Estimates of life expectancy are increasing, yet age-related disability is still not decreasing [1,2]. Cognitive impairment, including memory problems, are increasingly considered a major public health, economic, social, and political challenge. Projected estimates are that over 75 million older adults worldwide will experience some form of dementia by 2030 [3]. Most older adults with dementia want to remain at home, in a familiar environment, as long as possible [4,5]. For those people with dementia who live at home, engaging in activities outside the home can predict vulnerability. For instance, one study found that 43% of people with dementia wander at some point [6]. Not all people with dementia, especially at the early stage of the disease, have a formal diagnosis or may feel stigmatized by the word [7-9]. Therefore, for the purpose of this research, the term “memory problems” will be used to identify participants rather than dementia. Further, in this protocol we refer to “housing decisions” as decisions about how to remain safely at home as well as decisions about whether to move elsewhere or not. Memory problems and other dementia-related behaviors, along with a need for more skilled health care services, can be a strong incentive to relocate people with dementia to residential care facilities, even against their will [10,11]. Whether to stay at home (ie, age in place) or move to a residential care facility is a frequent, and difficult, decision for older adults with health and memory problems and their informal and formal caregivers [12]. Moreover, the decision about whether it is time to relocate may have to be faced repeatedly as autonomy diminishes and the current housing situation may not provide enough support. Older adults with memory problems may express the desire to stay at home [5] but they and their caregivers are often unaware of options available to them that could support them to remain safely at home. Furthermore, older adults with memory problems are often unaware of their right to be engaged in the decision-making process, which undermines the quality of housing decisions for them and their caregivers [13-15].

New technologies could extend the period of time during which older adults with memory problems can remain mobile and autonomous [16]. Alarm bracelets with communication systems, assistive walking devices, support bars, and adaptive kitchen equipment are commonly used to support independence in indoor environments [17,18]. There is enormous potential for other technological interventions that are used extensively in other sectors, such as GPS tracking, indoor beacon technology, bed sensors, and personal activity monitors to measure movement (ie, acceleration, cadence, and steps) [19,20], detect falls [21], and measure activity inside and outside the home or body metrics (eg, blood pressure and heart rhythm) [22]. These technologies could be enlisted to support mobility and autonomy in the home environment and hold great potential for older adults whose informed value-congruent decision is to stay home [23-26]. However, few technologies have been applied or tested with older adults in real-life settings outside of residential care facilities. Further, there have been limited attempts to use technologies to assist older adults with memory problems to stay at home longer, and data from such devices have not been used to inform housing decisions. This study builds on our current work [27,28].

To improve the quality of housing decisions among older adults with memory problems, team members of this study have performed systematic reviews [14,29] and created and evaluated electronic decision support interventions (e-DSIs) to inform and foster shared decision making (SDM) [14,30]. However, few studies have examined the relationship between the dynamics of mobility patterns and mobility experiences outside the home and how an understanding of mobility can inform SDM about housing options. Person-centered care promotes patient autonomy, empowerment, and value-congruent choice [31,32] and is key to the next generation of health reforms [33]. SDM is the cornerstone of person-centered care and a process whereby the people involved in decision making identify the decision to be made and discuss risks and benefits of the options, as well as the preferences of all involved [15,34-37]. In the case of older adults with memory problems and their caregivers, SDM requires conveying information in a way that will engage them in the decision-making process by helping to clarify what matters most to them. Preferred options need to be assessed and, if possible, tailored to meet the person’s understanding and needs. Decisions made in this way increase satisfaction, increase adherence to decisions made, and decrease decisional regret [38]. SDM is especially important in preference-sensitive decisions or in circumstances where decision making is plagued with uncertainty, such as housing decisions [29]. Housing decisions for older adults facing loss of autonomy are distinct in that their level of autonomy related to memory problems may be changing and their decisions can quickly be out of date. Thus, the decision-making process may need to be repeated and requires updated information on a regular basis. We hypothesize that an adapted e-DSI and the devices connected to it could play an important role in informing and updating this decision.

The overall aim of this research project is to understand the mobility patterns and experiences of older adults with memory problems living at home and how this data can improve autonomy and inform SDM about housing options. Our multidisciplinary and international team aims to address the following research questions: (1) What are the mobility patterns and mobility experiences of older adults with memory problems? (2) How can an e-DSI be co-designed and adapted to integrate mobility patterns to improve autonomy? (3) What is the intention among older adults to use the e-DSI for future decision making about housing? and (4) How can this research inform SDM processes about housing decisions?

The COORDINATEs (teChnology tO suppORt DecIsioN making about Aging aT homE) project is a multipronged study with four phases, each one under the leadership of team members in a different country. Our research questions will be addressed in three countries, with a diversified sample, using a mixed methods approach to provide rich insight into mobility patterns and decision making. Using an integrated knowledge translation approach, we will use iterative end-user consultation and feedback to tailor e-DSI technology to end users in Canada, Sweden, and the Netherlands.

Canada, Sweden, and the Netherlands all are advanced economies with welfare states with aging populations. However, each country has a different health and welfare system that influences policies and services dedicated to aging at home versus in institutions [39,40]. Canada’s regime is liberal with a national health insurance system, while Sweden has a social-democratic welfare regime. The Netherlands has characteristics of both conservative and social-democratic regimes and an etatist social health insurance system. We will take into account the intra- and intercountry differences between older adults and between urban and rural environments. Data collection for each phase will be carried out simultaneously and in collaboration with all country teams. The target population and recruitment strategy will vary for the three data collection phases (see Table 1). Phase 1 will be under the leadership of Dutch team members and will assess mobility patterns and experiences of older adults with memory problems in all three countries. Phase 2 will be under the leadership of a Swedish team and will support the co-design of an e-DSI that integrates mobility patterns and experiences generated from Phase 1 and end users’ views and preferences for improving the usability and adaptability of technology [41]. Phase 3 will be under the leadership of Canadian team members who will oversee web surveys—one in each country—on the end users’ intention to use personalized e-DSIs to improve autonomy and inform housing decisions. Lastly, for Phase 4, the leadership in all three countries will triangulate and compare results to develop an action plan for scaling up e-DSI development to improve autonomy among older adults with memory problems who live at home and inform their SDM processes about housing options. Informed by the Good Reporting of A Mixed Methods Study (GRAMMS) reporting guidelines [42], and applying an integrated knowledge translation approach [43], we will explore synergies between the data, inform the design of the sequential phases, and link the findings.

An executive committee will oversee the operationalization of the project. The committee consists of the nominated principal investigator (FL), all coprincipal investigators in each country (AJ, LM, and ME), two representatives of older adults and caregivers (to be determined), one trainee (JS), and one research coordinator (DC). A steering committee consisting of team members and partners will oversee the development and implementation of all phases of the study and will meet annually in person or virtually. In accordance with the funding agencies, our research team will attend the annual meetings of the project’s funding agency, the More Years, Better Lives consortium [44].

For the final phase of the project, we will synthesize, triangulate, and compare data from all project phases and collaboratively explore privacy issues. Validation and interpretation of data will be accomplished with consensus meetings between researchers and end users [62]. Data from the three countries—Canada, Sweden, and the Netherlands—will be triangulated and compared to assess differences in contextual factors (ie, health care system, policy, geography, and culture), and we will make recommendations for technology implementation to improve autonomy and inform SDM about housing in the three countries. At the end of Phase 4, end users in each country will participate in a workshop where project results will be presented and discussed. As an output, we will acquire knowledge about differences and similarities in mobility patterns and experiences with using GPS and an e-DSI among older adults with memory problems and their caregivers, their respective assessments of its contribution to improving autonomy and emerging housing decisions, their willingness to continue using it, and factors that influence usage. After evaluating the impact of an e-DSI for continuing to age at home and for ongoing housing decisions among older adults and their caregivers, we will propose country-specific action plans to scale up e-DSIs and evaluate their implementation by home care services. We will explore opportunities to continue the consortium and form an infrastructure for continuous collaboration between the three countries.

A review for issues regarding human subjects has been obtained from four research ethics committees. Ethics approval has been obtained by the Research Ethics Committee, Faculty of Spatial Sciences, University of Groningen; Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, L'Université Laval; the Swedish Ethical Review Authority; and the Health Research Ethics Board, University of Alberta. For all phases of data collection, participants will be asked to sign an informed consent form. Where appropriate, we will ask informal caregivers to sign a consent form. This trial was registered at ClinicalTrials.gov (NCT04267484).