Involvement of People With Dementia in the Development of Technology-Based Interventions: Narrative Synthesis Review and Best Practice Guidelines

Abstract

Background Technology can be helpful in supporting people with dementia in their daily lives. However, people with dementia are often not fully involved in the development process of new technology. This lack of involvement of people with dementia in developing technology-based interventions can lead to the implementation of faulty and less suitable technology. Objective This systematic review aims to evaluate current approaches and create best practice guidelines for involving people with dementia in developing technology-based interventions. Methods A systematic search was conducted in January 2019 in the following databases: EMBASE (Excerpta Medica database), PsycINFO, MEDLINE (Medical Literature Analysis and Retrieval System Online), CINAHL (Cumulated Index to Nursing and Allied Health Literature), and Web of Science. The search strategy included search terms in 3 categories: dementia, technology, and involvement in development. Narrative synthesis wove the evidence together in a structured approach. Results A total of 21 studies met the inclusion criteria. Most studies involved people with dementia in a single phase, such as development (n=10), feasibility and piloting (n=7), or evaluation (n=1). Only 3 studies described involvement in multiple phases. Frequently used methods for assessing involvement included focus groups, interviews, observations, and user tests. Conclusions Most studies concluded that it was both necessary and feasible to involve people with dementia, which can be optimized by having the right prerequisites in place, ensuring that technology meets standards of reliability and stability, and providing a positive research experience for participants. Best practice guidelines for the involvement of people with dementia in developing technology-based interventions are described.

Doing their damnedest to seek change: How group identity helps people with dementia confront public stigma and maintain purpose

“…For example, Oliver et al (2020) describe the role of dementia-diagnosed individuals in a public and patient involvement forum, giving direction to dementia care within the United Kingdom, especially for those with young onset dementia. Both Rai et al (2020) and Hassan et al (2017) consulted with people with dementia regarding the use and appropriateness of user-friendly technologies and electronic devices. These studies not only allowed people with dementia the opportunity to provide instructive insights but also the very act of participation added to individual well-being and a feeling of value.…”

Technological Solutions for Diagnosis, Management and Treatment of Alzheimer’s Disease-Related Symptoms: A Structured Review of the Recent Scientific Literature

“…According to the best practice guidelines for the involvement of people with dementia in developing technology-based solutions [ 33 ], a rigorous field-testing phase followed by observations by an expert team, exploration of the main methods for collecting feedback from PwAD and offering participants the opportunity to learn a new skill through their commitment may enhance patients’ wellbeing and improve empowerment. The co-creation of technological solutions in research by using brainstorming, focus groups, questionnaires, detailed interviews and surveys with all relevant stakeholders, including physicians, informal caregivers, staff members and technology developers, make the evaluation of the impact of the technology more effective and ensure that the system meets a high standard of sustainability and reliability in the diagnosis, management and treatment of PwAD.…”

Toward the Integration of Technology-Based Interventions in the Care Pathway for People with Dementia: A Cross-National Study

“…With regards to the late stage of dementia, for safety reasons, formal/professional caregivers may have to use the embodied conversational agent within a supervised environment (i.e., in nursing homes or daycare centers) because dramatic swings in mood and behavior can be frequent, and it is not predictable how individuals react in front of an unknown virtual assistant [ 19 ]. From a technical point of view, in the future, personalization may be completely individually tailored for each user or even more to their current status at the moment of interaction [ 47 ]. In this setup, telemetry data is used to give a dynamic response to the user’s status quo [ 48 ].…”