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

This paper compares two methodological approaches derived from the EU Horizon 2020 funded projects CAREGIVERSPRO-MMD (C-MMD)1 and ICT4LIFE2. Both approaches were initiated in 2016 with the ambition to provide new integrated care services to people living with cognitive impairments, including Dementia, Alzheimer and Parkinson disease, as well as to their home caregivers towards a long-term increase in quality of life and autonomy at home. An outline of the disparities and similarities related to non-pharmacological interventions introduced by the two projects to foster treatment adherence was made. Both approaches have developed software solutions, including social platforms, notifications, Serious Games, user monitoring and support services aimed at developing the concepts of self-care, active patients and integrated care. Besides their differences, both projects can be benefited by knowledge and technology exchange, pilot results sharing and possible user's exchange if possible in the near future.Peer ReviewedPostprint (published version

Use of nonintrusive sensor-based information and communication technology for real-world evidence for clinical trials in dementia

Cognitive function is an important end point of treatments in dementia clinical trials. Measuring cognitive function by standardized tests, however, is biased toward highly constrained environments (such as hospitals) in selected samples. Patient-powered real-world evidence using information and communication technology devices, including environmental and wearable sensors, may help to overcome these limitations. This position paper describes current and novel information and communication technology devices and algorithms to monitor behavior and function in people with prodromal and manifest stages of dementia continuously, and discusses clinical, technological, ethical, regulatory, and user-centered requirements for collecting real-world evidence in future randomized controlled trials. Challenges of data safety, quality, and privacy and regulatory requirements need to be addressed by future smart sensor technologies. When these requirements are satisfied, these technologies will provide access to truly user relevant outcomes and broader cohorts of participants than currently sampled in clinical trials

Effectiveness of a Serious Game for Cognitive Training in Chronic Stroke Survivors with Mild-to-Moderate Cognitive Impairment: A Pilot Randomized Controlled Trial

Previous cognitive training games for stroke survivors required the close supervision of therapists. We aim to demonstrate the preliminary therapeutic effectiveness of Neuro-World, serious mobile games for cognitive training, in chronic stroke survivors with mild-to-moderate cognitive impairment without therapist supervision. For that, we conducted a randomized, controlled clinical trial at a single long-term care rehabilitation center with 50 stroke survivors in the chronic stage with mild-to-moderate cognitive impairment. Participants were randomized to standard medical care (n = 25) or standard medical care plus administration of Neuro-World (n = 25) over 12 weeks. A two-way mixed model ANOVA and Tukey’s post hoc tests identified significant differences in outcomes between the experimental and the control groups at post-intervention but not at baseline. Within the experimental group, there were statistically significant improvements in all the outcomes except for the language category of the Mini-Mental State Examination and Digit Forward Span. The improvements were clinically significant for the total Mini-Mental State Examination, Digit Forward Span, and Digit Backward Span. Within the control group, there were no improvements in any of the outcomes. The practice of Neuro-World led to significant improvements in cognitive function and marginal mitigation of depressive symptoms in chronic stroke survivors with mild-to-moderate cognitive impairment

Recommendations for the non-pharmacological treatment of apathy in brain disorders

Apathy is a common neuropsychiatric syndrome observed across many neurocognitive and psychiatric disorders. Although there are currently no definitive standard therapies for the treatment of apathy, non-pharmacological treatment (NPT) is often considered to be at the forefront of clinical management. However, guidelines on how to select, prescribe and administer NPT in clinical practice are lacking. Furthermore, although new Information and Communication Technologies (ICT) are beginning to be employed in NPT, their role is still unclear. The objective of the present work is to provide recommendations for the use of NPT for apathy, and to discuss the role of ICT in this domain, based on opinions gathered from experts in the field. The expert panel included 20 researchers and healthcare professionals working on brain disorders and apathy. Following a standard Delphi methodology, experts answered questions via several rounds of web-surveys, and then discussed the results in a plenary meeting. The experts suggested that NPT are useful to consider as therapy for people presenting with different neurocognitive and psychiatric diseases at all stages, with evidence of apathy across domains. The presence of a therapist and/or a caregiver is important in delivering NPT effectively, but parts of the treatment may be performed by the patient alone. NPT can be delivered both in clinical settings and at home. However, while remote treatment delivery may be cost and time-effective, it should be considered with caution, and tailored based on the patient's cognitive and physical profile and living conditions

Proceedings of Designing Self-care for Everyday Life. Workshop in conjunction with NordiCHI 2014, 27th October.

Managing chronic conditions can be challenging. People in such conditions, and the people around them, have to, for example: deal with symptoms, adapt to the resulting disability, manage emotions, and change habits to keep the condition under control. Self-care technologies have the potential to support self-care, however they often disregard the complexity of the settings in which they are used and fail to become integrated in everyday life.The present collection of papers forms the Proceedings of the Workshop “Designing Selfcare for Everyday Life” conducted last October 27th, 2014 in Helsinki, where 14 participants from 7 different countries spent the day discussing how to design self-care technologies that are in harmony with people’s everyday life. During the morning, discussions were driven by poster presentations focused on the participants’ work. In the afternoon, we engaged in aparticipatory design exercise focused on the self-care of Parkinson’s disease. Our discussions were driven by the experience of two people living with Parkinson’s that participated in our workshop. At the end of the exercise, each group presented the different insights, concepts and problems that each patient experiences in their everyday life with the disease. Last, we all engaged in a broader discussion with a mapping exercise of issues and challenges in relation to self-care.The contributions featured in the proceedings have been peer-reviewed by the members of the Workshop Program Committee and selected on the basis of their quality, alignment with the workshop theme, and the extent (and diversity) of their backgrounds in design. They express points of view of researchers from both Academia and Industry and provide relevant insights in the design and development use of technologies for self-care.We want to thank all the participants and co-authors for contributing to the Workshop. We are particularly grateful to the two patients, members of the Finnish Parkinson’s Association, who accepted to participate in the workshop and enabled researchers to get aperspective on the challenges of their lives. We also want to thank all the Programme Committee members for all their work during the reviewing process as well as the organisers of NordiCHI 2014 for providing useful facilities

Design process and preliminary psychometric study of a video game to detect cognitive impairment in senior adults

Introduction Assessment of episodic memory has been traditionally used to evaluate potential cognitive impairments in senior adults. Typically, episodic memory evaluation is based on personal interviews and pen-and-paper tests. This article presents the design, development and a preliminary validation of a novel digital game to assess episodic memory intended to overcome the limitations of traditional methods, such as the cost of its administration, its intrusive character, the lack of early detection capabilities, the lack of ecological validity, the learning effect and the existence of confounding factors. Materials and Methods Our proposal is based on the gamification of the California Verbal Learning Test (CVLT) and it has been designed to comply with the psychometric characteristics of reliability and validity. Two qualitative focus groups and a first pilot experiment were carried out to validate the proposal. Results A more ecological, non-intrusive and better administrable tool to perform cognitive assessment was developed. Initial evidence from the focus groups and pilot experiment confirmed the developed game’s usability and offered promising results insofar its psychometric validity is concerned. Moreover, the potential of this game for the cognitive classification of senior adults was confirmed, and administration time is dramatically reduced with respect to pen-and-paper tests. Limitations Additional research is needed to improve the resolution of the game for the identification of specific cognitive impairments, as well as to achieve a complete validation of the psychometric properties of the digital game. Conclusion Initial evidence show that serious games can be used as an instrument to assess the cognitive status of senior adults, and even to predict the onset of mild cognitive impairments or Alzheimer’s diseaseThe present work has been funded by the government of Galicia (Xunta de Galicia, Spain) to cover the travel expenses to participants’ homes during the pilot experiment (Ref.: 2016/236)S

Visualization and Interaction Technologies in Serious and Exergames for Cognitive Assessment and Training: A Survey on Available Solutions and Their Validation

Exergames and serious games, based on standard personal computers, mobile devices and gaming consoles or on novel immersive Virtual and Augmented Reality techniques, have become popular in the last few years and are now applied in various research fields, among which cognitive assessment and training of heterogeneous target populations. Moreover, the adoption of Web based solutions together with the integration of Artificial Intelligence and Machine Learning algorithms could bring countless advantages, both for the patients and the clinical personnel, as allowing the early detection of some pathological conditions, improving the efficacy and adherence to rehabilitation processes, through the personalisation of training sessions, and optimizing the allocation of resources by the healthcare system. The current work proposes a systematic survey of existing solutions in the field of cognitive assessment and training. We evaluate the visualization and interaction technologies commonly adopted and the measures taken to fulfil the need of the pathological target populations. Moreover, we analyze how implemented solutions are validated, i.e. The chosen experimental designs, data collection and analysis. Finally, we consider the availability of the applications and raw data to the large community of researchers and medical professionals and the actual application of proposed solutions in the standard clinical practice. Despite the potential of these technologies, research is still at an early stage. Although the recent release of accessible immersive virtual reality headsets and the increasing interest on vision-based techniques for tracking body and hands movements, many studies still rely on non-immersive virtual reality (67.2%), mainly mobile and personal computers, and standard gaming tools for interactions (41.5%). Finally, we highlight that although the interest of research community in this field is increasingly higher, the sharing of dataset (10.6%) and implemented applications (3.8%) should be promoted and the number of healthcare structures which have successfully introduced the new technological approaches in the treatment of their host patients is limited (10.2%)

Assistive technologies to address capabilities of people with dementia: from research to practice

Assistive technologies (AT) became pervasive and virtually present in all our life domains. They can be either an enabler or an obstacle leading to social exclusion. The Fondation Médéric Alzheimer gathered international experts of dementia care, with backgrounds in biomedical, human and social sciences, to analyse how AT can address the capabilities of people with dementia, on the basis of their needs. Discussion covered the unmet needs of people with dementia, the domains of daily life activities where AT can provide help to people with dementia, the enabling and empowering impact of technology to improve their safety and wellbeing, barriers and limits of use, technology assessment, ethical and legal issues. The capability approach (possible freedom) appears particularly relevant in person-centered dementia care and technology development. The focus is not on the solution, rather on what the person can do with it: seeing dementia as disability, with technology as an enabler to promote capabilities of the person, provides a useful framework for both research and practice. This article summarizes how these concepts took momentum in professional practice and public policies in the past fifteen years (2000-2015), discusses current issues in the design, development and economic model of AT for people with dementia, and covers how these technologies are being used and assessed

Development of an application for diagnosis, monitoring and rehabilitation of neurodegenerative diseases

The progress of healthcare over the last years led to an aging of the world population, increasing the prevalence of age-related diseases in the society, mainly neurodegenerative diseases. These pathologies currently affect more than 30 million people worldwide, and there is currently no cure for them. The high costs experienced by patients and their families are largely due to the individual monitoring performed by technicians. New technologies are providing alternatives for monitoring, diagnosis and rehabilitation of individuals with these diseases. This project includes the development of a web application which allows patients with neurodegenerative diseases to be monitored with less invasion and costs, enabling greater adherence. The application follows several examples from the literature for the construction of games, includes diagnostic assessments used in the medical field and promotes its use through gamification techniques. The construction of the web server used the Python language and the Flask framework because of the availability of useful modules, large supporting community and scalability. The software was specially designed for people with Parkinson’s disease, featuring a simple navigation between menus and an easy-to-use interface. The web application was named "Mentalist". The development of the application was followed by professional neurologists and the results obtained were guided by clinicians’ practice. According to these experts, the developed functionalities cover the most important aspects of diagnosis, monitoring and rehabilitation, making it a tool of high importance and applicability in daily clinical practiceA melhoria das condições de vida e dos cuidados de saúde nos últimos anos tem originado um envelhecimento da população mundial, aumentando a prevalência de doenças relacionadas com a idade. Neste grupo de doenças destacam-se as doenças neurodegenerativas, que afetam mais de 30 milhões de pessoas e não têm, atualmente, cura. Os elevados custos experienciados pelos pacientes e pelas suas famílias devem-se, em grande parte, ao acompanhamento individual realizado por técnicos. Novas tecnologias têm possibilitado alternativas para o acompanhamento, diagnóstico e reabilitação de indivíduos com estas doenças. Este projeto inclui o desenvolvimento de uma aplicação web que permite a monitorização de pacientes com menos invasão e custos, proporcionando uma maior adesão. A aplicação segue exemplos da literatura para a construção dos jogos, inclui questionários de diagnóstico utilizados no ramo médico e promove a sua utilização através de técnicas de gamificação. Foi utilizada a linguagem Python e o framework Flask para a construção do servidor devido à existência de módulos úteis, grande comunidade de desenvolvedores e escalabilidade. O software foi desenvolvido especialmente para pacientes com a doença de Parkinson, apresentando uma navegação simples entre menus e uma interface fácil de usar. A aplicação web foi denominada "Mentalist". O desenvolvimento da aplicação foi seguido por neurologistas profissionais e os resultados obtidos foram guiados pela experiência dos clínicos. De acordo com estes especialistas, as funcionalidades desenvolvidas contemplam os principais aspetos relativos ao diagnóstico, monitorização e reabilitação, tornando-a num instrumento de grande importância e aplicabilidade na prática clínica diári