A Health Monitoring Application to Support Informal Caregivers of People with Cognitive Impairment

Informal caregivers of people with cognitive impairment are often concerned about the health and wellbeing of their loved ones, leading to frequent care-related visits, check-ups, and conversations. Results from focus groups we held in daily care showed a strong need for support in terms of information about the health and wellbeing of the person with cognitive impairment (PwCI). The health monitoring application developed in this study, called HELMA, aims to offer a solution by monitoring the health and wellbeing of the PwCI in the long term and informing the informal caregivers. HELMA is an eHealth application that uses short frequent online monitoring questions to provide informal caregivers with information about the following health and wellbeing domains: physical; mental; social; and environmental. The next step is to evaluate HELMA on a large scale with end-users in daily practice

Feasibility-Usability Study of a Tablet App Adapted Specifically for Persons with Cognitive Impairment—SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia)

Population ageing within Europe has major social and economic consequences. One of the most devastating conditions that predominantly affects older people is dementia. The SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia) project aims to develop and test a health application specifically designed for people with mild dementia. The aim of this feasibility study was to evaluate the design of the SMART4MD protocol, including recruitment, screening, baseline examination and data management, and to test the SMART4MD application for functionality and usability before utilization in a full-scale study. The feasibility study tested the protocol and the app in Spain and Sweden. A total of nineteen persons with cognitive impairment, and their informal caregivers, individually performed a task-based usability test of the SMART4MD app model in a clinical environment, followed by four-week testing of the app in the home environment. By employing a user-centered design approach, the SMART4MD application proved to be an adequate and feasible interface for an eHealth intervention. In the final usability test, a score of 81% satisfied users was obtained. The possibility to test the application in all the procedures included in the study generated important information on how to present the technology to the users and how to improve these procedures

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

Examining the benefits and harms of Alzheimer's disease screening for family members of older adults: study protocol for a randomized controlled trial

BACKGROUND: Multiple national expert panels have identified early detection of Alzheimer's disease and related dementias (ADRD) as a national priority. However, the United States Preventive Services Task Force (USPSTF) does not currently support screening for ADRD in primary care given that the risks and benefits are unknown. The USPSTF stresses the need for research examining the impact of ADRD screening on family caregiver outcomes. METHODS: The Caregiver Outcomes of Alzheimer's Disease Screening (COADS) is a randomized controlled trial that will examine the potential benefits or harms of ADRD screening on family caregivers. It will also compare the effectiveness of two strategies for diagnostic evaluation and management after ADRD screening. COADS will enroll 1800 dyads who will be randomized into three groups (n = 600/group): the 'Screening Only' group will receive ADRD screening at baseline and disclosure of the screening results, with positive-screen participants receiving a list of local resources for diagnostic follow-up; the 'Screening Plus' group will receive ADRD screening at baseline coupled with disclosure of the screening results, with positive-screen participants referred to a dementia collaborative care program for diagnostic evaluation and potential care; and the control group will receive no screening. The COADS trial will measure the quality of life of the family member (the primary outcome) and family member mood, anxiety, preparedness and self-efficacy (the secondary outcomes) at baseline and at 6, 12, 18 and 24 months. Additionally, the trial will examine the congruence of depressive and anxiety symptoms between older adults and family members at 6, 12, 18 and 24 months and compare the effectiveness of two strategies for diagnostic evaluation and management after ADRD screening between the two groups randomized to screening (Screening Only versus Screening Plus). DISCUSSION: We hypothesize that caregivers in the screening arms will express higher levels of health-related quality of life, lower depressive and anxiety symptoms, and better preparation for caregiving with higher self-efficacy at 24 months. Results from this study will directly inform the National Plan to Address Alzheimer's Disease, the USPSTF and other organizations regarding ADRD screening and early detection policies

INLIFE - independent living support functions for the elderly : technology and pilot overview

In this paper, we present the European H2020 project INLIFE (INdependent LIving support Functions for the Elderly). The project brought together 20 partners from nine countries with the goal of integrating into a common ICT platform a range of technologies intended to assist community-dwelling older people with cognitive impairment. The majority of technologies existed prior to INLIFE and a key goal was to bring them together in one place along with a number of new applications to provide a comprehensive set of services. The range of INLIFE services fell into four broad areas: Independent Living Support, Travel Support, Socialization and Communication Support and Caregiver Support. These included security applications, services to facilitate interactions with formal and informal caregivers, multilingual conversation support, web-based physical exercises, teleconsultations, and support for transport navigation. In total, over 2900 people participated in the project; they included elderly adults with cognitive impairment, informal caregivers, healthcare professionals, and other stakeholders. The aim of the study was to assess whether there was improvement/stabilization of cognitive/emotional/physical functioning, as well as overall well-being and quality of life of those using the INLIFE services, and to assess user acceptance of the platform and individual services. The results confirm there is a huge interest and appetite for technological services to support older adults living with cognitive impairment in the community. Different services attracted different amounts of use and evaluation with some proving extremely popular while others less so. The findings provide useful information on the ways in which older adults and their families, health and social care services and other stakeholders wish to access technological services, what sort of services they are seeking, what sort of support they need to access services, and how these services might be funded

Information and Communication Technologies for the Activities of Daily Living in Older Patients with Dementia: A Systematic Review

Background: Significant innovations have been introduced in recent years in the application of information and communication technologies (ICTs) to support healthcare for patients with dementia. Objective: In the present systematic review, our goal is to keep track of ICT concepts and approaches to support the range of activities of daily living for people with dementia and to provide a snapshot of the effect that technology is having on patients' self-reliance. Methods: We reviewed the literature and identified systematic reviews of cohort studies and other authoritative reports. Our selection criteria included: (1) activities of daily living, (2) ICT, and (3) dementia. Results: We identified 56 studies published between 2000 and 2015, of which 26 met inclusion criteria. The present systematic review revealed many ICT systems that could purportedly support the range of activities of daily living for patients with dementia. The results showed five research bodies: 1) technologies used by patients with dementia, 2) technologies used by caregivers, 3) monitoring systems, 4) ambient assistive living with ICTs, and 5) tracking and wayfinding. Conclusions: There is a potential for ICTs to support dementia care at home and to improve quality of life for caregivers, reducing healthcare costs and premature institutional care for these patients

HIV Associated Neurocognitive Disorder: Exploring the complexity

Background Human Immunodeficiency Virus (HIV) infection is now a chronic disease. As people living with HIV (PLHIV) age they are at risk of a neurological co-morbid disease called HIV associated Neurocognitive Disorder (HAND), which causes varied levels of disability affecting quality of life. Early identification and diagnosis is important, as HAND is potentially treatable. Informal and professional caregivers may assist in identification of HAND. Aim To explore the complexities of identifying HAND by PLHIV, their informal or professional caregivers. Objectives: • Explore whether PLHIV and their informal caregivers can identify HAND. • Explore the experience of HAND in PLHIV. • Explore whether community based health care professionals can identify HAND. Design A pragmatic explanatory sequential design. Method A mixed method approach explored the complexities of identifying HAND through a preliminary observational multisite pilot study followed by three subsequent study phases, an online survey, a cross sectional file audit of two community based HIV teams and a modified Delphi study. Results The pilot study noted that both PLHIV and informal caregivers can identify signs and symptoms of HAND leading to diagnosis of HAND. The online survey noted PLHIV were concerned about HAND; were experiencing signs and symptoms of HAND and additionally wanted support in discussing HAND with others. The file audit noted that community based professionals were not collecting the appropriate information to identify HAND. The modified Delphi method lead to development of an initial and monitoring tool for community-based professionals to use to identify those PLHIV at risk of HAND who should be referred for formal assessment. Conclusion HAND is a potentially treatable condition. Early recognition can have a positive impact on health and quality of life of PLHIV as they age. Diagnosis of HAND is complex, but the observational and other experiences of PLHIV and their caregivers, can offer unique insights into cognitive changes in PLHIV. For those PLHIV without the support of an informal caregiver and/or who live alone, professional caregivers can act as an alternative to an informal caregiver, being well placed to observe changes in cognitive behaviour over time