Cognitive Prosthetic Device for Dementia: Enhancing Autonomy and Empowerment

1. Electronic assistance for community dwelling people with dementia; user-participatory development of a cognitive prosthetic device Alzheimer Europe 2009 Franka Meiland S. Sävenstedt, F. Moelaert, D. Craig, R.J. Davies, C.D. Nugent, A-L. Andersson, R.M. Dröes Dept. of Psychiatry, Alzheimer center, VU University medical center, Amsterdam STREP FP6-2005-IST-5

2. COGKNOW ConsortiumSep 2006 - Aug 2009 11 organisations in 8 countries

3. Aims Develop and evaluate a user-validated remotely configurable cognitive prosthetic device with associated services for people with milddementia Help ageing people with dementia to experience greater autonomy and feelings of empowerment, and to enjoy an enhanced quality of life To get knowledge and better understand the actual use of cognitive assistive devices To identifyimportant factors for considerations in the process of delivering assistive devices to persons with cognitive impairments caused by dementia

4. Unmet needs in dementia Selection of support areas based on literature and field study by VUmc among 231 PwD in the community & 321 carers. Most frequently mentioned areas of unmet needs: Area People with dementia Informal carers Memory 47% patients 55% carers Daily activities 25% patients 50% carers Communication 13% patients 23% carers Feelings of safety 12% patients 23% carers Reference: Van der Roest et al. Alzheimer Europe Congres, Estoril, 2007 (FRUX-project) CANE=Camberwell Assessment of Needs for the Elderly (Reynolds et al, 2000)

5. Focus in COGKNOW 4 areas of support Help people with dementia to • Remember • Maintain social contacts • Perform daily activities • Feel more safe

6. Development design Three iterative cycles User participatory approach • . Users: 45 people with dementia (GDS 3-5/MMSE>14) + 45 carers ± 12 professional carers 2006-2007 Workshops with PwD & carers (15 couples) Technical development Fieldtest #1 and Evaluation 2007-2008 Workshops with PwD & carers (15 couples) Fine tune technical development Fieldtest #2 and Evaluation Results of Field test #1 areinput to 2nd phase of Techn. development Results of Field test #2are input to 3rd phase of Techn. development 2008-2009 Workshops with PwD & carers (15 couples) Fine tune techn. development Fieldtest #3 and Evaluation

7. Evaluation strategy • Users perspective Insight in needs; evaluation of user friendliness, usefulness and (only in the third field test) impact on the COGKNOW areas of support, on autonomy and quality of life • Technical perspective Technical innovation, for instance integrated assistive technologies and use of context aware multi-modal reminders • Business perspective Check the viability of COGKNOW business opportunities • Research methods • Prescribed tasks, observations, semi-structured interviews, in-situ measurements (logging), diaries

8. First Prototype Functionalities On stationary screen and mobile • Support for memory • Day/time indication • Reminders for events • Find mobile • Support for social contact • Picture phone with address book • Support for activities • Media play back • Radio on/off • Support for feeling of safety • Safety warning (door open) • Easy emergency contact

9. Participants & Setting field test 1

10. Results user evaluation field test 1

11. Second prototype • Functionalities on four domains • On stationary screen and mobile • Support for memory • Reminders for events: text, icon, sound (repetition, • remotely controllable) + quarter hour clock • Day/time jndication (analogue or digital clock) • Find mobile • Support for social contact • Picture phone • with address book (more contacts, audiocall, less steps) • Support for activities • Activity assistance (making dinner) • Media play back • Radio on/off • Support for feeling of safety • Safety warning (front door/fridge door open) • Easy emergency contact (improved icon) • Navigation support outside • General • Personalisation • Easy interaction • Language

12. Participants & setting field test 2

13. Results user evaluation field test 2

14. Results user evaluation field test 2

15. Conclusions COGKNOW Day Navigator Overall • Judged as useful by PwDs and Carers, especially reminding function, picture dialling and safety function (warnings and Take me home), • Personalization of interaction was evaluated as important • Easy configuration and adaptation of the reminders would improve the usefulness • Most PwDs and carers found CDN easy to operate and easy to learn and understand • Suggestions: improved design, more concrete and clear icons, further develop multimodal way (voice and text) of interacting and personalization, resolve technical problems and offer a teaching intervention for PwDs to learn how to use the device on their own

16. Third prototype & testing Field test: March – May 2009 Evaluation on user friendliness, usefulness and impact on the four COGKNOW support domains, experienced autonomy and quality of life Analyses and results: June – July 2009 End of project 1 September 2009

17. Preliminary conclusions & discussion • Multidisciplinary teams are a critical success factor of user-centered approach. Having flexible dedicated multidisciplinary team members in the project is important. • Design activities are not focused only at finding solutions to predefined problems, but also at tracing and tackling new problems. • An iterative design allows for customization of the assistive device to the needs of persons with dementia • Persons with dementia are very well able to participate actively in a project that develops and evaluates an electronic assistive device

18. Read more about COGKNOW ? http://www.cogknow.eu/ Correspondence: fj.meiland@vumc.nl