Technology to Improve Autonomy and Inform Housing Decisions for Older Adults With Memory Problems Who Live at Home in Canada, Sweden, and the Netherlands: Protocol for a Multipronged Mixed Methods Study

Abstract

Background Understanding the mobility patterns and experiences of older adults with memory problems living at home has the potential to improve autonomy and inform shared decision making (SDM) about their housing options. Objective We aim to (1) assess the mobility patterns and experiences of older adults with memory problems, (2) co-design an electronic decision support intervention (e-DSI) that integrates users’ mobility patterns and experiences, (3) explore their intention to use an e-DSI to support autonomy at home, and (4) inform future SDM processes about housing options. Methods Informed by the Good Reporting of A Mixed Methods Study (GRAMMS) reporting guidelines, we will conduct a 3-year, multipronged mixed methods study in Canada, Sweden, and the Netherlands. For Phase 1, we will recruit a convenience sample of 20 older adults living at home with memory problems from clinical and community settings in each country, for a total of 60 participants. We will ask participants to record their mobility patterns outside their home for 14 days using a GPS tracker and a travel diary; in addition, we will conduct a walking interview and a final debrief interview after 14 days. For Phase 2, referring to results from the first phase, we will conduct one user-centered co-design process per country with older adults with memory issues, caregivers, health care professionals, and information technology representatives informed by the Double Diamond method. We will ask participants how personalized information about mobility patterns and experiences could be added to an existing e-DSI and how this information could inform SDM about housing options. For Phase 3, using online web-based surveys, we will invite 210 older adults with memory problems and/or their caregivers, split equally across the three countries, to use the e-DSI and provide feedback on its strengths and limitations. Finally, in Phase 4, we will triangulate and compare data from all phases and countries to inform a stakeholder meeting where an action plan will be developed. Results The study opened for recruitment in the Netherlands in November 2018 and in Canada and Sweden in December 2019. Data collection will be completed by April 2021. Conclusions This project will explore how e-DSIs can integrate the mobility patterns and mobility experiences of older adults with memory problems in three countries, improve older adults’ autonomy, and, ultimately, inform SDM about housing options. Trial Registration ClinicalTrials.gov NCT04267484; https://clinicaltrials.gov/ct2/show/NCT04267484 International Registered Report Identifier (IRRID) DERR1-10.2196/19244

Inequality in housing transitions during cognitive decline

“…The prevalence of multiple moves suggests that as dementia progresses, PWD may need to further adjust their home environment to meet changing needs. With this in mind, housing decisions should be a key consideration discussed as part of treatment plans with the collaboration of caregivers, as discussed by Garvelink et al [ 6 , 65 ], Adekpedjou et al [ 11 ], Campbell et al [ 23 ], and Sturge et al [ 66 ].…”

The Role of Information and Communication Technology (ICT) for Older Adults’ Decision-Making Related to Health, and Health and Social Care Services in Daily Life—A Scoping Review

“…There are promising projects in which technology solutions have been designed in co-design processes involving different stakeholders. For instance, an international project applied the double diamond method involving the stages of generating ideas, modelling a prototype, and testing together with older adults, caregivers, representatives from technology companies and professionals from the health and social care service [ 75 ].…”

Canadian Older Adults’ Intention to Use an Electronic Decision Aid for Housing Decisions: Cross-sectional Web-Based Survey

“…We used the consensus-based Checklist for Reporting of Survey Studies (CROSS) to guide the reporting of our results [ 29 ] ( Multimedia Appendix 2 ). This project is part of COORDINATEs (Technology to Support Decision Making About Aging at Home), an international study (Canada, Sweden, and the Netherlands), whose objective is to use technology to help older adults stay at home as long as possible in a safe manner and to assist them in making informed decisions about aging at home [ 9 ].…”

“…Others consider assisted living or moving to residential health care facilities, such as nursing homes [6][7][8]. In this paper, all decisions about whether to stay home and age safely in place or to move out to a residential health care facility are referred to as "housing decisions" [9].…”

“…The accelerated digital transformation that has occurred [ 24 ] has encouraged older adults to use internet services to meet their needs in several aspects of life (eg, web-based groceries, web-based shopping, and health appointments). Because rapidly changing health conditions can quickly overtake older adults’ housing decisions [ 9 ], they need easily accessible web-based tools that can be updated to help them obtain the information they need to participate actively in SDM.…”