Electronic Care Centre for Caregivers of Patients with Alzheimer's disease

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1 Electronic Care Centre for Caregivers of Patients with Alzheimer's disease Hippokratis Apostolidis1, Thrasyvoulos Tsiatsos1, Konstantina Karagkiozi2, 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 1

2 Contents Introduction Caregivers of Alzheimer Patients requirements ASPAD Project Related Work ASPAD Solution (Design, Technology, Interventions) Evaluation Activities Evaluation Results Conclusions 2

3 Introduction 2013: There were an estimated 44.4 million people with dementia worldwide 2030: 75.6 million (estimated) 2050: million (estimated) 3

4 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. 4

5 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 patients suffering from Alzheimer s Disease (AD) by augmenting the care of the patients 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 aspad.csd.auth.gr 5

6 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 6

7 Related work (2/3) Alzheimer s Disease Support Center (ADSC) Internet-based educational programs to support the dementia caregivers Internet-Based Savvy Caregiver (IBSC) To provide the caregivers with knowledge and skills 7

8 Related work (3/3) AlzOnline, ALZConnected,

9 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%) 9

Motivation and main aim To investigate novel distance learning educational programs to reduce the caregiver burden To facilitate distance learning activities To reduce the didactical

10 Motivation and main aim To investigate novel distance learning educational programs to reduce the caregiver burden 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 caregivers 10

11 ASPAD distant support program ASPAD project organizes online seminars with 24 synchronous online sessions for 12 weeks (2h each). Subjects: dementia, different types of dementia, epidemiology of dementia, heredity in dementia, co morbidities, stages of dementia, the behavioral and psychological issues in dementia, pharmaceutical treatment and non- pharmaceutical interventions 2 personal online sessions between a psychologist and a caregiver (1h each) for providing psychological support to the caregivers: 11

12 ASPAD Model 12

13 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 anxiety monitoring service OpenMeetings web-conferencing platform for supporting the real time distant 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 13

14 Technological infrastructure (2) ASPAD website [Joomla] LMS [Moodle] Bio-feedback component [java] Database [MySQL] 14

15 LMS module 15

16 Videoconference module 16

using as less obtrusive sensors as possible Physiological reactions to stressful situations

17 Bio-feedback device Applies three physiological techniques Arduino Galvanic Skin Response (GSR) The skin temperature Heart Rate (HR) measurement Collects bio-signals from human body using as less obtrusive sensors as possible Physiological reactions to stressful situations are usually resulting in increased GSR, decreased skin temperature and increased HR Video 17

18 Remote awareness of caregivers anxiety level Arduino 18

19 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 Cognitive Impairment (MCI), the epidemiology in dementia, the inheritance in dementia and the comorbidities. 12 sessions: refer to the behavioral and psychological problems in dementia. 4 sessions: refer to the stages of dementia, the late stage of dementia and ways to manage it. 2 (last) sessions: refer to the personal sessions that the psychologist met with the caregivers one by one 19

20 ASPAD interventions: Progress (1) 39 caregivers separated in 7 groups 34 females and 5 males Drop-outs: ~20% Age: years old All participants were primary caregivers of patients suffering from dementia on moderate and severe stage. 20

21 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 21

22 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 22

23 System Evaluation: Goals ASPAD system usability caregivers satisfaction from their interaction with ASPAD system 23

24 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 and error. ASPAD system capabilities, system speed and system reliability. ASPAD system usability. 24

25 Overall system interface Score of most answers between 7-10

26 System information Score of most answers between 8-10

27 Learning factors Score of most answers between 8-10

28 System capabilities Score of most answers between 8-10

29 System usability Score of most answers between 7-10

30 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 ASPAD platform to more caregivers

31 Thank you for your attention! Questions? Contact: Thrasyvoulos Tsiatsos Home page: Department of Informatics, AUTH: Multimedia lab: ASPAD: 31

32 Acknowledgments This work is partly supported by the project Augmentation of the Support of Patients suffering from Alzheimer s Disease and their caregivers (ASPAD/2875), which is materialized by the Special Account of the Research Committee at Aristotle University of Thessaloniki. The project is funded by the European Union (European Social Fund) and the Ministry of Education, Lifelong Learning and Religious Affairs in the context of the National Strategic Reference Framework (NSRF, ). 32

An Integrated Intelligent Home Environment for the Provision of Health, Nutrition and Mobility Services to the Elderly. Date of delivery: August 2013

MOBISERV FP7 248434 An Integrated Intelligent Home Environment for the Provision of Health, Nutrition and Mobility Services to the Elderly Deliverable D8.6: MOBISERV Closing Workshop Proceedings Date of