Electronic assistance for community dwelling people with dementia; user-participatory development of a cognitive prosthetic device Alzheimer Europe 2009 Franka Meiland S. S ä venstedt, 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 FP IST-5

COGKNOW Consortium Sep Aug organisations in 8 countries

Aims Develop and evaluate a user-validated remotely configurable cognitive prosthetic device with associated services for people with mild dementia 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 identify important factors for considerations in the process of delivering assistive devices to persons with cognitive impairments caused by dementia

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% patients55% carers Daily activities25% patients50% carers Communication13% patients23% carers Feelings of safety12% patients23% 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)

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

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

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 Evaluation strategy Research methods Prescribed tasks, observations, semi-structured interviews, in-situ measurements (logging), diaries

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

Participants & Setting field test 1 Amsterdam (n=5) Belfast (n=5) Luleå (n=6) Total (n=16) Person with Dementia Age (mean) ,4 Gender 3 female 2 male 4 female 1 male 4 female 2 male 11 female 5 male Civil status 4 married 1 other 3 married 2 other 5 married 1 other 12 married 4 other Carer Age (mean) ,5 Gender 2 male 3 female 3 male 2 female 4 male 2 female 9 male 7 female Relation 4 spouse 1 other 3 spouse 2 other 4 spouse 2 other 11 spouse 5 other

Results user evaluation field test 1 Evaluation 4 functions RemindingSocial contact Picture dialling Activity Radio control, music player Safety Door sensor (limited testing) Usefulness PwD special events Carers also daily events Valued high by PwD and carers Difficulty relating usefulness to present situation Future usefulness high User friendliness Audibility good Size figures on home screen good, on mobile too small Advice: add sound signal to attract attention Generally good Easy to operate and learn how to use However, too many steps Help function confused with picture dialling Generally good Easy to operate Icons clear Music player and radio sometimes interfered Easy to understand

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

Participants & setting field test 2 Total n=13 (Amsterdam 5; Belfast 4; Luleå 4) PwD Mean 75,5 years 7 married 6 alone Carer Mean 65,5 years

Results user evaluation field test 2 Evaluation 4 functions RemindingSocial contact Picture dialling Activity Radio, music Safety User friendliness Easily understood Audibility good Repetition good Not stressfull Acknowledge- ment somewhat difficult (half confirmed) Day/time good Quarter hour clock too difficult Advise: text larger and coloured and vividly, agenda as calendar Generally good Easy to use Pictures easily recognized Low quality of sound handset Ringing too loud and too long Advise: Leave picture phone directory on screen; helps if other family members use phone too Generally good Enjoyable Easy to learn and understand Suggestion: improve sound, volume Activity assistance somewhat difficult Warnings: Easy to hear and see and understand Not stressful Help button: somewhat difficult for half of PwDs Take me home: easy to use with voice only Night lamp: inconvenient (1 case) Suggestion: change icon help button

Results user evaluation field test 2 Evaluation 4 functions RemindingSocial contact Picture dialling Activity Radio, music play back Safety UsefulnessPersonal reminders useful Suggestion: Easy adjustment by carer; overview of activities for a longer period (week/month) Valued high by PwD and carers Facilitates social contact Suggestion: Better phone receiver, more contacts in address book and numerals Valued high by PwD and carers Suggestion: possibility of adjustment to personal preferences and easy selection of music Satisfied with warnings Help button useful

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

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

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

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