Intelligent Technology for Dementia Care: Promises and Challenges Marcello Ienca, M.Sc. M.A., Jotterand Fabrice, Ph.D. M.A., Bernice Elger, M.D. Ph.D. Institute of Biomedical Ethics, University of Basel

Population Ageing and the Global Burden of Dementia Intelligent Technology for Dementia Care: Promises and Challenges, Marcello Ienca, Universität Basel million people > 65 worldwide 8.1% of the World population billion people > 65 worldwide 27.5% of the World population

Financial Burden and Caregiving Burden Intelligent Technology for Dementia Care: Promises and Challenges, Marcello Ienca, Universität Basel3  Total estimated worldwide cost of dementia  US $604 billion (2010)  Informal care (unpaid care provided by family and others)  Direct costs of social care (provided by community care professionals, and in residential home settings)  Direct costs of medical care (the costs of treating dementia and other conditions in primary and secondary care).  1% of the world’s GDP (0.35 % in low income countries – 1.24% in high income countries)  Care for 75% of dementia patients is provided by informal caregivers  Time-consuming (47 h per week)  Strain or burden in the form of psychological and physical morbidity  Psychological morbidity: depression, anxiety (Cooper et al. 2007)  Physical morbidity: cardiovascular problems, lower immunity, higher levels of chronic conditions, poorer sleep patterns (Vitaliano et al. 2003)  Social isolation (Leong 2001)

Intelligent Assistive Technology (IAT) for Dementia «Triple-Win Effect» (Pollack 2005): These technologies could aid in: I.Delaying or obviating the need for institutional long-term care  Saving significant cost to the health-care system as they could (Bharucha et al., 2009; Pollack, 2005). II.Executing caregiving tasks  Reducing the burden on informal caregivers III.Improve patient autonomy, independence, safety, social interaction  Increasing quality of life of patients and help fulfilling their wish to age in place 4 Intelligent Technology for Dementia Care: Promises and Challenges, Marcello Ienca, Universität Basel

Assistive Technology Technological systems or devices used to increase, maintain or improve functional capabilities of individuals living with cognitive, physical or communication disabilities (Marshall, 2000). Intelligent Assistive Technology  Any assistive technology that has its own computing capability. As computing technology becomes more advanced and less expensive, it can be built into an increasing number of device s of all kinds. In addition to personal and handheld computers, the almost infinite list of possible intelligent assistive devices includes mobility tools, alarms and sensors, geolocation instruments, home appliances, robots etc. 5

Purpose-oriented Categorization Intelligent Technology for Dementia Care: Promises and Challenges, Marcello Ienca, Universität Basel6 Categorization II – Level of the Human-Machine Interface

The Societal Dimension and the Information Gap  Low distribution and uptake  Producer-centered” models of technology development  Limited dissemination of information across relevant stakeholders  Absence of systematic plans for the management and regulation of IATs 8 Little information is available to technology designers and developers regarding the specific needs, wishes, and expectations of their target population (Kramer 2014). With direct information from target users being hard to achieve, prototypes are often developed in absence of systematic knowledge about the users’ expectation. Risk: Generating a vicious circle since unmet users’ expectations are a major indicator and predictor of low societal uptake and use. Little information is available to healthcare professionals and informal caregivers about available technologies.  Inadequate translation into healthcare practice and implementation

Recommendations 1.Production of a Systematic Technology Index to inform healthcare professionals and target users about current opportunities 2.Dissemination of knowledge across and among target users 3.Identification of the specific needs and wishes of people with dementia and implementation of those into the design process Extensive research on the views, needs and attitudes of target users Rapid transition to a human-centered approach as well as a user- centered model of technology design, development and assessment (Niemeijer et al., 2010; Robinson, Brittain, Lindsay, Jackson, & Olivier, 2009). Intelligent Technology for Dementia Care: Promises and Challenges, Marcello Ienca, Universität Basel9

The Legal Dimension: Big Data, Privacy, Culpability  Big Data: terabytes and petabytes of data pouring in to healthcare institutions and individuals  Traditional healthcare architectures and infrastructures are not up to the challenge  ATs may be capable to extract, measure, store and decode potentially sensitive information about their users  Risk for Privacy, Information Security and Data Protection  Neither dementia patients nor assistive devices are generally considered fully competent agents, hence fully entitled to legal responsibility and culpability  Lack of unequivocal standards for legal responsibility and culpability in emerging case-scenarios 10

Recommendations 1.Safeguards and protection mechanisms should be introduced to limit the access of such information to professionals and other relevant stakeholders while restricting access to malevolent agents and third-party companies interested in the data. 2.Need for systematic analysis of the specific rights that dementia patients are entitled to enforce when interacting with IATs (especially in the case of assistive robotics) 3.Need for a proactive and rigorous definition of the conditions for legal responsibility and culpability in both patients and robots. 11

The Ethical Dimension: Informed Consent and Justice While the participation of patients into the development of new applications is highly desirable, yet this inclusive approach poses the challenge of obtaining informed consent from patients  Dilemma:  Enrolling mild to moderate dementia patients into research will require extraordinary ethical standards BUT not enrolling will prevent the development of new beneficial solutions Fair distribution of technology is paramount to prevent the emergence of a technological divide which could exacerbate preexisting economic inequalities 12

Recommendations 1.Rigorous ethical standards for enrolling mild-to-moderate dementia patients in participatory technology development 1.Development of policy and regulatory mechanisms for guaranteeing the fair and widespread distribution IATs throughout society (e.g. incentives for producers and families, the implementation of reimbursement plans and other welfare mechanisms). 13

Thanks