215 6.3 Specification of the UDBHR Principles . 239 6.3.1 Clinical Research . 239 6.3.2 Clinical Practice . 245 6.4 Balancing of Principles . 249 6.4.1 Principles Conflicting with Article 6 .................. 249 6.4.2 Principles Conflicting with Article 7 .................. 249 x contents 6.5 Summary . 249 6.5.1 Informed Consent of PwDs During Research Involving AAL Tech- nologies . 250 6.5.2 Recommendations For Advance Directives . 252 6.5.3 Requirements For Formal and Informal Caregivers . 253 6.5.4 Recommendations For the Development and Deployment of AAL Technologies . 254 7 conclusion 257 7.1 Summary . 257 7.1.1 Introduction . 257 7.1.2 Findings . 258 7.1.3 Implications . 261 7.2 Outlook . 263 Appendices 265 a universaldeclarationonbioethicsandhumanrights 267 b figures and tables 279 bibliography 305 xi LISTOFFIGURES Figure B.1 Overall Timeline of the Results . 279 Figure B.2 Search Results in the Individual Databases . 280 Figure B.3 Timeline of Relevant Articles . 281 Figure B.4 Frequency of Ethical Terms . 282 LISTOFTABLES Table 2.1 Comparison of ADL and iADL Scales’ Items . 25 Table 4.1 Malignant approaches to Persons with Dementia (PwDs) by T. Kitwood (1997, pp. 46–47)....................... 115 Table 5.1 Overview of Kipnis’ Vulnerability Taxonomy (Kipnis 2003, p. 110) 152 Table 5.2 Taxonomy of ‘More Than Ordinary’ Vulnerabilities (Lange et al. 2013)................................... 162 Table B.1 Database Search Syntax . 284 Table B.2 Mepham’s Ethical Matrix of Ethical Issues for AAL Technologies Used for PwDs . 293 Table B.3 Overview of the Ethical Issues In the Resulted Literature . 303 ACRONYMS AAL Ambient Assisted Living AD Alzheimer’s Disease ADL Activity of daily living AI Artificial intelligence AmI Ambient intelligence xii acronyms ART Artificial Reproductive Technology AT Assistive Technology CIOMS Council for International Organizations of Medical Sciences DAT Digital Assistive Technology DLB Dementia with Lewy bodies DSM-5 Diagnostic and Statistical Manual of Mental Disorders: DSM-5 of the American Psychiatric Association EDCON European Dementia Consensus Network FDA Food and Drug Administration agency of the US Department of Health and Human Services FTD Fronto-temporal Dementia FTDL Fronto-temporal Lobe Degeneration HTA Health Technology Assessment iADL Instrumental activity of daily living IBC International Bioethics Committee ICD The International Classification of Diseases of the World Health Organization ICT Information and Communication Technology IFR International Federation of Robotics MacCAT MacArthur Competence Assessment Tool MCI Mild cognitive impairment MMSE Mini-Mental State Examinations NCD Neurocognitive Disorder NGO Non-governmental organisation NICE National Institute for Health and Care Excellence – United Kingdom NIH US National Institute of Health PDD Parkinson’s disease dementia PwD Person with Dementia R&D Research & development REC Research Ethics Committee UN United Nations UDBHR Universal Declaration on Bioethics and Human Rights UNECE United Nations Economic Commission for Europe UNESCO United Nations Educational, Scientific and Cultural Organization xiii acronyms VR Virtual Reality WHO World Health Organization WMA World Medical Association WT Welfare Technology xiv ABSTRACT peter novitzky: ethics of ambient assisted living technologies for per- sons with dementia Ageing populations worldwide are leading to an increasing incidence of dementia. Am- bient Assisted Living (AAL) technologies are seen as one of the solutions to tackle a variety of problems posed by dementia. In this thesis, the ethical challenges and oppor- tunities of AAL technologies for Persons with Dementia (PwDs) are identified through a systematic literature review. The three most prominent ethical issues are informed consent, special vulnerability of PwDs, and the value of the goals of AAL technologies. These key issues are comprehensively analysed in dedicated normative chapters as they arise during research & development (R&D) and clinical application of AAL technolo- gies for PwDs. The analysis is performed using a methodological framework based on the principles of the Universal Declaration on Bioethics and Human Rights (2005) developed by UNESCO. Each normative chapter concludes with a set of recommendations for the effective management of the ethical issues. xv 1 INTRODUCTION In this introductory chapter, the research objectives of this dissertation are presented, to- gether with the methodology describing how these research objectives are met, followed by a section about the relevance of the research topic, and the outline of this thesis. 1.1 research objectives The intention of this research is to contribute to the responsible development, clinical research, and application of Ambient Assisted Living (AAL) technologies for Persons with Dementia (PwDs).
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