Best Practice Guidance
Human Interaction with Technology in Dementia

Introduction

Technology and dementia

Though the evidence is still limited, policy-makers, care professionals and researchers often see technology applications as promising solutions to promote independence and autonomy in people with dementia.

Technologies are increasingly vital in today’s activities in homes and communities. Nevertheless, little attention has been given to the consequences of the increasing complexity and reliance on them, for example at home, in shops, traffic situations, meaningful activities and health care services. The users’ ability to manage products and services has been largely neglected or taken for granted. People with dementia often do not use the available technology because it does not match their needs and capacities.

The rapid growth of the technological landscape and related new services have the potential to improve the overall effectiveness and cost-effectiveness of health and social services and facilitate social participation and engagement in activities. But which technology is effective and how is this evaluated best?

Successful implementation of technology in dementia care depends not merely on its effectiveness but also on other facilitating or impeding factors  on a micro, meso and macro level, related to e.g. the personal living environment (privacy, autonomy and obtrusiveness); the outside world (stigma and human contact); design (personalisability, affordability and safety), and ethics on these subjects.

Best Practice Guidance Human interaction with technology in dementia

This Best Practice Guidance results from the literature and field research conducted within the INDUCT project (2016-2020), a Marie Sklodowska Curie funded Innovative Training Network, which focused on technology for people with dementia in three areas (everyday life, meaningful activities and healthcare). The main aim was to develop a multi-disciplinary, intersectorial educational research framework for Europe to improve technology and care for people with dementia, and to provide the evidence to show how technology can improve the lives of people with dementia.

In the updates of the Best Practice Guidance of December 2021, December 2022 and June 2023 the recommendations of a second Marie Sklodowska Curie funded Innovative Training Network on Technology and dementia, called DISTINCT (2019-2023) were included. The main aim of this second ITN is to provide the evidence to show how technology can improve the Social health of people living with dementia by enabling them to 1) fulfil their potential on a societal level, 2) manage their own life and 3) participate in social and meaningful activities,

Regarding the research, both the INDUCT and the DISTINCT network had (have) three main objectives:

• Identifying practical, cognitive & social factors that improve the usability of technology for people with dementia;
• Evaluating the effectiveness of specific contemporary technology; and
• Tracing facilitators & barriers for implementation of technology in dementia care.

The recommendations for improving the usability, effectiveness and implementation of technology in dementia which are presented in this Best Practice Guidance are meant to be helpful for different target groups: people with dementia, their formal and informal carers, policymakers, designers and researchers. For this reason representatives of these target groups were consulted and involved throughout the INDUCT and DISTINCT project.

Patient and Public Involvement in INDUCT

by Kate Shiells, INDUCT ESR

The importance of Patient and Public Involvement (PPI) in dementia research has been highlighted at a European level by Alzheimer’s Europe as a way in which to enhance the ‘transparency, validity and legitimacy’ of research (Gove et al., 2017). PPI has been embedded throughout the INDUCT project. For instance, INDUCT was initially conceived following consultations with people with dementia and carers, who highlighted the need for the development of effective, user-friendly technologies that meet their needs in a range of environments. In addition, via Alzheimer’s Europe the European Working Group of People with Dementia (EWGPWD) was consulted and provided feedback with strong support for the proposal.

Since taking up their posts across Europe, Early Stage Researchers (ESRs) have then continued to involve people with dementia, their formal or informal carers and other relevant stakeholders throughout the research cycle. In particular, the European Working Group of People with Dementia (EWGPWD) has been crucial in the design, dissemination and implementation of projects. Members were present at INDUCT schools in the first and second year, where they advised ESRs on how to engage and recruit people with dementia in research, for example, by using dementia-friendly language in information sheets and consent forms. A subsequent meeting was arranged with the EWGPWD in the third year of the project to share preliminary results and gather their ideas on how best to implement and disseminate findings to appropriate stakeholders.

There are also numerous specific examples of stakeholder engagement activities within each individual project, which have assisted ESRs to develop their recommendations according to each of the three INDUCT objectives.

‘I Think I Know My Own Mind’ video – ESR 4

• ESR 1 conducted PPI groups with people with dementia and their carers to elicit their views on empowerment in relation to surveillance technologies, using results to form recommendations on the effectiveness of this technology (Objective 4).
• ESR 3 and ESR 4 shared data from their research on the characteristics of Everyday Technologies and the interplay with participation in public space with a PPI group of people with dementia who provided alternative interpretations of the data, leading to recommendations on the usability and implementation of these technologies (Objective 3 and 5).
• ESR 6 carried out consultations with a PPI group, exploring their opinions of four art applications. This resulted in the selection of two art applications to be used in the proof-of-principle study, examining the barriers and facilitators of implementing digital art in touchscreen devices in nursing homes (Objective 5).

Finally, second-level partners in industry have also provided valuable PPI input. For example, ESR 7 collaborated with SilverFit in the Netherlands, a company producing innovative technology to improve elderly care, who provided insight into the implementation of exergaming systems, leading to a publication on the ‘do’s and don’ts of exergaming for people living with dementia’ (Objective 5).

Promoting Social health by means of enabling technology: an Occupational therapy perspective

by DISTINCT ESRs Pascale Heins and Wei Qi Koh, WFOT representatives Ritchard Ledgerd and Claudia von Zweck, and Louise Nygård, Karolinska Institute

Occupational therapy promotes engagement in activities that people need or want to do in all domains of daily life. With this role, assistive technology is a key contributor in occupational therapy for facilitating management of such activities. In today’s digitalized society, technologies are interwoven into all activity domains. Optimising the potential for social engagement of people living with dementia therefore requires a clear understanding of how and when technology can be used to promote social health, i.e. to enable people with dementia to (1) fulfil their potential and obligations, (2) manage life with some degree of independence, and (3) participate in social activities. Therefore, this guidance provides recommendations to improve the usability, effectiveness, and implementation of technology in dementia care and research, incorporating amongst others the occupational therapy perspective.

From an occupational therapy perspective, activities are both a means and an end to facilitate people with dementia’s social health. This means that occupational therapists work on mediating both the process of activity performance, and the outcomes of their participation in social activities that are meaningful to an individual. Activities are always performed within, and in interaction with, a context. This entails carefully deliberated attention to the transactions that unfold when people engage in activities in their daily life context. These key features of an occupational therapy perspective are also of importance when we strive to develop knowledge about how to support people with dementia through the use of technologies. It is not enough to evaluate only outcomes of a technology intervention. The ‘means’ (process) is equally important, where considerations regarding individuals’ abilities, preferences, values, and disease trajectory, should be taken into account. Considering this, it is for current and future research in the field of technology and dementia care valuable to include people with dementia as both research participants and co-researchers, based on their expertise by experience.

Overall, taking the occupational therapy perspective into account, researchers, healthcare professionals and technology designers should aim to optimise the fit between: (1) a person with dementia’s individual abilities and desire to engage in social activities, (2) the characteristics of the activity, (3) the studied or applied technology, and (4) the context. Moreover, as all of these elements interact with each other and may change throughout the course of dementia and the individual’s life span, we need to be continuously prepared to revise and adapt this fit.

Reference

Dianne Gove, Ana Diaz-Ponce, Jean Georges, Esme Moniz-Cook, Gail Mountain, Rabih Chattat, Laila Øksnebjerg & The European Working Group of People with Dementia (2017): Alzheimer Europe’s position on involving people with dementia in research through PPI (patient and public involvement), Aging & Mental Health, DOI: 10.1080/13607863.2017.1317334