Contributions/ outcomes of AAL devoted to Neurodegeneration and Alzheimer Dr Gerda Geyer Austrian Research Promotion Agency

AAL Needs and Opportunities Needs Maintaining health & functional capability Preserving independence & dignity Participation into society & social networks Feeling secure Expectations Personalised products and services Citizen empowerment Challenges Ageing population Increasing costs of social and health care Reducing workforce Improve quality of life for all Societal needs New concepts with evidence on effectiveness and economical sustainability Opportunities Intelligent mass products Customized services Intelligent processes Missing Business models Value chains Standardization Public-private partnership, living labs, evidence creation, best practices Integration of user needs into the development processes Customer centric, effective, accessible and economically sustainable service system

Integration of End-users in R&D Projects Rome, 19 Nov 2014Italian “Memory” event3 Integration of end users is a challenging task: needs special methods, communication skills and time Needs a flexible R&D design, if the end-users‘ input shall be integrated. Learning on both sides: end-users learn about the possibilities of ICT and technicians learn about the needs of end-users Success depends on mental capabilities (appreciation, respect etc.) and availability of physical resources (time, personnel, space and money etc.) of the project partners. The creation of a common language and a common understanding of the basic concepts need to be addressed Privacy is a fundamental right for human dignity and needs to be secured. …

Ethical Considerations I Rome, 19 Nov 2014Italian “Memory” event4 In AAL projects, ethical considerations apply 1)to the process of implementing the project, and 2)to the solutions targeted as results of the project. Both dimensions must be handled in ways that are ethically valid and acceptable to the end-users and to society in general (concept phase, user involvement during the project, testing of the solution, launch in the market).

Ethical Considerations II Rome, 19 Nov 2014Italian “Memory” event5 Ethics in the context of AAL projects is fundamentally about what a project can and shall do for the benefit of those defined as the end-users of that particular project. Ethical issues may also be raised regarding the relationships and social networks of the involved (or future) end-users. New AAL solutions might bring about new allocation of resources and responsibilities and thus have an impact that goes beyond the quality of life of primary end-users.

Conduct of an AAL Project Rome, 19 Nov 2014Italian “Memory” event6 In the conduct of an AAL project, ethical issues concern inter alia the correct recruitment and involvement of end-users. All end-users who participate in an AAL project, through interviews, observations and/or testing of prototypes, should know what they are signing up for and how they can withdraw from the project at any time. Transparency is the keyword.

Informed Consent Rome, 19 Nov 2014Italian “Memory” event7 a description of the project and its aims (accessible with respect to language and content), a specification of the role(s) of different end-users in the project, self-determination of the end-users (must be able to turn off systems or services at their own discretion), compensation provided to the primary end-users (expenses or fees paid, etc.), contact person in the project (for ethical issues and related questions), exit rights for individual end-users (procedure for withdrawal from the project at any time, without giving a reason and without incurring costs or penalties).

Special Concerns Rome, 19 Nov 2014Italian “Memory” event8 information and data management (relevant security and privacy rules have to be respected) increasingly important: end-users may get accustomed to special attention and service (important: exit strategy) macro level: distributive ethics

Functions Addressed in Dementia-Projects Rome, 19 Nov 2014Italian “Memory” event9 Signal/alarm to professional or informal carer Support ADL / independent living / self care Orientation & navigation Cognitive support Monitoring Patient Status Support informal carers -info/advice/e-learning/experiences Social interaction Surveillance (inside) Physical activity / rehabilitation / mobility Contacting people Coordination professional care Surveillance / localisation (outside) Entertainment

11/ What is Confidence? Goals  Remain mobile and active as long as possible despite dementia  Support for outdoor activities e.g. get safely from one point to the other  Connecting personal help with assistive technologies  Integration and expansion of the existing social network of older adults Core Services EmergencyDaily schedule/reminder Environmental serviceNavigation Assistance

11/ How does the project involve end-users? Requirements  Workshops (informal carers, professional caregivers, people with dementia)  Definition of user stories and scenarios  3 countries – Austria, Romania and Switzerland (country-specific conditions) System Design  1st Acceptance Test (Austria, Switzerland) Implementation  2nd Acceptance Test (Austria, Romania, Switzerland) Field Trials  2 field trials  Austria and Romania: Rural and urban area each 25 people with dementia for 6 weeks (2x)  Switzerland: One area with 26 people with dementia for 6 weeks (2x)

11/ What is the expected added value of Confidence? People with dementia  Remain mobile and active  Live independently as long as possible  Knowing there is a safety net Informal carers/professional caregivers  Sense of security e.g. when they are not at home  Relief, because many things can still be done by the elderly themselves  Knowing that they will be informed in case of an incident © Peter Hansen, panthermedia.net

11/ What is the expected business case?  Care organisation-based  Hosted by a service provider  Distributed by social care organisations  User administration and support by social care organisations  Involving volunteers (including compensation)  Austria  Community portal-based  Hosted by a service provider  Distributed by municipalities or similar institutions  User administration and support by the community itself  Involving volunteers (without compensation)  Romania  Provider based model  Hosted and distributed by a service provider  User administration and support via help desk  Without involvement of volunteers and formal carers  Switzerland © Herbie, fotolia.com

20 Dr. Gerda Geyer, Austrian Research Promotion Agency Tel: 0043(0)