- Technologies for assessment and management of wayfinding risks for persons living with dementia in their communities
- Acceptance and reliability of digital (web-based) version of Alberta Rating Index for Apps (ARIA)
- Knowledge mobilization of a strategy guideline to reduce the risks associated with getting lost among persons living with dementia
- Evaluation of best police practice resources in the rapid response for missing persons with dementia
- Model for assessment of risks of going missing in persons living with dementia during and post COVID-19 pandemic
- A multi-featured mobile application to support workflow of health care aides who provide services to Albertans living with dementia
- Self-sovereign identity data of persons living with dementia at risk of getting lost: how can personal data be protected, owned by individuals, and used to keep dementia clients safe, and inform research and policy?
- A framework to describe the levels of risk associated with dementia-related wandering (PhD dissertation)
- Vibrant Minds
- The Smart-Condo™ for Observing and Measuring Activities of Daily Living
- Community ASAP
- Consumer guideline for locator technologies
- Locator Device Project
- Digital storytelling and dementia: A multi-site study
- Evaluation of self-sovereign identity and ethics of data in public safety
If you wish to obtain further information about these studies, please contact us with specific requests and provide your contact information.
Technologies for assessment and management of wayfinding risks for persons living with dementia in their communities
Funder: AGE-WELL Networks of Centres of Excellence (NCE)
Principal investigator: Lili Liu (University of Waterloo)
Other investigators: Antonio Miguel Cruz (University of Alberta), Alex Ferworn (Ryerson University)
It is commonly known that three out of five people living with dementia will wander. The consequences can vary and include minor injuries, high search and rescue costs. If not found within 24 hours, there is a high chance of injury or death. The purpose of this series of four studies is to examine the application of technologies for assessment and management of wayfinding risks among persons living with dementia in their communities. These studies are as follows:
- To quantify risks associated with vulnerable older adult getting lost due to impaired cognitive health and dementia. (Principal investigator: Lili Liu, University of Waterloo)
- To develop and validate a usability scale for technologies, specifically, locator devices. (Principal investigator: Antonio Miguel Cruz, University of Alberta)
- To create a national guideline and recommendations, on the consistent use of terminologies, and a balanced, ethical approach to collecting data that can inform stakeholders such as resource managers, policy developers, and public funders on evidence-based decisions. (Principal investigator: Lili Liu, University of Waterloo)
- To examine the benefits and challenges associated with the innovative use of drones in search and rescue of persons living with dementia and who get lost in non-urban spaces in the communities. (Principal investigator: Alex Ferworn, Ryerson University)
Impacts are seen through five products:
- A reliable and validated measure that predicts risks of going missing.
- A mobile app that uses the predicted risk levels to recommend a personalized strategy for people with dementia and their care partners to mitigate these risks.
- A brief scale to assess the usability of technologies used to locate a person who is missing.
- A national coordinated strategy for the collection of data on missing older adults to inform programs, product designs, and policies.
- An algorithm-informed search using unmanned aerial systems for finding missing or lost persons living with dementia.
Acceptance and reliability of digital (web-based) version of Alberta Rating Index for Apps (ARIA)
Funder: AGE-WELL NCE
Principal investigator: Lili Liu (University of Waterloo)
Co-investigator: Antonio Miguel Cruz (University of Waterloo, University of Alberta)
There are over 300,000 mobile apps for health. These apps can enhance self-management and access to health services, provide health information, and facilitate communication between patients and healthcare providers. However, not all mobile health apps have acceptable quality or are useful. Some may have inaccurate, inappropriate, or even harmful content. As the sale of apps is not regulated, there are minimal safeguards to protect users from apps with low quality or harmful content. Users of mobile apps for health who want to evaluate the quality of mobile health apps they download for a fee or for free, are limited to available reviews and ratings shared by other users. Such reviews may not be trustworthy; also, there is no association between user ratings and the clinical utility and usability of mobile health apps. To allow consumers to assess the quality of mobile health apps, we developed the Alberta Rating Index for Apps (ARIA). This index offers a way for users, including older adults, family caregivers, and health service providers, to evaluate the quality and usability of health apps based on nine quality criteria. We tested the reliability and validity (content and criterion) of the paper-based version of ARIA in English. In this proposed project, we will develop and examine the acceptance and reliability of a digital (web-based) version of the index in English and French, developed to expand the use of the ARIA. The digital ARIA calculates a composite rating score for each app and allows users to visualize areas of strength and weakness based on users’ ratings. We will use the ratings to create a crowd sourced repository of mobile health apps and share the summary of ratings with website visitors. The digital ARIA will be more accessible and practical than the paper-based version for users of mobile health apps.
Knowledge mobilization of a strategy guideline to reduce the risks associated with getting lost among persons living with dementia
Funder: AGE-WELL NCE (Postdoctoral Award in Aging and Technology)
AGE-WELL postdoctoral fellow: Noelannah Neubauer (University of Waterloo)
Supervisor: Lili Liu (University of Waterloo)
This project directly aligns with knowledge mobilization. Activities will be to obtain feedback about the interactive version of the guideline and video from individuals and organizations with expertise (e.g., Alzheimer Society of Ontario), disseminate it to staff of community agencies and health authorities through webinars, workshops, websites (e.g., findingyourwayontario.ca, icdw.org), and encourage practice leaders to profile it in their communities of practice.
This project is important because as our Canadian population ages, missing persons cases involving persons with dementia will increase. Moore et al. (2009) developed a framework that identified varying “levels” of risk through perimeter transgression. Wander-management strategies were then matched to corresponding risk levels. This model has limitations. Primarily, it focuses on “risk” as negative (Lupton, 1999), does not encourage the benefits of wandering in safe contexts, and most suggested strategies are reactive rather than proactive. This negative perception and reactive response tend to restrict autonomy, such as the use of locked dementia units (Neubauer & Liu, 2019). In addition, this framework did not consider behaviours that occur prior to the missing incidence, which present optimal opportunities to implement proactive or preventative strategies. The guideline developed by Liu & Neubauer (2020) leverages Moore et al. (2009)’s work where antecedent behaviours of missing incidents are identified and included and emphasizes the use of proactive strategies that focuses on the balance between safety and autonomy. This work represents close collaboration with target users, i.e., community organizations, caregivers and persons with dementia, enhancing user adoption.
The overall aim of this project is to develop and evaluate the effectiveness of an interactive guideline that encourages the use of proactive strategies to promote safe wandering among persons with dementia that are at risk of getting lost. The specific objectives are to:
- Develop additional knowledge mobilization tools such as videos and an interactive version of the Canadian Guideline for Safe Wandering to improve uptake.
- Determine the effectiveness of the interactive version of the guideline.
- To scale up the guideline nationally and internationally through partnerships with the Alzheimer Society of Ontario, Dementia Alliance International and the International Consortium on Dementia and Wayfinding.
- Deliver a workshop in conjunction with a major conference to highlight the findings from this project and to showcase the new version of the guideline at the next Finding your way event in February 2021.
Evaluation of best police practice resources in the rapid response for missing persons with dementia
Funder: Mitacs
Principal investigator: Lili Liu (University of Waterloo)
Industry partner: Alzheimer Society of Ontario
Mitacs postdoctoral fellow intern: Noelannah Neubauer (University of Waterloo)
Three out of five Canadians with dementia wander and are at risk of going missing. Strategies, such as wearable GPS devices, can assist family and police services in locating missing vulnerable older adults with dementia. In 2018, the Alzheimer Society of Ontario’s Finding Your Way® Program created a series of education resources for police services to enhance their ability to locate this growing population at risk. Now, two years later, the program is ready to evaluate the impact of these education resources used by police services. The main objective of this project is to evaluate the impact of the Finding Your Way® Program education resources used by police services in Ontario. This project will use a mixed-methods design and will involve two research activities: survey, and interviews. The purpose of the survey will be to determine the current uptake of the police resources and to identify what police service changes have been made as a result of the education resources. The purpose of the interviews will be to determine the success factors and barriers for the implementation of the best practice resources. Individual interviews will occur with one to two officers from each police service that has been using the education resources.
Model for assessment of risks of going missing in persons living with dementia during and post COVID-19 pandemic
Funder: Mitacs and AGE-WELL
NCE
Principal investigator: Lili Liu (University of Waterloo)
Industry partner: Clinisys EMR
Mitacs postdoctoral fellow: Hector Perez (University of Waterloo)
According to the Institute for Health Metrics and Evaluation (Institute for Health Metrics and Evaluation (IHME), 2020) the number of global deaths and disabilities related to mental health conditions, including Alzheimer disease and related dementias, have risen in recent years. This applies to Canada. With a growing aging population, the number of Canadians with dementia will increase to nearly a million in 10 years (Alzheimer’s Association, 2019). According to the World Health Organization (2017), dementia is a public health priority. This priority is exacerbated by the current COVID-19 pandemic. Due to physical distancing requirements, persons living with dementia have minimal or no access to support such as paid carers, family members and volunteers to monitor or accompany them during mobility activities. Before the pandemic, this population was already at risk for going missing. During the pandemic, these risks are exacerbated. The overall objective of this proposed project is to define, validate and apply a quantitative model that can capture data and generate numerical indicators of risks of going missing, injury and death for people living with dementia, based on the multiple factors identified in the conceptual model proposed by Neubauer and Liu (2020). In this project we will use a transdisciplinary approach of applied research, we will apply exploratory research with an observational design, that includes a critical literature review and a correlational and predictive study with factor analysis and multilevel and multivariate linear Regression models. This will help us to understand and determine the relation between factors and outcomes, and ultimately that will help to assess the risk of a person for going missing. As the COVID-19 pandemic progresses around the world, it is necessary to protect the most vulnerable individuals including those living with dementia. This innovative approach to comprehensively consider key factors in vulnerable older adults in order to assess their risks and consequences of going missing, will make an important impact on their lives and lives of their carers now and post-pandemic. It will also help us prepare to mitigate the risks in future pandemics.
A multi-featured mobile application to support workflow of health care aides who provide services to Albertans living with dementia
Funders: Alberta Innovates and Centre for Aging and Brain Health Innovation (CABHI)
Principal investigator: Lili Liu (University of Waterloo)
Co-investigators: Eleni Stroulia (University of Alberta), Antonio Miguel Cruz (University of Alberta), Sharla King (University of Alberta)
Industry partner: Clinisys EMR
In Alberta, health care aides (HCAs) comprise the second largest workforce, next to nurses, that provide care to seniors. Currently, we have a shortage of 5000 HCAs and this gap is rising. As the number of older adults increases, age-related health conditions such as dementia also rise. Presently, it is challenging to meet the needs of Albertans living with dementia, particularly those who are living alone, or with family carers with limited capacity. These conditions put persons with dementia at risk, limit their autonomy, and restrict their ability to remain in their home communities or age in place. This proposal, in collaboration with Clinisys, an Alberta-based SME, will address workflow issues identified by HCAs and their teams in a 2012 report of a study funded by the Government of Alberta. In addition, it will allow family carers to access information and connect with service providers. Finally, we will also incorporate the technology into HCA student training. We believe that by using a multi-featured mobile application to support workflow of health care aides who provide services to Albertans living with dementia, Alberta can address the recruitment (especially males), retention, and recognition of HCAs. This would result in improved health outcomes of Albertans living with dementia as their needs would be better met while they age in place.
Self-sovereign identity data of persons living with dementia at risk of getting lost: how can personal data be protected, owned by individuals, and used to keep dementia clients safe, and inform research and policy?
Funder: Mitacs
Industry partner: Secours.io
Principal investigator: Lili Liu (University of Waterloo)
Postdoctoral fellow: Noelannah Neubauer (University of Waterloo)
This project consisted of two different phases. The purpose of the first phase was to ensure members of the public can understand what self-sovereign identity is in layperson language for users who are persons living with dementia and their care partners. This was done by evaluating persons with dementia and caregiver’s level of understanding, acceptance, and willingness to adopt this technology for their personal and health data related to risks of getting lost. The purpose of the second phase was to evaluate the usability of the prototype mobile application developed by Secours using the think aloud protocol (Ericsson & Simon, 1980).
Alberta Rating Index for Apps (ARIA): An index to rate the quality of mobile health applications (PhD dissertation)
PhD student: Peyman Azad Khaneghah (University of Alberta)
Supervisor: Lili Liu (University of Alberta)
There are more than 300,000 mobile health apps available through Google Play and iTunes. Many of these apps, have low quality, may not be useful, or may be unsafe for end-users. It is a challenge for patients, family caregivers, and mental healthcare providers to identify apps with acceptable quality. Existing app quality rating scales are either too complex or do not include all relevant criteria. We have created a rating index that can be used by patients, family caregivers, and health care professionals to identify apps that demonstrate acceptable or high quality based on a set of validated criteria. We used a multi-strategy study in three phases to develop ARIA. In phase one, through review of the literature and focus groups of stake holders, we determined the quality criteria relevant to mobile health apps and developed an item pool. In phase two, we first validated the content of the item pool by 18 stake holders from different provinces of Canada, using an online platform. Next, a subsample of the participants from the validation survey, reviewed the items endorsed as valid and reduced the number of items by removing the redundancies and merging the similar items. In phase three, we tested the reliability of the index with four occupational therapists, three older adults, and three adults living with mental health conditions. Participants used ARIA to rate 11 mental health mobile apps. The results indicated that ARIA has a high inter-rater reliability especially. Participants also endorsed ARIA as an easy to use index that can also educate them how to rate the quality of mobile health apps. Future studies will investigate the reliability of ARIA with more diverse raters and other mobile apps related to other health conditions.
A framework to describe the levels of risk associated with dementia-related wandering (PhD dissertation)
PhD student: Noelannah Neubauer (University of Alberta)
Supervisor: Lili Liu (University of Alberta)
The purpose of Neubauer’s doctoral thesis was to develop a framework of wandering that guides choices of interventions to manage wandering and prevent elopement in consideration of the range of risks the term represents. The research design consisted of exploratory and explanatory phases. For the exploratory phase, risk levels and a comprehensive list of wander-management strategies were populated through an extensive literature search, and semi-structured interviews. The explanatory phase incorporated the results of the previous phase into a conceptual framework that paired each level of risk of wandering to its corresponding strategy. This framework was then verified and validated by interested stakeholders to examine its potential of being implemented for use within the community.
Vibrant Minds
Funder: AGE-WELL Networks of Centres of Excellence (NCE)
Co-principal investigators: Eleni Stroulia (University of Alberta), Lili Liu (University of Waterloo), Adriana Rios Rincon (University of Alberta)
Co-investigator: Antonio Miguel Cruz (University of Alberta)
Recent studies have shown that training older adults using video games can improve their cognition (Anguera, Boccanfuso, Rintoul, Al-Hashimi, & Faraji, 2013; Nouchi, et al., 2012). The premise for this research lies on the idea that the brain of older people is able to retain considerable plasticity (Toril, Reales, & Ballesteros, 2014) that can be fostered by being trained in playing computing games. These brain training games are expected to improve cognitive functions such as executive function, memory, attention and processing speed not only during the performance of the computing games but also during skills or performance that have not been trained such as the performance of activities of daily living. This is referred to as transfer effects (Nouchi, et al., 2012). Although these results are promising about the potential of brain training using computing serious games for improving cognitive functions in older adults, the scientific evidence for the beneficial effects of these games is still scarce.
We developed a collection of serious mobile (Android) and web-based games, sharing a common back end, for the assessment and intervention of visuomotor, cognitive and mental health conditions. These games include Whack-A-Mole (WAM), Word Search, Bejeweled, and Mahjong Solitaire. They are appropriate for cognitively healthy older adults as well as those with up to moderate dementia. These touch-screen enabled computer games contain few rules and use a simple interface. As gameplay improves, each game becomes progressively more difficult. The software embedded in the suite of games captures gameplay data in an anonymized file.
The purpose of this two-phase study was to investigate how playing these three games (WAM, Word Search, Bejeweled, Mahjong) affects engagement and cognitive functions in older adults with and without cognitive impairment. In Phase I (Pilot usability phase), older adults were recruited to evaluate the usability of three of the serious games (WAM, Word Search, Bejeweled) and pilot-test questionnaires used in Phase II. In Phase II (Effectiveness phase), older adults who are cognitively healthy or have mild to moderate dementia were recruited to assess the effects of playing serious games on their engagement and on different aspects of their functioning. Questionnaires and brief qualitative interviews were administered at different timepoints to assess participants’ involvement in each task, affect, specific mental functions (e.g., attention, memory, visual perception), satisfaction, and ease of use of the games. Sessions were also video recorded to obtain information about participants' engagement in activities.
The Smart-Condo™ for Observing and Measuring Activities of Daily Living
Funder: AGE-WELL NCE
Co-principal investigators: Eleni Stroulia (University of Alberta), Lili Liu (University of Alberta)
Co-investigators: Ioanis Nikolaidis (University of Alberta), Herb Yang (University of Alberta)
Healthcare professionals observe and rate – with the Barthel scale, for example – the ability of an individual to independently perform their activities of daily living and their functional mobility in their living environment, in order to assess their degree of independence. This process is time-consuming, since it requires a therapist to spend quite some time with the individual in their home, and subjective, since different observers may rate the same observation differently. The Technology: The Smart-Condo™ is a combined hardware-software platform that integrates two powerful emerging Information and Communication Technologies (ICT): Internet of Things and Data Analytics. The platform is used to unobtrusively and continuously observe, analyze and quantify the older adults’ abilities. Significant changes in the inferred indicators may inform personalized interventions and decisions around transitions of care. The Smart-Condo™ consumes data produced by heterogeneous collections of sensors, embedded in the home environment and its furnishings or worn by the occupants. The sensors perform routine environmental sensing (i.e., levels of light and sound, temperature, and humidity) as well as sensing of occupant activities (i.e., their motion and use of furniture, proximity to points of interest, use of cabinetry, and appliances). The data acquired by the sensors is transmitted over a variety of communication technologies and analyzed into a central cloud-based repository. The Smart-Condo™ platform is quite mature and has been deployed in four different spaces to date. Our analyses have demonstrated the accuracy of the extracted indicators, with respect to movement and activity recognition.
Community ASAP
Funder: AGE-WELL NCE and Centre for Aging and Brain Health Innovation (CABHI)
Principal investigator: Lili Liu (University of Alberta)
Co-investigators: Eleni Stroulia (University of Alberta), Ron Beleno (Co-chair, AGE-WELL Older Adults and Caregiver Advisory Committee)
Three out of five persons with dementia wander. When a loved one goes missing, it can be devastating for caregivers. We developed and tested Community ASAP, a website and mobile application that sends out alerts and helps find missing persons with dementia. A community coordinator with the local police initiates the alerts, which are also sent out over social media. Community volunteers register to receive alerts within chosen geographic areas in order to help keep an eye out for mission persons when they receive alerts. If they see the missing person, they can use the app or call 911. Individuals living with dementia or their caregivers can pre-register. We created an application that is easy-to-use by working with police, search-and-rescue organizations, and agencies that support older adults living with dementia and tested the app in three provinces. We also interviewed 20 stakeholders to understand more about the ethical and legal issues about sharing information on the app. Key findings were:
- Community volunteers can help find vulnerable older adults living with dementia who go missing using a new mobile application.
- Coordinated resources are needed to find people at risk for going missing. Community volunteers are an asset.
- While Community ASAP worked in a trial in three provinces, a business model is needed to roll out sustainable implementation.
Consumer guideline for locator technologies
Funder: AGE-WELL NCE
Principal investigator: Lili Liu (University of Alberta)
Co-investigator: Don Juzwishin (Alberta Health Services)
Three out of five Canadians with dementia wander. Statistics Canada reported the numbers of missing adults who "wandered off" have increased from 2010 to 2014. These are underestimates as not all individuals who went missing were reported. An Alberta study showed that locator devices gave caregivers peace of mind. Consumers do not have access to comparative information when choosing a product. The most frequently asked question of the Alzheimer Society of Ontario related to locator devices. The purpose of this project was to develop an online guideline of features of commercially available locator technologies for caregivers to monitor individuals with dementia. With our partners from the Alzheimer Society of Ontario, we created an online resource about locator technology features that met the needs of persons living with dementia and their care partners. This resource described product features in a consistent, user-friendly format. We evaluated the usability of the resource and collected metrics about visits to the website in which the resource was located.
Locator Device Project
Funders: Alberta Innovation and Advanced Education, Alberta Health Services
Principal investigator: Lili Liu (University of Alberta)
Co-investigators: Don Juzwishin (Alberta Health Services)
The purpose of this study was to examine the acceptance of Global Positioning
System (GPS) used to help people with dementia, who are at risk for wandering in their communities. We used a mixed methods research approach that included use logs, pre and post paper-based questionnaires, and focus groups. Forty-five client-caregiver pairs (dyads) were included to use one of the GPS devices for an average of 5.8 months over a one-year period. GPS acceptance was high; dyads were likely to continue using the GPS. According to the participants, the GPS provided caregivers peace of mind and reduced anxiety in dyads when clients got lost.
(From: Liu, L., Miguel Cruz, A., Ruptash, T., Barnard, S., & Juzwishin, D. (2017). Acceptance of global positioning system (GPS) technology among dementia clients and family caregivers. Journal of Technology in Human Services, 35(2), 99-119.)
Digital storytelling and dementia: A multi-site study
Funders: Canadian Consortium on Neurodegeneration in Aging (CCNA)
Principal investigator: Lili Liu (University of Waterloo)
Co-investigators: David Kaufman (Simon Fraser University), Arlene Astell (University of Toronto)
Digital storytelling is the process of a facilitator and an individual collaborating to co-create a narrative in the form of a short video. Digital storytelling has been used to create legacy pieces for older adults of many abilities and diagnoses, including older adults living with dementia. The purpose of this study is to explore and understand the benefits of digital storytelling as perceived and expressed by the storytellers (adults with dementia) and to understand how digital storytelling practices can be adapted when co-creating these stories with persons living with dementia. This project was carried out at three sites: Edmonton, Vancouver and Toronto. Adults with early stage dementia participated in eight in-person digital sessions led by digital storytelling f. Digital storytelling sessions were recorded and participants completed an exit interview about their experiences creating the stories. Final versions of the stories were presented at a viewing event attended by participants and their families and friends. A secondary analysis is currently underway to examine digital storytelling facilitators’ roles during digital storytelling with persons living with dementia.
Evaluation of self-sovereign identity and ethics of data in public safety
Funder: Mitacs
Principal investigator: Lili Liu (University of Waterloo)
Industry partner: Secours.io
Mitacs postdoctoral fellow: Noelannah Neubauer (University of Waterloo)
Three in five persons with dementia will wander. This statistic however was derived from the USA, and it is unknown as to how this number was generated and what it specifically entails. The collection of Canadian-based data involving missing persons with dementia in Canada is limited. Secours.io’s initiative of collecting missing persons data generated from partners such as Project Lifesaver, could assist in filling this gap. Due to the sensitivity that arises from vulnerable persons data, this project will focus on identifying balanced, effective and ethical approaches for Secours.io to collect this data. This project will involve a literature review and interviews among key stakeholders across Canada and the USA. Seocurs.io mission is to transform public safety through the collection of data.