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Self-management interventions and mutual assistance community services, helping patients with dementia and caregivers connect with others for evaluation, support and inspiration to improve the care experience

Deliverables

Pilot Operation Manual

This manual will contain: • General description of the study design and the pilot composition • Define the inclusion and exclusion criteria • User recruitment methodology best practices • Ethical documentation preparation (Informed Consent Forms, Information Sheet, authorisations for collection and processing of personal data, authorisations for sensor tracking, etc.) • Definition of the standard user assessment • Schedule of the user assessment along the pilot • Summary of the minimum data to be collected by CAREGIVERSPRO-MMD • Schedule for data collection • Schedule of for data analysis cycles

Usability study report

This report will summarize the feedback of the feasibility study, where 20 users (4 per pilot) will be provided with the CAREGIVERSPRO-MMD platform. They will be instructed on how to use the platform (as in normal pilot operation) but no previous assessment will be done and no data will be recorded from them except from the usability related data. The information collected during the weekly interaction with them will be reported in the deliverable and the extracted conclusions.

Dissemination Plan – second version

The second version of the Dissemination Plan will include all updated data regarding the respective activities and a detailed scheduling for the second period of the project.

Dissemination Plan – first version.

The Dissemination Plan will include (among others) a list of all communication tools utilized, the main dissemination activities and a respective time plan, as well as the main target audience groups.

– User feedback and usability report

This report will presents the outcomes of the assessments on how users interacted with CAREGIVERSPRO-MMD platform in order to see how user behaviour and interaction affect CAREGIVERSPRO-MMD efficacy. Improvements performed in the platform on the basis of these results will be presented if any. A summary of the user satisfaction survey and the user feedback and usability surveys will also be outlined.

Customisation guidance document - CAREGIVERSPRO-MMD 2nd version

This report will summarize the outcomes of tasks T2.1 and new developments in posterior tasks in terms of user interface adaptations and functionality representation for the different users, based on the usability studies performed. This second version will include the experiences collected during the first phase of the pilot.

Customisation guidance document for CAREGIVERSPRO-MMD platform Screening and Interventions services

This report presents a technical manual for the configuration and manipulation of screening and intervention contents, taking into consideration the importance of representing the clinical, social and behavioural data in a meaningful way so that can be used by the health and social care professionals to better manage their patients’ care and evaluate CAREGIVERSPRO-MMD impact

Data Management Plan - first version

The Data Management Plan will be a comprehensive document that will cover the entire data management life cycle even beyond the end of the project. This deliverable will describe all the procedures and strategies to be issued in order to manage all the research data involved in the project: confidentiality and privacy management, anonymisation, access rights, legal compliance, etc. The present deliverable will be a preliminar version.

Target Group Definition

Report detailing the different target group composition, especially in the perspective of piloting, providing insight also to the business plan. This report will elaborate for instance the strategy of identification/definition of the target groups, the channel to map and engage them, the scenario definition up to the customer profiling.

PACT Analysis and Focus group reports

In this deliverable will be reported the outcomes on user-centred design analysis, using concepts of design-for-all and PACT analysis. The results of the focus groups and interviews with users to adapt and improve the platform will also be reported.

Dementia and psychiatric comorbidity symptoms assessment handbook

Report including a thorough review of the state of the art on dementia and psychiatric comorbidity symptoms with a relation of the most used validated scales to assess them. This review will be performed from a multidisciplinary and interdisciplinary point of view: clinical, psychological, behavioural and social. Identification of symptoms will be intended for both individuals as well as the related caregiver (professional or not).

Final Pilot analysis report

This report presents the results of the full analysis of the data collected during the whole pilot in terms of progress/ performance indicators (Table 3.2c: Measurable Project Outcome Indicators) that capture changes in costs, treatment adherence, QoL, well-being for both patients and carers, cognitive impairment evolution for patients, etc

Mid-Pilot preliminary analysis report

This report presents the results of the preliminar analysis of the data collected at mid-pilot stage in terms of progress/ performance indicators (Table 3.2c: Measurable Project Outcome Indicators) that capture changes in costs, treatment adherence, QoL, well-being for both patients and carers, cognitive impairment evolution for patients, etc

Customisation guidance document – CAREGIVERSPRO-MMD 1st version

This report will summarize the outcomes of tasks T2.1 and new developments in posterior tasks in terms of user interface adaptations and functionality representation for the different users, based on the usability studies performed.

Data Management Plan - interim version

The Data Management Plan will be a comprehensive document that will cover the entire data management life cycle even beyond the end of the project. This deliverable will describe all the procedures and strategies to be issued in order to manage all the research data involved in the project: confidentiality and privacy management, anonymisation, access rights, legal compliance, etc. The present deliverable will be a mid project updated and more mature version.

Data Management Plan - final version

The Data Management Plan will be a comprehensive document that will cover the entire data management life cycle even beyond the end of the project. This deliverable will describe all the procedures and strategies to be issued in order to manage all the research data involved in the project: confidentiality and privacy management, anonymisation, access rights, legal compliance, etc. The present deliverable will be the final version including all the steps and considerations taken along the project.

Social Media Plan

The Social Media Plan (SMP) supports the Consortium in building, sharing with the team, and documenting a top down Social Media Strategy. The SMP will include: goals, target audience, core topics, editorial calendar, influencer engagement, forecast, and measurement in each community for each experiments’ country. The SMP will include a communications plan/policy that proactively addresses the use of social media and potential issues. Content of the SMP will be: • Target audience. • Educational objectives and explicit consideration of the function of the CAREGIVERSPRO-MMD platform such as degrees of access and interactivity planned. • Level of privacy and security required. • Issues of medical and social advice and redirection of patients/caregivers to appropriate venues. • Plans to deal with adverse events, including spam, negative comments, complaints, and unprofessional behaviour.

Accessibility Report

This deliverable will report on the conditions that affect the ability and confidences of CAREGIVERSPRO-MMD end-users and person with mild cognitive impairment or mild to moderate dementia to use the CAREGIVERSPRO-MMD platform. These conditions will include disease-specific ones like confusion, memory loss, etc., and generic ones mainly related to the older age like decreased eyesight or hearing impairment and the MMSE severity scale (cognitive impairment, Mild dementia, moderate dementia). We will add user characteristics such as culture, socioeconomic and educational level. We will also list the expected impact of each condition on use of CAREGIVERSPRO-MMD and adaption measure to improve accessibility.

Ethical Approval Report

This report will include the ethical approval documents of all the pilot sites and all the information provided to the ethical committees in the procedure.

CAREGIVERSPRO-MMD social media accounts

Pages/ Accounts will be launched to the most widespread social media networks – i.e. Facebook, Twitter, LinkedIn.

CAREGIVERSPRO-MMD Web Portal

The CAREGIVERSPRO-MDD Web Portal will serve as a single point of access for all stakeholders interested in the project. The portal will integrate, promote and communicate latest evolutions on CAREGIVERSPRO-MDD findings, activities and events including all project related publishable reports. The web portal will be updated regularly.

450 CAREGIVERSPRO-MMD enabled tablets PCs

In this task all the tablet PCs to be provided to the end users will be prepared and properly formated including the CAREGIVERSPRO-MMD platform ready to use in a simple and intuitive way.

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Publications

Difficultés de recrutement de dyades « aidant-aidé » dans le protocole CAREGIVERSPRO-MMD portant sur les nouvelles technologies adaptées aux patients présentant des troubles neurocognitifs et à leurs aidants

Author(s): H. LINGIAH; L.MALHERBE; M.BERARD; T. SIMON; N.KADRI; A.BOUNACER; I.LANDRIN
Published in: Journées Annuelles de la Société Française de Gérontologie et de Gériatrie, Issue 11, 2018
DOI: 10.5281/zenodo.2613642

Développement d'une plateforme digitale intelligente pour soutenir les patients atteints de maladie d'Alzheimer et leurs aidants

Author(s): BERARD Marie; BOUNACER Ali; LANDRIN Isabelle; MALHERBE Laetitia; KADRI Nadir; TOUFLET Myriam; SIMON Thibault
Published in: Congrès des Unités de Soins, d'évaluation et de prise en charge Alzheimer, Issue 12, 2016
DOI: 10.5281/zenodo.2936815

CAREGIVERSPRO-MMD: A European platform to support people living with dementia and their caregivers

Author(s): Zafeiridi, P.; Dunn, R.; Wolverson, E.; Paulson, K.
Published in: 26th Alzheimer Europe conference, 2016
DOI: 10.5281/zenodo.826713

Training people with dementia and their caregivers in the use of a web-based support tool: Lessons learned

Author(s): Kate Cunnah; Emma Wolverson; Rosie Dunn; David Howe; Kevin Paulson; Rebecca Platt; Jonathan Thorpe; Caroline White
Published in: 28th Alzheimer Europe conference, 2018
DOI: 10.5281/zenodo.2994359

CAREGIVERSPRO-MMD: An online platform to support people living with dementia and their carers – UK pilot update.

Author(s): Emma Wolverson; Rosie Dunn; David Howe; Kate Cunnah; Rebecca Platt; Jonathan Thorpe; Caroline White; Kevin Paulson
Published in: 28th Alzheimer Europe conference, 2018
DOI: 10.5281/zenodo.2994639

Engagement of people with cognitive impairment and their carers in online games –observations from the CAREGIVERSPRO-MMD study

Author(s): David Howe; Jonathan Thorpe; Rosie Dunn; Kate Cunnah; Rebecca Platt; Caroline White; Paraskevi Zafeiridi; Konstantinos Votis; Ioannis Pakiokas; Dimitrios Tzovaras; Kevin Paulson; Emma Wolverson
Published in: 28th Alzheimer Europe conference, Issue 21, 2018
DOI: 10.5281/zenodo.2994013

A Gamification Engine Architecture for Enhancing Behavioral Change Support Systems

Author(s): Evdoxia Eirini Lithoxoidou, Ioannis Paliokas, Ioannis Gotsos, Stelios Krinidis, Athanasios Tsakiris, Konstantinos Votis, Dimitrios Tzovaras
Published in: Proceedings of the 11th PErvasive Technologies Related to Assistive Environments Conference on - PETRA '18, 2018, Page(s) 482-489
DOI: 10.1145/3197768.3201561

Effectiveness of technology-based interventions for People with Dementia (PwD)

Author(s): Dunn, R.; Zafeiridi, P.; Wolverson, E.; Paulson, K.
Published in: 26th Alzheimer Europe conference, 02016
DOI: 10.5281/zenodo.826063

Gamification in Social Networking: A Platform for People Living with Dementia and their Caregivers

Author(s): Paliokas Ioannis; Tzallas Alexandros; Katertsidis Nikolaos; Votis Konstantinos; Tzovaras Dimitrios
Published in: 17th IEEE International Conference on BioInformatics and BioEngineering, 02017
DOI: 10.5281/zenodo.2994967

Two examples of online eHealth platforms for supporting people living with cognitive impairments and their caregivers

Author(s): Vassilis Solachidis, Ioannis Paliokas, Nicholas Vretos, Konstantinos Votis, Ulises Cortés, Dimitrios Tzovaras
Published in: Proceedings of the 11th PErvasive Technologies Related to Assistive Environments Conference on - PETRA '18, 2018, Page(s) 449-454
DOI: 10.1145/3197768.3201556

Evaluation of benefits of the CAREGIVERSPRO-MMD platform giving support and assistance to people living with dementia and their primary caregiver

Author(s): Catena, J.; Rovira, E.; Pardo, C.; Martinez, M.; Riera, C.; Quintana, M.; Ruiz, J.; Girones, X.
Published in: 23rd National Congress of the Spanish Psychogeriatrics Society, Issue 15, 2017
DOI: 10.5281/zenodo.826728

Consulting end-users in the design and usability of CAREGIVERSPRO-MMD: An internet based support tool designed for people with dementia and their caregivers

Author(s): Dunn, R.; Zafeiridi, P.; Wolverson, E.; Paulson, K.
Published in: 26th Alzheimer Europe conference, Issue 13, 2016
DOI: 10.5281/zenodo.826054

Developing a web-based platform for people living with dementia and their caregivers: a user-participatory study

Author(s): Dunn, R.; Zafeiridi, P.; Wolverson, E.; Paulson, K.; White, C.
Published in: 32nd International Conference of Alzheimer’s Disease International, Issue 13, 2017, Page(s) 634
DOI: 10.5281/zenodo.826743

Une plateforme digitale intelligente pour aider les patients atteints de maladie d'Alzheimer et soutenir leurs aidants

Author(s): BERARD Marie; MALHERBE Laetitia; SIMON Thibaut; TOUFLET Myriam; BOUNACER Ali; KADRI Nadir; LANDRIN Isabelle
Published in: 36è Journées Annuelles de la Société Française de Gérontologie et de Gériatrie, Issue 16, 2016
DOI: 10.5281/zenodo.2935689

The effectiveness of web-based interventions on dementia caregivers

Author(s): Zafeiridi, P.; Dunn, R.; Wolverson, E.; Paulson, K.
Published in: 26th Alzheimer Europe Conference, Issue 15, 2016
DOI: 10.5281/zenodo.826045

Investigating the understanding of technology use for people with dementia and caregivers: an exploratory study

Author(s): ZAFEIRIDI Paraskevi, DUNN Rosie, PAULSON Kevin, WOLVERSON Emma, THORPE Jonathan
Published in: 27th Alzheimer Europe Conference, 2017

Exploring the effect of early-stage dementia on spousal relationship for people with dementia and caregivers

Author(s): ZAFEIRIDI Paraskevi, DUNN Rosie, WOLVERSON Emma, PAULSON Kevin, WHITE Caroline
Published in: 27th Alzheimer Europe Conference, 2017

ETUDE EUROPEENNE CAREGIVERSPRO-MMD : PROFIL DES PATIENTS EN FRANCE

Author(s): L. MALHERBE1, H. LINGIAH1,2, T. SIMON2, M. BERARD1, L. MALHERBE1, A. BOUNACER3, N. KADRI1, I. LANDRIN1
Published in: Journées Annuelles de la Société Française de Gérontologie et de Gériatrie, 2018

Designing a gamified social platform for people living with dementia and their live-in family caregivers

Author(s): A. T. Tzallas, N. Katertsidis, K. Glykos, S. Segkouli, K. Votis, I. Paliokas, D. Tzovaras, C. Barrué, U. Cortés
Published in: PETRA '18 Proceedings of the 11th PErvasive Technologies Related to Assistive Environments Conference, Issue 476-481, 2018

Online games for people with memory problems and their carers– observations from CAREGIVERSPRO-MMD

Author(s): PAULSON Kevin, WOLVERSON Emma, DUNN Rosie, THORPE Jonathan, ZAFEIRIDI Paraskevi, HOWE David, OXTOBY Katie, WHITE Caroline, PLATT Rebecca, VOTIS Konstantinos, PAKIOKAS Ioannis, TZOVARAS Dimitrios
Published in: 28th Alzheimer Europe Conference, Issue PO.5.15, 2018

Etude européenne CAREGIVERSPRO-MMD portant sur les nouvelles technologies dédiées au soutien des personnes ayant une maladie d'Alzheimer et apparentée et leurs aidants. Profil des aidants en France

Author(s): L. MALHERBE, H. LINGIAH, T. SIMON, M. BERARD, A. BOUNACER, N. KADRI, I. LANDRIN
Published in: 38th national congress of the Société Française de de Gériatrie et Gérontologie, 2018

Health Recommender System design in the context of CAREGIVERSPRO-MMD Project

Author(s): L. Oliva-Felipe, C. Barrue, A. Cortes, E. Wolverson, M. Antomarini, K. Votis, I. Paliokas, U. Cortes
Published in: PETRA '18 Proceedings of the 11th PErvasive Technologies Related to Assistive Environments Conference, 2018, Page(s) 462-469

User-participatory development and evaluation of a tablet computer based social networking platform CAREGIVERSPRO-MMD

Author(s): PAULSON Kevin, WOLVERSON Emma
Published in: 27th Alzheimer’s Europe Conference, 2017

Online Activity Patterns of Social Network Users who are at Risk of Cognitive Decline

Author(s): Paliokas I., Katertsidis N., Glykos K., Tzallas A., Votis K., Tzovaras D.
Published in: 3rd Mediterranean Conference on Neurodegenerative Diseases (MeCoND), 2019

Communication between people with memory loss and carers on a closed online social network: A theoretical thematic analysis using Seligman’s PERMA model of wellbeing

Author(s): PLATT Rebecca, WOLVERSON Emma, DUNN Rosie, HOWE David, OXTOBY Katie, THORPE Jonathan, PAULSON Kevin, WHITE Caroline
Published in: 28th Alzheimer Europe Conference, Issue PO.2.20, 2018

Development of an online platform (CAREGIVERSPRO-MMD) based on social networking and gamification for people living with dementia and their caregivers

Author(s): Tzallas A., Katertsidis N., Paliokas I., Glykos K., Votis K., Tzovaras D.
Published in: 3rd Mediterranean Conference on Neurodegenerative Diseases (MeCoND), 2019

Consulting end-users in the design and usability of CAREGIVERSPRO-MMD: An internet based support tool designed for people with dementia and their caregivers

Author(s): Dunn, R., Zafeiridi, P., Wolverson, E., & Paulson
Published in: Poster in 26th Alzheimer Europe conference, Issue PO3.29 November 2016, 2016

CAREGIVERSPRO-MMD: A European platform to support people living with dementia and their caregivers

Author(s): Zafeiridi P., Dunn R., Wolverson E., Paulson K.
Published in: Oral presentation in 26th Alzheimer Europe Conference, Issue November 2016, 2016

Effectiveness of technology-based interventions for People with Dementia (PwD)

Author(s): Dunn, R., Zafeiridi, P., Wolverson, E., & Paulson
Published in: Poster in 26th Alzheimer Europe conference, Issue PO3.28 November 2016, 2016

The effectiveness of web-based interventions on dementia caregivers.

Author(s): Zafeiridi P., Dunn R., Wolverson E., Paulson K.
Published in: Poster in 26th Alzheimer Europe Conference, Issue PO3.82 November 2016, 2016

Usability study of a web-based intervention to support people living with dementia (PLWD) and their caregivers

Author(s): Zafeiridi P., Dunn R., Paulson K., Wolverson E., White C. and CAREGIVERSPRO-MMD
Published in: Oral presentation in 32nd International Conference of Alzheimer’s Disease International, Issue April 2017, 2017, Page(s) 104

Developing a web-based platform for people living with dementia and their caregivers: A user-participatory study.

Author(s): Zafeiridi P., Dunn R., Paulson K., Wolverson E., White C. and CAREGIVERSPRO-MMD
Published in: 32nd International Conference of Alzheimer’s Disease International, Issue Poster presentation in 32nd International Conference of Alzheimer’s Disease International, 2017

Evaluation of benefits of the CAREGIVERSPRO-MMD platform giving support and assistance to people living with dementia and their primary caregiver. 

Author(s): Catena, J., Rovira, E., Pardo, C., Martinez, M., Riera, C., Quintana, M., Ruiz, J., Girones, X.
Published in: 23rd National Congress of the Spanish Psychogeriatrics Society, 2017

Evaluating the CAREGIVERSPRO-MMD platform for supporting people with memory problems and caregivers: A usability study

Author(s): Zafeiridi, P.; Paulson, K.; Wolverson, E.; White, C.; Dunn, R.; Antomarini, M.; Cortés, U.; Barruè, C.; Paliokas, I.; García, X.G.; Landrin-Dutot, I.; Malherbe, L.
Published in: JMIR Research Protocols, Issue 8, 2019, ISSN 1929-0748
DOI: 10.5281/zenodo.825776

A Web-Based Platform for People with Memory Problems and Their Caregivers (CAREGIVERSPRO-MMD): Mixed-Methods Evaluation of Usability

Author(s): P. Zafeiridi, K. Paulson, R. Dunn, E. Wolverson, C. White, J. A. Thorpe, M. Antomarini, F. Cesaroni, F. Scocchera, I. Landrin-Dutot, L. Malherbe, H. Lingiah, M. Bérard, X. Gironès, M. Quintana, U. Cortés, C. Barrué, A. Cortés, I. Paliokas, K. Votis, D. Tzovaras,
Published in: JMIR Formative Research, Issue Vol.2, Issue 1, e4, 2018, Page(s) 16, ISSN 2561-326X

CAREGIVERSPRO-MMD: community services, helping patients with dementia and caregivers connect with others for evaluation, support and to improve the care experience

Author(s): Barrué C., Cortés A., Cortés U., Tétard F., Gironès X.
Published in: Computación y Sistemas, Issue Vol 21, No 1 2017, 2017, Page(s) 23-33, ISSN 2007-9737
DOI: 10.13053/CyS-21-1-2580

"Technology for Dementia: A Guide for Everyday Living Edited by Arlene Astell, Sarah Smith and Philip Joddrell "" "

Author(s): Emma Wolverson, Caroline White and Rosie Dunn
Published in: 2019