Towards personalized dementia care through meaningful activities supported by technology: A multisite qualitative study with care professionals.

BACKGROUND: Person-centred care is widely recognised as important for helping people with dementia maintain a sense of self and purpose in life - especially for those living in care facilities. Despite this, most care practices still adopt a medical approach in which physical needs are prioritized over psychosocial well-being. Addressing the need to find ways of promoting person-centred approaches in care, this study explored care professionals' reflections on a novel, technological intervention (SENSE-GARDEN) that combines multisensory stimuli and digital media to create personalized environments for people with dementia. The aim of this study was to explore the experiences of care professionals who had used SENSE-GARDEN for approximately 1 year. METHODS: Three care homes in Norway, Belgium, and Portugal and 1 hospital in Romania used the SENSE-GARDEN with residents/patients with moderate to severe dementia over the course of 1 year. Qualitative data - including observations and interviews with 2 care professionals - were collected at the beginning of the study period from the Norwegian care home to explore initial impressions of the new SENSE-GARDEN room. At the end of the study period, 8 care professionals across the 4 facilities were interviewed for an in-depth exploration of their experiences. The two sets of data were analysed separately through reflexive thematic analysis. RESULTS: At the beginning of the study period, the staffs' focus was mainly on the novelty of the new SENSE-GARDEN room and how it provided opportunities for meaningful experiences. Post-intervention, the care professionals provided reflective accounts on how care could be delivered in alternative ways to standard practice. The themes generated from the post-intervention interviews were: "shifting focus onto personalized care", "building and fostering relationships", and "continuous discoveries". Through delivering person-centred care, the professionals reported a sense of purpose and achievement in their work. CONCLUSIONS: Professionals from care facilities across 4 different countries highlighted the value of interventions such as SENSE-GARDEN as a way of creating opportunities to better know people with dementia. Thus, they experienced improved relationships and greater job satisfaction. However, delivering person-centred interventions is time-consuming, and future research should evaluate the feasibility of sustaining them on a long-term basis.

Supporting identity and relationships amongst people with dementia through the use of technology: a qualitative interview study.

Meaningful activities in dementia care can promote the co-construction of narrative identity in caregiving relationships, helping to preserve the sense of self in people with dementia.Purpose: Informed by symbolic interactionism and Deweyan transactionalism, the aim of this study was to develop a transactional model of how narrative identity and relationships are promoted through the use of a new technological solution, SENSE-GARDEN, that uses digital technologies and multisensory stimuli to facilitate individualized, meaningful activities.Method: We conducted a qualitative interview study to explore the experiences of people with moderate to advanced dementia and their caregivers in Norway and Portugal. After using SENSE-GARDEN for 12-16 weeks, 20 participants (7 persons with dementia and 13 caregivers) were interviewed. The interviews were analysed using reflexive thematic analysis.Results: Three themes were generated: openness, learning, and connection. Findings suggest that SENSE-GARDEN can stimulate emotional experiences, preserve narrative identity, and foster interpersonal relationships. These findings are illustrated through a transactional model.Conclusion: This study highlights the complex multitude of factors affecting person-environment interactions in which narrative identity and relationships are constructed. To better understand these factors, future work should adopt a holistic approach to studying new methods of creating meaningful activities in dementia care.

The use of technology in creating individualized, meaningful activities for people living with dementia: A systematic review.

There is a growing interest in using technology to provide meaningful activities for people living with dementia. The aim of this systematic review was to identify and explore the different types of digital technologies used in creating individualized, meaningful activities for people living with dementia. From 1414 articles identified from searches in four databases, 29 articles were included in the review. The inclusion criteria were the study used digital technology to deliver an individually tailored activity to participants with dementia, the process of individualization was described, and findings relating to the mental, physical, social, and/or emotional well-being of the participant were reported. Data extracted from the included studies included participant demographics, aims, methods, and outcomes. The following information on the technology was also extracted: purpose, type, training, facilitation, and the individualization process. A narrative synthesis of the results grouped the various technologies into four main purposes: reminiscence/memory support, behavior management, stimulating engagement, and conversation/communication support. A broad range of technologies were studied, with varying methods of evaluation implemented to assess their effect. Overall, the use of technology in creating individualized, meaningful activities seems to be promising in terms of improving behavior and promoting relationships with others. Furthermore, most studies in this review involved the person with dementia in the individualization process of the technology, indicating that research in this area is adopting a more co-creative and inclusive approach. However, sample sizes of the included studies were small, and there was a lack of standardized outcome measures. Future studies should aim to build a more concrete evidence base by improving the methodological quality of research in this area. Findings from the review indicate that there is also a need for more evidence concerning the feasibility of implementing these technologies into care environments.

Othering and Deprioritizing Older Adults' Lives: Ageist Discourses During the COVID-19 Pandemic.

The COVID-19 pandemic is showing troubling othering demographic discourses. For older adults in particular, there are concerning thematics that should be shined light on. In this editorial, we provide perspectives from three countries: Norway, Italy and the United States. We provide four topics of discussion that can be utilized to further understand othering discoures of the COVID-19 pandemic, as well as potential future disasters.

The Use of Virtual and Immersive Technology in Creating Personalized Multisensory Spaces for People Living With Dementia (SENSE-GARDEN): Protocol for a Multisite Before-After Trial.

BACKGROUND: The number of people living with dementia is rapidly increasing. With dementia's impact on memory, communication, and self-identity, it is important to identify ways of meeting individual needs of diagnosed individuals and their caregivers. This study will test a new intervention, SENSE-GARDEN, that integrates autobiographical music, films, pictures, and scents with innovative technology to create an immersive environment tailored specifically for the individual. OBJECTIVE: The SENSE-GARDEN study is an Active Assisted Living Program-funded multicenter project. The primary objective of the study is to assess whether a personalized, innovative technology-based intervention can improve the well-being of older adults living with moderate to severe dementia. The study will also assess whether the intervention can improve coping and reduce burden in caregivers. METHODS: A controlled before-after study design will be used. There will be 3 sites in 3 trial countries: Belgium, Norway, and Portugal. A total of 55 people with dementia (PWDs) will be recruited. All eligible participants for the study will be randomized into the intervention or control group. For the first three months of the study, all participants will receive the SENSE-GARDEN intervention. For the final month of the study, the intervention group will continue visits to the SENSE-GARDEN, and the control group will discontinue visits. A mixed-methods approach will be used, including the use of standardized outcome measures, quantitative physiological data, and qualitative interview data. RESULTS: The trials commenced recruitment in August 2019, and all data are expected to be collected by the end of May 2020. A user-centered design process is underway, with results from the first phase of user interviews indicating that people with mild cognitive impairment, family caregivers, and professional caregivers consider the SENSE-GARDEN to be a potentially valuable tool in providing numerous benefits to dementia care. Feasibility testing of the SENSE-GARDEN has been completed and results are expected to be published in October 2019. CONCLUSIONS: Findings from the SENSE-GARDEN trials will provide insights into the use of technology for personalizing interventions to the PWD. This will have potential implications on not only dementia research, but it may also have influences on care practice. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/14096.

Continuous leg dyskinesia assessment in Parkinson's disease -clinical validity and ecological effect.

INTRODUCTION: Dyskinesias in Parkinson's disease (PD) patients are a common side effect of long-term dopaminergic therapy and are associated with motor dysfunctions, including gait and balance deficits. Although promising compounds have been developed to treat these symptoms, clinical trials have failed. This failure may, at least partly, be explained by the lack of objective and continuous assessment strategies. This study tested the clinical validity and ecological effect of an algorithm that detects and quantifies dyskinesias of the legs using a single ankle-worn sensor. METHODS: Twenty-three PD patients (seven with leg dyskinesias) and 13 control subjects were investigated in the lab. Participants performed purposeful daily activity-like tasks while being video-taped. Clinical evaluation was performed using the leg dyskinesia item of the Unified Dyskinesia Rating Scale. The ecological effect of the developed algorithm was investigated in a multi-center, 12-week, home-based sub-study that included three patients with and seven without dyskinesias. RESULTS: In the lab-based sub-study, the sensor-based algorithm exhibited a specificity of 98%, a sensitivity of 85%, and an accuracy of 0.96 for the detection of dyskinesias and a correlation level of 0.61 (p < 0.001) with the clinical severity score. In the home-based sub-study, all patients could be correctly classified regarding the presence or absence of leg dyskinesias, supporting the ecological relevance of the algorithm. CONCLUSION: This study provides evidence of clinical validity and ecological effect of an algorithm derived from a single sensor on the ankle for detecting leg dyskinesias in PD patients. These results should motivate the investigation of leg dyskinesias in larger studies using wearable sensors.

ePoint.telemed--An Open Web-based Platform for Home Monitoring of Patients with Chronic Heart Failure.

In North Norway, no telemonitoring services for chronic heart failure (CHF) have yet been established, hence no investigations in the area have been published. However, large distances and a sparse population are causes for extra expenditure on hospital visits. In this paper, we describe the ePoint.telemed platform for home telemonitoring of CHF patients. We have reviewed the literature on home monitoring techniques, and developed two prototype platforms for remote collection of physiological data. We have refined one of the prototypes and subjected it to user testing among health professionals and their clients. Fifty patients will be involved in a randomized controlled trial aiming to establish if the home telemonitoring of CHF is clinically feasible and cost-effective. The ePoint.telemed platform is a fully automated internet based system meant for early warnings in a CHF rehabilitation program. The core of the platform is a dashboard connected to a blood pressure meter, a weight scale, and a web-based patient questionnaire. Unlike traditional systems built on dedicated medical equipment, we are applying easy-to-use components geared towards the sports market.

Quantitative home-based assessment of Parkinson's symptoms: the SENSE-PARK feasibility and usability study.

BACKGROUND: Currently, assessment of symptoms associated with Parkinson's disease is mainly performed in the clinic. However, these assessments have limitations because they provide only a snapshot of the condition. METHODS: The feasibility and usability of an objective, continuous and relatively unobtrusive system (SENSE-PARK System), which consists of wearable sensors (three worn during the day and one worn at night), a smartphone-based App, a balance board and computer software, was tested 24/7 over 12 weeks in a study including 22 PD patients. During the first four weeks of the study, patients did not get feedback about their performance, during the last eight weeks they did. The study included seven clinical visits with standardized interviews, and regular phone contact. The primary outcome was the number of drop-outs during the study. As secondary outcomes, the Post-Study System Usability Questionnaire (PSSUQ), score and information obtained from the standardized interviews were used to evaluate the usability of the system. RESULTS: All patients completed the study. The participants rated the usability of the SENSE-PARK System with a mean score of 2.67 (±0.49) on the PSSUQ. The interviews revealed that most participants liked using the system and appreciated that it signaled changes in their health condition. CONCLUSIONS: This 12 week controlled study demonstrates that the acceptance level of PD patients using the SENSE-PARK System as a home-based 24/7 assessment is very good. Particular emphasis should be given to a user-friendly design. Motivation to wear such a system can be increased by providing direct feedback about the individual health condition.

Development and trial of ePoint.telemed - An open web-based platform for home monitoring of chronic heart failure patients.

In North Norway no routine home telemonitoring services for chronic heart failure has yet been established and hence no investigations in the field have been published, although large distances and a sparse population are causes for extra public and private expenditure on travelling for patients when they make a visit to the hospital. In this paper we describe the ePoint.telemed platform for home telemonitoring of patients with chronic heart failure (CHF). The core of the platform is a dashboard, which is accessible through a browser window. Integrated with the dashboard are a blood pressure meter, a weight scale and a web-based patient questionnaire. The ePoint.telemed platform is a fully automatic internet based system meant for early warning in a CHF rehabilitation program. Unlike traditional remote medical technologies (RMT) building on dedicated medical equipment, we are applying easy-to-use personal health system (PHS) components geared towards the wellness and sports market. A Randomized Controlled Trial (RCT) has been started using the platform. 50 patients will be involved in the study with the aim of finding out if the home telemonitoring of CHF is clinically effective in Northern Norway and if it is cost-effective.

Randomized trial of a novel game-based appointment system for a university hospital venereology unit: study protocol.

BACKGROUND: Chlamydia is the most common reportable sexually transmitted disease (STD) in Norway, and its incidence in the two northernmost counties has been disclosed to be nearly the double of the Norwegian average. The latest publicly available rates showed that 85.6% of the new cases were diagnosed in people under 29 years old. The information and communication technologies are among the most powerful influences in the lives of young people. The Internet can potentially represent a way to educate on sexual health and encourage young people, and especially youth, to be tested for STDs. If hospital websites include an easy and anonymous system for scheduling appointments with the clinic, it is possible that this could lead to an increase in the number of people tested for STDs. METHODS: The purpose of the study is to assess the impact of a game-based appointment system on the frequency of consultations at a venereology unit and on the use of an educational web app. An A/B testing methodology is used. Users from the city of Tromsø, in North Norway, will be randomized to one of the two versions of the game-style web app on sexual health at www.sjekkdeg.no. Group A will have access to educational content only, while group B will have, in addition, access to a game-based appointment system with automatic prioritization. After one year of the trial, it will be analyzed if the game-based appointment system increases the number of consultations at the venereology unit and if health professionals deem the system useful. DISCUSSION: This study will explore if facilitating the access to health services for youth through the use of a game-based appointment system integrated in a game-style web app on sexual health education can have an impact on appointment rates. TRIAL REGISTRATION: The trial is registered at clinicaltrials.org under the identifier ClinicalTrials.gov NCT:02128620.

Participatory design in Parkinson's research with focus on the symptomatic domains to be measured.

BACKGROUND: There is a growing interest in the objective assessment of health related outcomes using technology providing quality measurements to be applied not only in daily clinical practice, but also in scientific research. Differences in the understandings of the condition and the terminology used between people with Parkinson's (PwPs), clinicians and technical developers may influence the progress of a participatory design process. OBJECTIVE: This paper reports on a participatory design process to achieve a consensus among PwPs, clinicians and technologists over the selection of a set of symptomatic domains to be continuously assessed, in order to provide results relevant to both PwPs and clinicians. METHODS: The methods used were a Web based user survey, end-user focus groups, ranking by combined methods, a Delphi process performed among clinicians and scientists, and prioritization of the results in a concertation workshop for PwPs, clinicians and technologists. RESULTS: The following symptomatic domains were commonly agreed by PwPs and clinicians to be of central importance in a system of continuous assessment: hypokinesia/bradykinesia, tremor, sway, gait, sleep and cognition. This list satisfied both the needs of the PwPs and the concerns of the clinicians regarding the means of advancing new strategies in assessment and interventions in PD. CONCLUSIONS: A participatory design strategy allowed the definition of a consensual list of symptomatic domains. Both the strategy and the achieved results may be of relevance for similar interdisciplinary approaches in the field of PD using a participatory design involving patients, clinicians and technologists.

Tweet content related to sexually transmitted diseases: no joking matter.

BACKGROUND: Online social media, such as the microblogging site Twitter, have become a space for speedy exchange of information regarding sexually transmitted diseases (STDs), presenting a potential risk environment for how STDs are portrayed. Examining the types of "tweeters" (users who post messages on Twitter) and the nature of "tweet" messages is important for identifying how information related to STDs is posted in online social media. OBJECTIVE: The intent of the study was to describe the types of message emitters on Twitter in relation to two different STDs-chlamydia and human immunodeficiency virus (HIV)-as well as the nature of content tweeted, including how seriously the topic was treated. METHODS: We used the Twitter search engine to look for tweets posted worldwide from August 1-7, 2013, and from September 1-7, 2013, containing the words "chlamydia" or "HIV", and the hashtags "#chlamydia" or "#HIV". Tweeters were classified by two independent reviewers according to the type of avatar of the user (human, logo, or fantasy), the identification of the emitter (identifiable, semi-identifiable, or non-identifiable), and the source (private company, general media, scientific media, non-governmental, individual account, academic institution, government department, or undefined). Tweet messages were also independently classified according to their nature (serious or jokes/funny), and whether their main message was factual or of a personal nature/experience. RESULTS: A total of 694 tweets were posted by 426 different users during the first 7 days of August and September, containing the hashtags and/or simple words "chlamydia" and/or "HIV". Jokes or funny tweets were more frequently posted by individual users (89%, 66/74), with a human avatar (81%, 60/74), from a non-identifiable user (72%, 53/74), and they were most frequently related to chlamydia (76%, 56/74). Serious tweets were most frequently posted by the general media (20.6%, 128/620), using a logo avatar (66.9%, 415/620), and with identifiable accounts (85.2%, 528/620). No government departments, non-governmental organizations, scientific media, or academic institutions posted a joke on STDs. A total of 104 of these analyzed tweets were re-tweeted messages, belonging to 68 unique tweets. The content was serious (99%, 67/68), factual (90%, 52/58), and about HIV (85%, 58/68). CONCLUSIONS: Social media such as Twitter may be an important source of information regarding STDs provided that the topic is presented appropriately. Reassuringly, the study showed that almost 9/10 of tweets on STDs (chlamydia and HIV) were of serious content, and many of the tweets that were re-tweeted were facts. The jokes that were tweeted were mainly about chlamydia, and posted by non-identifiable emitters. We believe social media should be used to an even larger extent to disseminate correct information about STDs.

Gamification strategy on prevention of STDs for youth.

Sexually transmitted diseases (STDs) and especially chlamydia is a worrying problem among North-Norwegian youngsters. Gamified web applications should be valued for sexual health education, and thus STDs prevention, for their potential to get users engaged and involved with their healthcare. Aiming to achieve that youngsters become more aware of STDs we have developed "sjekkdeg.no", a gamified web application focused on sexual health targeting North-Norwegian youngsters. Gamification techniques like avatars, achievement-based gifts and social network sharing buttons have been implemented in the site that includes educational content on sexual health and a STDs symptom checker. Preliminary results show that the game-style web app could be useful to encourage users to learn more on sexual health and STDs and thus changing their risky behaviors and preventing sexually transmitted diseases.

Avatars using computer/smartphone mediated communication and social networking in prevention of sexually transmitted diseases among North-Norwegian youngsters.

BACKGROUND: Sexually transmitted diseases (STDs), especially the Chlamydia trachomatis bacterial infection, a common cause of infertility, are highly prevalent in developed countries, and a worrying problem in North Norway, where the incidence of chlamydia twice the Norwegian average. Seventy percent of reported chlamydia cases are found in people below 25 years of age, and although its spread could be controlled with proper prevention, young people are more aware of the risks of unwanted pregnancy than their risk of acquiring a STD. Information and Communication Technologies, including, the Internet, social media and/or smartphones, should be valued for sexual health promotion for their potential to engage young audiences. And in these media, avatars guarantee anonymity to users when handling sensitive information. The main objective of this project is to achieve that North Norwegian youngsters become more aware of STDs through the use of popular technologies among young people. METHODS: A Virtual Clinic for Sexually Transmitted Diseases (VCSTD) will be developed. The VCSTD will provide early guidance and reliable information sources concerning reproductive health, delivered in a novel and innovative way to the younger population. The VCSTD consists of an "avatar" supported intervention in a serious gaming and e-learning environment, which will bypass direct physical access (in person) to reliable medical information, as well as allowing the youngsters to share that information in social media, and thus helping the VCSTD to be disseminated to more people.Data analyses will be conducted on publically available health data relevant to STDs in Troms and Finnmark, like the absolute number of chlamydia tests, the amount of emergency contraception medication sold, and the number of abortions. Also, usage data of the system and experiences of usefulness will be explored through participants' voluntary responses to a feedback form available in the VCSTD. DISCUSSION: This study will examine the usefulness of an online public health intervention that aims to promote healthy sexual practices among North-Norwegian youngsters. If shown to be effective, the intervention could prove to be an affordable and widely accessible intervention to decrease risky sexual practices in younger population.