Best Practice Guidance
Human Interaction with Technology in Dementia

themes: Dementia

Practical, cognitive & social factors to improve usability of technology for 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. This section provides recommendations to improve the usability of technology used in daily life, for meaningful activities, in healthcare and in the context of promoting the Social Health of people with dementia.
Technology in everyday life

Consider selling empowering products for people with dementia and carers and avoid stigmatizing stereotypes

Guidance

Providers and marketers of ST should not communicate a wanderer with dementia discourse. Rather they should focus on useful person-centred products and communicate this in a non-stigmatising way towards family carers and people living with dementia in order to provide empowering products.

Explanations and examples

Surveillance Technology (ST), such as GPS tracking devices are used as a resilience tool to increase the safety and independence of people with dementia that portray people with dementia to sell such technologies in a way that encourages stereotypes and contribute to a misunderstanding of dementia. This in turn could also impact technology development. This qualitative research undertook three studies of production (who made what), audience reception (what do users need) and textual analysis (what media techniques are used to attract attention) focused on the UK, Sweden and the Netherlands. The production study examined 242 websites that sell ST and a wanderer discourse with dementia was found. These websites give minimum representation of people with dementia using technology but represent overburdened younger-female carers, who are in need for a locating safety product to covertly use for wandering people with dementia, children and pets. Relying on stereotypes and “not so useful” technology will hinder resilience for people with dementia. Rather, it may imply the continuous stigmatisation that occurs when people with dementia are stereotyped and disregarded as human technology users.

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Consider undesired side effects of dementia prevention technologies and discourses

Guidance

Public health policy should more fully consider the undesired side effects of dementia prevention technologies and discourses which may reinforce the fear of dementia and imply a moral responsibility on people who cannot maintain cognition in later life due to the progression of the condition.

Explanation and Examples

A review of the literature shows there is little evidence for the effectiveness of brain training to prevent dementia. Furthermore, ethnographic research has generated evidence that engagement with it can act as a form of social exclusion by separating older people into those who have ‘successfully cognitively aged’ and those who have not. Indeed, the promotion of this technology implies an individual responsibility to stay cognitively healthy, implicitly reinforcing anxiety and blame around the condition and people who live with it. These side effects can reinforce the exclusion of people with the condition.

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Adaptations to enable more accessible public transport

Guidance

Public transport providers and policy-makers should be more aware of barriers to access and consider adaptations to enable better accessibility for people with cognitive issues or disabilities living with dementia.

Explanation and Examples

Everyday Technologies are required to access public transport (e.g. ticket machines, GPS, travel updates on smartphones). Research from the UK and Sweden explored how access to public transport can enable or disable a person’s ability to participate in places and activities, within public space. The UK study involved 64 older people with dementia and 64 older people with no known cognitive impairment. The Swedish study included 35 older people with dementia and 34 older people with no known cognitive impairment. Transportation centres were one of the places most frequently abandoned over time by the Swedish group of people with dementia. In both the Swedish and UK samples, compared with people without dementia significantly fewer people with dementia were drivers, so may have increased need to use public transport. Research shows they face increased barriers to using the Everyday Technologies that are required to access those services. The research is supported by consultations that were performed across London with community-based groups of older people with and without dementia, and the European Working Group of People with Dementia. The consultations revealed not only physical but also cognitive barriers to using Everyday Technologies to access public transport.

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Addressing stigma through online and offline service options

Guidance

Service providers should counter the stigmatising effect of not having access to, or not being a skilled user of, Everyday Technologies, for people with dementia and consider strategies to enhance participation, providing offline and online choices for all public services.

Explanation and Examples

Interviews were performed with 128 older people with and without dementia in the UK, and 69 people with and without dementia in Sweden. In both the UK and Swedish studies, people with dementia reported significantly lower use of Everyday Technologies compared to older people without dementia. People with dementia also reported significantly lower participation in places and activities within public space. Reduced ability to use Everyday Technologies was linked to reduced participation in places visited and activities within public space for people with dementia. Community-based consultations with older people with and without dementia across London showed that Everyday Technologies can provide opportunities to participate in services, e.g. eHealth and online banking. However, without face-to-face or written options (e.g. offline), people with dementia are at risk of stigma associated with digital exclusion. Barriers to participation in their everyday lives can lead to social isolation.

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Design easier to use everyday ICTs (Everyday Information Communication Technologies)

Guidance

Technology developers should be aware that the challenge of using everyday information communication technologies can be high for older adults, including some people with dementia. They should use inclusive design that addresses cognitive useability to reduce the level of challenge so that more people with cognitive impairments can use ICTs.

Explanation and Examples

A standardized questionnaire investigated how 35 people living with dementia and 34 people with no known cognitive impairment in Sweden perceived their ability to use 90 ETs on a 5 step rating scale. This data was analysed (in a Rasch model) to produce a challenge measure for each of the 31 EICTs, showing how difficult or easy they were to use. Landline telephone was the easiest EICT to use. Scores for smartphone functions (make calls, receive calls, alarm, camera) were at the easier end of the challenge hierarchy and comparable to (or lower than) the challenge of the same functions on a push button mobile phone. These smartphone functions were less relevant to the group of people with dementia than the group without. Using a computer for the full range of functions (shopping, banking, email etc.) scored in the top half of the challenge of the hierarchy and using a tablet to search the web was most difficult. No other tablet functions (i.e. banking, email) could be scored since not enough people considered those functions relevant. Several smartphone functions (i.e. game, social media, transaction) could not be scored for the same reason

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Technology for meaningful activities

Assessing the Ability to Use Everyday Technologies by self-perceived reports as well as observations

Guidance

To understand the ability of the elderly with cognitive impairments to use everyday technology observe the interaction but also ask about their views.

Explanation and examples

Via an observation (guided by the META), the person-technology interaction can be described in detail, e.g. does the person press buttons/the screen with an adequate force or are steps performed in a logical order. This can help to determine which elements of a specific technology are causing problems and might be particularly useful for designing intervention and the development of technology. Through a self-perceived report (S-ETUQ), the individual can reflect on a wider range of technologies and the impact of technology use to perform well in (in relation to) everyday life can be depicted. For example, if someone has problems using the ticket machine for public transport or the ATM, this might impact participating in society; if the individual has problems with using the dishwasher or vacuum cleaner, this might impact the hygiene and well-being at home.

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Health care technologies

Consider user-centred design in the development of computer-based cognitive rehabilitation programs for people with dementia

Guidance

User-centered design should be considered in the development of any technology or computer-based program for cognitive rehabilitation in people with dementia.

Explanation and Examples

User-centered design is a methodology applied in the development of programs or new technologies for cognitive rehabilitation in people with dementia. This design takes into account the target population from the beginning to the end of the development process, with the aim of investigating their needs and expectations, developing a prototype that meets these needs and evaluating the final prototype based on usability and user experience criteria.

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Social Health Domain 3: Technology to promote social participation

Include social interaction elements in technological interventions that aim to promote social participation

Guidance

Technological interventions aiming to promote social participation among older adults (with and without dementia) should incorporate a social interaction element.

Explanation and Examples

The number of people with dementia who live in the community and are socially isolated is growing. Social isolation can negatively affect health and well-being. Therefore, psychosocial interventions are needed to promote the social participation of people with dementia living in the community. A systematic literature review was conducted to explore the effects of technological interventions on the social participation of older adults with and without dementia. Findings from 36 studies suggest that technological interventions that include a social interaction element (e.g. face-to-face contact, phone calls, text messages) are successful in promoting social participation among older adults. Examples are group interventions that provide regular interactions within a group, or interventions that enable to connect and communicate with other people (e.g. family, friends, or other older adults).

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Evaluating the effectiveness of specific contemporary technology

The rapid growth of the technological landscape and related new services have the potential to improve the 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? This section provides recommendations to evaluate the effectiveness of technology in daily life, meaningful activities and healthcare services as well as of technologies aimed to promote the Social Health of people with dementia. Examples of useful technologies in some of these areas are provided.
Technology for meaningful activities

Technical problems should be solved before evaluating the effectiveness of new tablet interventions for people with dementia

Guidance

Pilot studies should be conducted to help inform and reduce technical problems and improve accuracy prior to evaluating the effectiveness of new tablet interventions

Explanation and example

Our feasibility study of FindMyApps, a digital programme helping people with dementia to find useful apps for self-management and meaningful activities, showed that when people experienced technical problems they were sometimes not able to provide useful feedback about FindMyApps. For instance, some participants did not use the intervention anymore after they encountered technical problems. Even though a development and pilot study were conducted technical problems still occurred, such as: apps not being available anymore, explanation videos which did not work, personal settings not being saved, the button to go back being difficult to find, and links that did not work. To ensure that technical problems are resolved timely and do not interact with the evaluation of the tablet intervention, it is important to monitor for technical barriers by regular contact with people using the intervention in evaluation studies.

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Pay attention to contextual, implementation, and mechanisms of impact factors when evaluating technological interventions

Guidance

When evaluating the benefits of technological interventions for people with dementia and their carers it is recommended to conduct a process evaluation to understand the possible influence of contextual, implementation and mechanisms of impact factors that may have influenced the intervention outcomes. This will also provide useful information on the conditions for successful implementation of the intervention.

Explanation and example

In our randomised controlled exploratory pilot trial into the FindMyApps programme, a tablet-based selection tool and training to help people with dementia to find apps for better self-management and meaningful activities, we conducted a process evaluation based on the British Medical Research Council’s (MRC) guidance for process evaluation of complex interventions (Moore et al., 2015).

This framework highlights the possible influence that contextual, implementation and mechanisms of impact factors may have on intervention outcomes. The process evaluation in the FindMyApps study provided very relevant information. For instance, with regard to contextual factors we found that it is important that the person with dementia has someone who is easy to approach and who can help them in case of practical problems, and that a helpdesk is in place for more complicated questions and technical problems.

With regard to implementation, it proved important to check if and how much a participant had experience in working with technological devices, and to adapt their training accordingly. Additionally, it proved necessary to personalise the approach to a participants’ awareness of their deficits. This was largely because some people with dementia had a more accurate understanding of their abilities and limitations with respect to their deficits than others. With regard to mechanisms of impact, we found that users who regularly practiced and who’s caregivers helped them by means of the errorless learning method learned to use FindMyApps easier than users who practiced less and who’s caregivers were less active in guiding them by using errorless learning.

This information is not only relevant for the outcome evaluation, but also to get insight into conditions for successful implementation of FindMyApps.

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In order to help people with dementia and their carers find dementia-friendly apps for self-management and meaningful activities a selection tool is desirable

Guidance

People with dementia can have difficulty finding apps for self-management, meaningful activities and social participation that match their needs, interests and abilities. A tool that helps them find such apps is therefore recommended.

Explanation and example

People with dementia often experience unmet needs in their self-management, meaningful activities and social participation. Apps and technological interventions can potentially help them fulfil these needs and also decrease the burden for caregivers.

The last decade many apps have been developed that can support people with dementia in managing daily life, engaging in activities and staying in touch with their social network. However, people with dementia may have difficulty finding apps that match their needs, interests and abilities, FindMyApps is a selection tool that aims to help people find, download and use apps for self-management and meaningful activities, which are dementia-friendly and meet their needs, interests and capabilities.

A randomized controlled exploratory trial into the effectiveness of FindMyApps showed that people with dementia who were offered this tool more frequently downloaded and used apps for self-management and meaningful activities than people who did not have access to this tool. This confirmed the usefulness of the tool. Therefore, a tool such as FindMyApps is recommended for people with dementia and their caregivers to ease the search for suitable apps.

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Consider potential benefits in family carers when persons with dementia use technology

Guidance

When persons with dementia use technology for meaningful activities this may not only impact their own quality of life but also the well-being of their (primary) family carers.

Explanation and example

In the exergaming project, people with dementia were engaged in an exergaming activity or activities as usual in day care centres. We studied the effects on persons with dementia as well as on their family carers. In carers, positive effects were found in favour of the exergaming intervention, i.e. on the carers’ distress related to their relative’s neuropsychiatric symptoms and the carers’ sense of competence (after a three months intervention period).

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Health care technologies

Consider the factors that potentially determine adherence to a computer-based cognitive rehabilitation program to generate corresponding adaptations

Guidance

When evaluating adherence of people with dementia to a computer-based cognitive rehabilitation program, sociodemographic, cognitive, and psychological factors should be taken into account.

Explanation and example

When we consider evaluating the adherence of people with dementia to a computer-based program for cognitive rehabilitation, it is important to consider sociodemographic (age, sex, educational level), cognitive (memory, attention, executive function) and psychological factors (level of motivation, expectations, previous computer use).

For this purpose, a periodic evaluation will help to evaluate these factors and their relation to the amount and the time that a person spends in using a computer program for cognitive rehabilitation. In this way, significant modifications could be made to the program, so that the program meets the needs of people with dementia.

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Social Health Domain 3: Technology to promote social participation

Measure different dimensions of social participation when evaluating the effect of social technologies

Guidance

Make clear how you define the outcome of social participation and assess different dimensions of this multidimensional concept when evaluating the effects of social technology on social participation.

Explanation and examples

A systematic review was conducted to gain insight into the effects of technological interventions on the social participation of older adults. A total of 36 studies was included in a narrative synthesis. A major finding was the inconsistent use of terms and concepts related to social participation among studies. Future studies should make the applied definition of social participation explicit to allow for comparison of research results.

Furthermore, a majority of the included studies measured one specific dimension of social participation, i.e: social connections (e.g. by measuring loneliness or social isolation). However, social participation is a multidimensional concept. It is not only about social connections, but also about being engaged in meaningful activities that provide social interaction with others in the community (Levasseur et al., 2010). So far, there is no outcome measure that covers all dimensions of social participation. Therefore, it is recommended to combine quantitative outcome measures with qualitative data collection methods when assessing the effect(s) of technology on social participation. In the future, research should focus on developing and validating an outcome measure that covers different dimensions of social participation.

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Implementation of technology in dementia care: facilitators & barriers

Successful implementation of technology in dementia care depends not merely on its effectiveness but also on other facilitating or impeding factors 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.  This section provides recommendations on the implementation of technology in everyday life, for meaningful activities, healthcare technology and technology promoting Social Health.
Technology in everyday life

Involve diverse groups of stakeholders and consider existing contexts when designing, developing and using Everyday Technologies

Guidance

Technology companies and developers should involve more diverse groups of people living with dementia or caring for people with dementia, in all stages of design, development and implementation of technologies. They should also consider existing contexts before introducing them.

Explanation and Examples

Consultations explored the ways in which Everyday Technology can be both an enabler and disabler, among people living with dementia, or providing care for people with dementia, from minority and migrant communities within the EU (Germany and Greece). The consultations highlighted the need for more contextually-relevant Everyday Technologies. This includes consideration of existing contexts before introducing technologies or technology interventions e.g. eHealth, finance or social apps. Consultees reported the need to identify existing levels of access and ability to use Everyday Technologies (e.g. possession of technological devices and digital literacy etc.) as well as access to infrastructures to support their use (e.g. internet connection, battery charging facilities and face-to-face support). Everyday Technology use is influenced by contextual and cultural factors. Technology companies and developers need to involve a more diverse group of people living with dementia or caring for people with dementia (e.g. from different cultural and socio-economic backgrounds, urban and rural environments etc.) throughout all stages of technology development.

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Technology for meaningful activities

Start making eHealth financing and business plans at the start of the development phase

Guidance

To ensure that the eHealth interventions for caregivers of people with dementia will continue to be available, supported, updated and compatible with changing software and hardware requirements, financing and business plans should be developed from the beginning.

Explanation and examples

A mixed-methods study followed up on the 12 publications included in Boots et al.’s (2014) widely cited systematic review on eHealth interventions for informal caregivers of people with dementia, to explore implementation into practice. Publicly available online information, implementation readiness (ImpRess checklist scores), and survey responses were assessed. The majority of survey respondents identified commercialization and having a business plan as facilitators to implementation. There was little evidence for any of the 12 applications being put into practice.

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Implementation of technology in dementia care: facilitators & barriers

Guidance

Ensure new technology is compatible with a range of relevant platforms to promote implementation.

Explanation and examples

Findings from the feasibility trial showed that people with dementia use a range of devices with various software versions (e.g. smartphones, touch-screen tablets, and personal computers) to access apps and other services. New technology which aims to be compatible with these different devices, can lead to increased uptake and may contribute to successful implementation.

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Social Health Domain 3: Technology to promote social participation

Make sure social robots work well with residents and consider practical challenges when implementing social robots in nursing homes

Guidance

Understanding how social robots positively impact nursing home residents as well as analysing practical challenges are important when implementing robotic assistive technology in nursing homes

Explanation and examples

An important facilitating factor to the acceptance of social robots in nursing homes is understanding and seeing how social robots positively impact residents, for example by improving the communication, decreasing loneliness, providing joy to residents, calming agitated residents or generally increasing their wellbeing. Understanding these benefits will facilitate the acceptance of social robots by staff as well as by relatives, but is also important for the resident to accept the social robot, as their acceptance will be influenced by the views and attitudes of staff and relatives.

On the other hand, one of the key hindering factors to the acceptance of social robots in nursing homes are practicalities of everyday life in the nursing home, such as storage, hygiene, finding a quiet place, scheduling time for robot use or the need to charge the robot.

We conclude, that applying an acceptance model of social robots (here the Almere Model) is an interesting and feasible way to trace facilitators and barriers of implementation of social technology in nursing homes, where involvement in social activities and enhancing positive experiences are important foci of interventions to improve social health.

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Loneliness should be included in future technology intervention studies as an outcome in order to study the effect of active assisted living (AAL) technologies on loneliness of people with dementia in long-term care

Guidance

Implementing assistive technology could be promising in long-term care to address loneliness in dementia, but further studies are needed to tailor assistive technology to people living with dementia in different care settings and to investigate its effect on loneliness.

Explanation and examples

Active & Assisted Living (AAL) technology aims to support coping with the consequences of dementia. A scoping review was conducted to learn if and how AAL addresses loneliness in people living with dementia in long-term care. Although, only one study focused directly on the impact of AAL technology on loneliness, findings suggest that AAL were used in the context of psychosocial interventions and proved to have had an impact on loneliness in people living with dementia. It remains unclear why loneliness was almost never included as an outcome in technology studies. Since we were not able to derive clear effects of assistive technology on loneliness from the included studies, we recommend using loneliness outcome measures in future intervention studies into AAL technology.

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