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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

Periodic Reporting for period 2 - CAREGIVERSPRO-MMD (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)

Reporting period: 2017-07-01 to 2019-04-30

CAREGIVERSPRO-MMD project aims to build a digital platform focusing on people living with dementia and their caregivers, considering this “dyad” as the unit of care and offering both a variety of advanced, individually tailored services that will improve the quality of their lives and enable them to live well in the community for as long as possible.
Accessible through friendly and easy-to-use interfaces for mobile phones, tablets and web browsers, the services of the CAREGIVERSPRO-MMD platform will include social networking with other people living with dementia, caregivers and clinicians, clinical and psychological screening, personalised care plan and educational interventions tailored to each user’s symptoms, medication reminder system and reporting to doctors and medical staff about treatment adherence level and other important clinical info. In order to enhance the involvement of end-users, gamification concepts and techniques such as storyboard characters, fun elements and rewarding schemes will be used.
The CAREGIVERSPRO-MMD platform offers multiple benefits for its users, such as personalised care plans combining medication and behavioural treatments for both people living with dementia and their caregivers, reduction of stress and burn-out phenomena of caregivers, discrete and constantly available monitoring of people living with dementia allowing fast adjustments to their care plan, efficient data collection of people living with dementia and caregivers by healthcare professionals, decision support for effective care plans and preventive interventions, as well as social networking. For the overall healthcare system, the adaptation of solutions such as the CAREGIVERSPRO-MMD platform is expected to contribute to the reduction of hospitalisations of people living with dementia and their caregivers, through delaying the need for entering care homes, reducing in this way the costs of care.
In order to demonstrate the CAREGIVERSPRO-MMD benefits for users and to prepare for the sustainable pan- European roll out of the platform, 4 large scale pilots will be carried out for 18 months in Spain, France, Italy and United Kingdom and several workshops will be organised throughout Europe, as well as a major conference, until the end of the project.
The work performed during this project has focused on the development, launch and piloting of the CAREGIVERSPRO-MMD platform as well as the achievement of the high-level objectives summarised in the following bullet points:
• Identification of dementia and psychiatric comorbidity symptoms
• Identification of relevant conditions for usability
• Defining the screening and intervention strategy
• Defining and executing the strategy for the PACT analysis
• Elicitation of requirements of the platforms’ next version
• Development of the new components and integration APIs
• Implementation of the first version of the Gamification engine including the front-end game masters environment
• Definition of the content recommendation module
• Preparation of the study protocol and the pilot methodology
• Preparing and engaging the ethical approval in the different pilot committees
• Defining the Social Media Plan
• Launch of the project’s social media accounts and the project website
• Preparation of the data management plan first and second versions and continuous updates
• Development of the first and second version of the Dissemination Plan
• Development of the initial version of the Business Plan as well as of an updated version of it
• Survey of the regulatory framework
• Evaluating the platform with the Advisory Board in order to get their approval for pilot start
• Perform the participant enrolment process following the clinical protocol
• Distribution of the 450 tablets among the participants
• Starting the pilot
• Identification of technical issues and focusing development efforts in fixing bugs
• Progressive improvement of usability following users' requests
• Implementation of new platform features under request
• Implementation of the interventions and publication through the platform, creating hundreds of contents distributed on a daily basis on the platform news feed
• Performing the pilot follow-up and periodic screening sessions
• Installation and technical validation of the online user’s activity monitoring platform
• Data collection during the pilot studies and analysis of the results
• Definition of the online activity monitoring strategy and tools
• Technical validation of the overall solution
• Implementation of the information visualisation and reporting service
• Re-definition of the content recommendation module
• Preparation of the post-pilot usability study
• Continuous update of project social media and website with relevant news
• Preparation of various dissemination material (flyers, leaflet, poster, powerpoint presentation, short video) to fit the dissemination needs of each phase of the project
• Presentation of C-MMD in various scientific and business events
• Organisation of C-MMD dedicated workshops and final event
• Preparation of a significant number of scientific publications
• Synergies with other EU projects with similar scope
The technical progress and the piloting of the CAREGIVERSPRO-MMD platform have modelled a sophisticated ICT tool that proposes several solutions that combined mean a step forward of the state of the art in ICT social tools for dementia management.
• The proposed gamification features that have been already identified by the C-MMD project consists significant of progress beyond the state of the art, especially in the area of dementia and related disorders.
• The integration of clinical reporting mechanisms (user feedback, serious gaming interventions, questionnaires, etc.) but also the close follow-up of the user interaction with the C-MMD platform provides updated information on the dyad situation being able to provide specific clinical or social tailored support and reinforce medical and social knowledge of experts in multiple ways (i.e. the concept of dyad and the dementia ecosystem) and consequently contribute to developing or maintaining effective policies and programs to address the needs of people living with cognitive impairment and their carers.
• The clear direction towards personalisation and customisation of services and interventions is an important milestone. The possibility that the platform provides a service tailored and centred on their clinical and social needs is significant and makes the difference with other practices or solutions or interventions.
The opportunity to test an ICT tool like CAREGIVERSPRO-MMD has provided many useful quantitative and qualitative information that can be compared to other previous studies and provides insights of the potential of ICT tools for dementia management and support, especially for the caregivers and the health and social professionals.
Furthermore, in the different dissemination meetings attended the Consortium has identified a potential reutilisation of the C-MMD platform to support the progress of other kinds of mental health diseases that patients and caregivers could benefit from. This fact widens up the potential market of the resulting product and the socio-economic impact as well as its potential integration/ complementarity with other platforms and solutions for the management of the health and care profile of patient (e.g. EHR platform).
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