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

In the current paper, a social gamified platform for people living with dementia and their live-in family caregivers, integrating a broader diagnostic approach and interactive interventions is presented. The CAREGIVERSPRO-MMD (C-MMD) platform constitutes a support tool for the patient and the informal caregiver - also referred to as the dyad - that strengthens self-care, and builds community capacity and engagement at the point of care. The platform is implemented to improve social collaboration, adherence to treatment guidelines through gamification, recognition of progress indicators and measures to guide management of patients with dementia, and strategies and tools to improve treatment interventions and medication adherence. Moreover, particular attention was provided on guidelines, considerations and user requirements for the design of a User-Centered Design (UCD) platform. The design of the platform has been based on a deep understanding of users, tasks and contexts in order to improve platform usability, and provide adaptive and intuitive User Interfaces with high accessibility. In this paper, the architecture and services of the C-MMD platform are presented, and specifically the gamification aspects. © 2018 Association for Computing Machinery.Peer ReviewedPostprint (author's final draft

A web-based platform for people with memory problems and their caregivers (CAREGIVERSPRO-MMD): Mixed-methods evaluation of usability

Background: The increasing number of people with dementia (PwD) drives research exploring Web-based support interventions to provide effective care for larger populations. In this concept, a Web-based platform (CAREGIVERSPRO-MMD, 620911) was designed to (1) improve the quality of life for PwD, (2) reduce caregiver burden, (3) reduce the financial costs for care, and (4) reduce administration time for health and social care professionals. Objective: The objective of this study was to evaluate the usability and usefulness of CAREGIVERSPRO-MMD platform for PwD or mild cognitive impairment (MCI), informal caregivers, and health and social care professionals with respect to a wider strategy followed by the project to enhance the user-centered approach. A secondary aim of the study was to collect recommendations to improve the platform before the future pilot study. Methods: A mixed methods design was employed for recruiting PwD or MCI (N=24), informal caregivers (N=24), and professionals (N=10). Participants were asked to rate their satisfaction, the perceived usefulness, and ease of use of each function of the platform. Qualitative questions about the improvement of the platform were asked when participants provided low scores for a function. Testing occurred at baseline and 1 week after participants used the platform. The dropout rate from baseline to the follow-up was approximately 10% (6/58). Results: After 1 week of platform use, the system was useful for 90% (20.75/23) of the caregivers and for 89% (5.36/6) of the professionals. When users responded to more than 1 question per platform function, the mean of satisfied users per function was calculated. These user groups also provided positive evaluations for the ease of use (caregivers: 82%, 18.75/23; professionals: 97%, 5.82/6) and their satisfaction with the platform (caregivers: 79%, 18.08/23; professionals: 73%, 4.36/6). Ratings from PwD were lower than the other groups for usefulness (57%, 13/23), ease of use (41%, 9.4/23), and overall satisfaction (47%, 11/23) with the platform (

Predeath Grief, Resourcefulness, and Perceived Stress Among Caregivers of Partners With Young-Onset Dementia

More than 200,000 Americans are currently diagnosed with young-onset dementia (YOD). YOD is dementia diagnosed prior to the age of 65. Most persons of YOD are cared for by their partners. Using the theoretical framework of Resilience Theory, this cross-sectional, correlational study examined the moderating effects of personal and social resourcefulness on the relationship between predeath grief and perceived stress among 104 YOD caregiving partners (life partners/spouses) using an online survey platform. Results indicated a large positive correlation between predeath grief and caregiver perceived stress (r = .65; p \u3c .001). Together predeath grief, personal resourcefulness and social resourcefulness explained 51.5% of the variance in perceived stress. Personal resourcefulness did not moderate the relationship. Social resourcefulness did positively moderate this relationship between predeath grief and perceived stress. These findings allow for a better understanding of the caregiving experience for a partner with YOD and creates opportunities for future research studies

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

Role of Artificial Intelligence (AI) art in care of ageing society: focus on dementia

open access articleBackground: Art enhances both physical and mental health wellbeing. The health benefits include reduction in blood pressure, heart rate, pain perception and briefer inpatient stays, as well as improvement of communication skills and self-esteem. In addition to these, people living with dementia benefit from reduction of their noncognitive, behavioural changes, enhancement of their cognitive capacities and being socially active. Methods: The current study represents a narrative general literature review on available studies and knowledge about contribution of Artificial Intelligence (AI) in creative arts. Results: We review AI visual arts technologies, and their potential for use among people with dementia and care, drawing on similar experiences to date from traditional art in dementia care. Conclusion: The virtual reality, installations and the psychedelic properties of the AI created art provide a new venue for more detailed research about its therapeutic use in dementia

Medical data processing and analysis for remote health and activities monitoring

Recent developments in sensor technology, wearable computing, Internet of Things (IoT), and wireless communication have given rise to research in ubiquitous healthcare and remote monitoring of human\u2019s health and activities. Health monitoring systems involve processing and analysis of data retrieved from smartphones, smart watches, smart bracelets, as well as various sensors and wearable devices. Such systems enable continuous monitoring of patients psychological and health conditions by sensing and transmitting measurements such as heart rate, electrocardiogram, body temperature, respiratory rate, chest sounds, or blood pressure. Pervasive healthcare, as a relevant application domain in this context, aims at revolutionizing the delivery of medical services through a medical assistive environment and facilitates the independent living of patients. In this chapter, we discuss (1) data collection, fusion, ownership and privacy issues; (2) models, technologies and solutions for medical data processing and analysis; (3) big medical data analytics for remote health monitoring; (4) research challenges and opportunities in medical data analytics; (5) examples of case studies and practical solutions

Optimising support for informal carers of the long-term disabled to enhance resilience and sustainability

Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. Executive summary People with severe and chronic disabilities represent a significant proportion of the population who require assistance to live in their own home and be a part of the community. In addition to assistance from the paid carer workforce, this assistance is provided by family, relatives or friends who are not paid or formally trained in the provision of care and support. These informal carers assist with a variety of tasks including activities of daily living, emotional care and support and accessing medical care and ongoing therapy to optimise independence. There are 2.7 million people in Australia who provide informal (unpaid) care to a person with a disability or long-term health condition, of which 770,000 provide the majority of care and support to people with a severe disability. Given their substantial contribution to care provision and the physical, emotional and other impacts of providing care, it is important to understand the experience of informal carers and address their support needs. In recent years, studies have elucidated the substantial effects of providing care on the psychological, physical, social and other impacts of providing care to a person with a long-term disability. There are a range of interventions to mitigate these impacts, which are provided in Australia through a variety of national and local government and nongovernment entities with varying efficacy. Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. This NTRI Forum aims to investigate effective strategies for providing support (excluding skills-related education and training, i.e. manual handling and transfers) to informal carers that can help to optimise their resilience, and the sustainability of the long-term disabled. An evidence review of literature identified 25 relevant reviews and primary studies and a further 16 ongoing primary studies. The overall results of reviews of carer support interventions were inconclusive, therefore firm conclusions regarding what works and doesn’t work cannot be made. However, evidence was reported as ‘good’ for educational and psycho-educational interventions, counselling and psychosocial interventions and multicomponent interventions; Evidence for care co-ordination and family support interventions was described as ‘promising’; Evidence for technology-based interventions was conflicting in the setting of Dementia, but more positive in the area of catastrophic injury; Evidence for respite care was described as ‘not strong’, and although benefits were reported, the importance of additional support strategies in conjunction with respite care was emphasised. Similarly, emerging positive evidence in favour of support groups was reported, however additional concurrent support strategies were recommended. Passive information dissemination alone was found to be ineffective. The review also outlined a range of factors to consider in interpreting this evidence and identified implications for practice and research

Emotional robots: principles and practice with PARO in Denmark, Germany and the UK

As societies age there will be a significant increase of those over 80 and a predicted increase in people with dementia. We know that loneliness increases with old age, and those living with dementia are at risk of social isolation. Also opportunities for sensory stimulation and engagement in pleasurable activities are reduced in old age. The question is what technologies can be used to extend the range of available interventions that can enhance well-being. Emotional robots have been developed for activity and therapeutic purposes. This article explores experiences of the emotional robot PARO in Denmark, Germany and UK, and provides principles of this robot as an activity or activity with a therapeutic purpose

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

Informal Caregivers and Psychosocial Support: Analysis of European Dementia Policy Documents

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