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Electronic Care Centre for Caregivers ofPatients with Alzheimer's disease

Hippokratis Apostolidis1, Thrasyvoulos Tsiatsos1, KonstantinaKaragkiozi2, Tatiana Dimitriou3, Magdalini Tsolaki3

1 Department of Informatics, Aristotle University of Thessaloniki, Greece,2 Greek Association of Alzheimer Disease and Relative Disorders, Greece

3 Medical School, Aristotle University of Thessaloniki, Greece

tsiatsos@csd.auth.gr

Contents• Introduction• Caregivers of Alzheimer Patients requirements• ASPAD Project• Related Work• ASPAD Solution (Design, Technology,

Interventions)• Evaluation Activities• Evaluation Results• Conclusions

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Introduction• 2013: There were an estimated 44.4 million people

with dementia worldwide• 2030: 75.6 million (estimated)• 2050: 135.5 million (estimated)

3http://www.alz.co.uk/research/statistics

Caregivers’ problems and needs• Caregivers mainly face the problems such as

– psychological pressure in a daily basis,– lack of knowledge and/or training about caring the patients and– lack of knowledge about the consequences of dementia in patients’

behavior.

• Caregivers– need training about dementia and caregiving, and– need psychological support– usually are 24h/7d along with the patient and it is difficult to participate in

seminars and/or psychotherapeutic sessions

• Proposed solution:– Web based framework to provide distant support for caregivers who are not

able to participate in face to face sessions.

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The ASPAD Project• Augmentation of the Support of Patients suffering from Alzheimer’s

Disease and their caregivers

• ASPAD aims to provide a holistic non-pharmaceutical support of patientssuffering from Alzheimer’s Disease (AD) by augmenting the care of thepatients and services for the people affected and their families

• ASPAD services:– Cognitive tasks and cognitive exercises for patients suffering from AD

through web-based and Educational Robotics applications.– Physical exercises based on Greek traditional dances for patients with

dementia– Education and training for all the stakeholders through distance education

programs.– Remote psychological support of caregivers

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aspad.csd.auth.gr

Related work (1/3)• ADCarer.com

– Support using Cognitive Behavioral Therapy (CBT)– 9 weeks interventions– Significant reduction on the caregivers’ depression

and anxiety• Diapason program

– Information about AD diagnosis, symptoms,management

– Positive effects

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Related work (2/3)• Alzheimer’s Disease Support Center (ADSC)

– Internet-based educational programs to support thedementia caregivers

• Internet-Based Savvy Caregiver (IBSC)– To provide the caregivers with knowledge and skills

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Related work (3/3)

• AlzOnline, http://alzonline.phhp.ufl.edu/• ALZConnected, https://www.alzconnected.org/

Related work (conclusion)• Many relevant studies about internet-based

interventions and caregivers’ support– (+) Caregivers save time– (+) These interventions give the chance to the

caregiver to participate from his/her own place– (-) Caregivers’ limited experience with the Internet

services– (-) There are more drop-outs than the face-to-face

meetings (more than 30%)

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Motivation and main aim• To investigate novel distance learning

educational programs to reduce the caregiverburden

• To facilitate distance learning activities• To reduce the “didactical distance” between the

trainer and the trainees• To support the awareness about the emotional

status of the trainees• To inform the psychologist about the emotional

status of the caregivers10

ASPAD distant support program• ASPAD project organizes online seminars with

– 24 synchronous online sessions for 12 weeks (2heach). Subjects: dementia, different types ofdementia, epidemiology of dementia, heredity indementia, co morbidities, stages of dementia, thebehavioral and psychological issues in dementia,pharmaceutical treatment and non- pharmaceuticalinterventions

– 2 personal online sessions between a psychologistand a caregiver (1h each) for providing psychologicalsupport to the caregivers:

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ASPAD Model

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Technological infrastructure (1)• ASPAD platform is installed in two servers:

– Web Server that serves the asynchronous learning platform• Joomla content management system that is used for supporting the

management of the learning content• the Moodle learning management system that is used for supporting the

organization of the courses and the groups of caregivers• a PHP application that is used for monitoring the anxiety measurements

– Teleconference Server that serves videoconference and anxietymonitoring service

• OpenMeetings web-conferencing platform for supporting the real timedistant psychological support session as well as e-learning sessions

• Client side:– adobe flash compatible web browser– client java application installed (online physiological measurements)

• special client to collect stress level information from bio-feedback devices,attached to each caregiver

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Technological infrastructure (2)

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Bio-feedbackcomponent

[java]

ASPAD website[Joomla]

LMS[Moodle]

Database[MySQL]

LMS module

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http://openmeetingssrv.csd.auth.gr/moodle

Videoconference module

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http://openmeetingssrv.csd.auth.gr/moodle

Bio-feedback device• Applies three physiological

techniques– Galvanic Skin Response

(GSR)– The skin temperature– Heart Rate (HR)

measurement• Collects bio-signals from

human body using as lessobtrusive sensors as possible

• Physiological reactions tostressful situations areusually resulting in increasedGSR, decreased skintemperature and increasedHR

• Video

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Arduino

Remote awareness of caregivers’ anxiety level

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Arduino

ASPAD interventions: Domain• Caregivers in groups of maximum six (6) participants• 24 sessions -> every session has 2 lessons -> once a week -

> two hours– 6 sessions: dedicated to the definition of dementia, its types,

its main characteristics, the definition of Mild CognitiveImpairment (MCI), the epidemiology in dementia, theinheritance in dementia and the comorbidities.

– 12 sessions: refer to the behavioral and psychological problemsin dementia.

– 4 sessions: refer to the stages of dementia, the late stage ofdementia and ways to manage it.

– 2 (last) sessions: refer to the personal sessions that thepsychologist met with the caregivers one by one

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ASPAD interventions: Progress (1)• 39 caregivers separated in 7 groups• 34 females and 5 males• Drop-outs: ~20%• Age: 20 - 70 years old• All participants were primary caregivers of

patients suffering from dementia on moderateand severe stage.

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ASPAD interventions: Progress (2)• FAQs during the group sessions/lectures:

– What type of dementia my patient has?– Which are the stages of dementia?– How can I deal with some behavioral and psychological

problems that my patient has?– What more can I do in order to help him/her?– Are the drugs that my patient takes good? Should I try

something different?• FAQs during the private sessions:

– how to manage my patient– how to talk to my patient

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ASPAD interventions: Collaboration• The psychologist enforced the participants to talk

to each other:– they found it very helpful and expressed questions,

thoughts and experiences and so on

• Usability issues:– most of the participants didn’t have problems to use

ASPAD system

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System Evaluation: Goals

• ASPAD system usability

• caregivers’ satisfaction from their interaction withASPAD system

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System Evaluation: Instruments

• The Questionnaire for User Interface Satisfaction (QUIS)– System interface, overall reactions to the software, the power

of the system and the impression of the screens displayed.– System information, the use of terms, the position of messages

and error messages displayed.– The learning factors of the ASPAD system, like learning to

operate the system and exploring new features by trial anderror.

– ASPAD system capabilities, system speed and system reliability.– ASPAD system usability.

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Overall system interface

• Score of most answers between 7 - 10

System information

• Score of most answers between 8 - 10

Learning factors

• Score of most answers between 8 - 10

System capabilities

• Score of most answers between 8 - 10

System usability

• Score of most answers between 7 - 10

Conclusions – Future work

• Main results– Most of the participants found ASPAD platform highly usable– Most of the participants answered that they had a rich interactive

experience using ASPAD system

• Apply psycho-educational activities through ASPADplatform to more caregivers

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Thank you for your attention!Questions?

Contact:Thrasyvoulos Tsiatsos

E-mail: tsiatsos@csd.auth.gr

Home page: http://users.auth.gr/~tsiatsos/Department of Informatics, AUTH: http://www.csd.auth.gr

Multimedia lab: http://mlab.csd.auth.gr/ASPAD: http://aspad.csd.auth.gr

Acknowledgments

• This work is partly supported by the project “Augmentation of the Support of Patientssuffering from Alzheimer’s Disease and their caregivers (ASPAD/2875)”, which ismaterialized by the Special Account of the Research Committee at Aristotle University ofThessaloniki. The project is funded by the European Union (European Social Fund) andthe Ministry of Education, Lifelong Learning and Religious Affairs in the context of theNational Strategic Reference Framework (NSRF, 2007-2013).

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