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
COGKNOW Consortium Sep 2006 - Aug 2009
11 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% patients 55% carersDaily 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)
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 developmentFieldtest #1 and Evaluation
Workshops with PwD & carers (15 couples)
Fine tune technical developmentFieldtest #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
2006-2007
2007-2008
2008-2009
Three iterative cycles
Results of Field test #1 are input to 2nd phase of Techn. development
• Users perspectiveInsight 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 perspectiveCheck the viability of COGKNOW business opportunities
Evaluation strategy
Research methodsPrescribed 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) 65 71 70 68,4
Gender 3 female2 male
4 female1 male
4 female2 male
11 female 5 male
Civil status 4 married1 other
3 married2 other
5 married1 other
12 married 4 other
Carer
Age (mean) 59 64 59 60,5
Gender 2 male3 female
3 male 2 female
4 male 2 female
9 male 7 female
Relation 4 spouse1 other
3 spouse2 other
4 spouse2 other
11 spouse 5 other
Results user evaluation field test 1
Evaluation 4 functions
Reminding Social contactPicture dialling
ActivityRadio control, music player
SafetyDoor sensor
(limited testing)
Usefulness • PwD special events
• Carers also daily events
• Valued high by PwD and carers
• 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
Reminding Social 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
Reminding Social contact
Picture dialling
Activity
Radio,
music play back
Safety
Usefulness • Personal 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 NavigatorOverall• 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