Best Practice Guidance
Human Interaction with Technology in Dementia

Guidance

During the development or use of technological devices, the individual needs of the person with cognitive impairments (e.g. dementia or MCI) and carer should be considered. This includes not only everyday technology, but also surveillance technology (ST) and technology used during cognitive training sessions. Increased awareness and offered assistance is recommended.

Explanation and Examples

People with dementia tend to face more and other difficulties than people with MCI when using relevant everyday technologies such as cash machines, calling or texting with a cell phone or using a DVD player, and thus need more assistance in technology use. This may also be the case with ST and technology used for cognitive training.

For example, ST are often presented as a neutral technology, which enables carers to minimise risk. However, the views of users have not been sought by ST developers, which limits the usefulness of ST and suggests the need for the empowerment of user groups. Therefore, a study of audience reception was undertaken through focus groups, online discussions (Netherlands) and PPI (UK). Hereby people with dementia could speak for themselves, which has allowed their needs to be compared with carers. There was no clear recognition that such needs differed between people with dementia and carers, and it has not previously been recognized that this leads to a mismatch between a user’s situation and the product design and how this plays out in the acceptance and use of ST. Although, carers and people with dementia have not yet reached an agreement on the privacy debate and on how the media should portray dementia, it is clear that carers often tamper with ST to make up for a lack in current designs. The results suggest that ST are being resold or rebranded by providers to use for dementia, whilst users may experience physical and cognitive barriers to using such technologies for safety reasons.

Regarding technology for cognitive training: As older people have little experience with technological devices, and so may experience problems, professionals involved in cognitive training should monitor training sessions from the outset. The professional must observe and ensure the ability of the older person to understand the instructions given through the technological device, so that the person can really benefit from the cognitive training by computer. For example, in sessions with GRADIOR, a cognitive rehabilitation program, there is always a professional in charge who helps older people to understand the exercises they may experience difficulty with.

Guidance

To improve usability design of the technology should be developed specifically on the characteristics of the person with dementia, with respect to vision, auditory and cognitive capacities.

Explanation and Examples

Dementia is mainly suffered by elderly people. It´s well known the visual and auditorily perception changes. Shapes, colours, glares, temporal frequency of stimuli, visual acuity, and relevant visual stimuli can be bad perceived. Therefore, the design of any technology should be focused and fitted to these perceptual changes. Consequently, it is important to increase the lighting of the context of the task, the level of contrast and font size.

Equally elderly people might suffer impaired hearing, especially in sensitivity to high frequencies, discrimination of tones and differentiation of the speech of the background noise. Therefore, it is necessary for any technology to increase the intensity of the stimuli, control the background noise, avoid stimuli with high frequencies and adapt the speed of the words.

The design of the technology should take into account the cognitive impairment of a person with dementia (type, level, and deficits associated with impairment). Technology for rehabilitation must comprise different difficulty levels, take slow processing speed into account by extending response intervals of exercises, and an increase the variety in types of exercises.

The degree of usability of a technology will influence the user´s experience, generating a degree of satisfaction in the person with dementia that will affect their level of motivation to continue using a rehabilitation program such as Gradior.

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.

Guidance

To better understand how digital Patient and Public Involvement (e-PPI) and blended approaches (hybrid digital and face-to-face PPI) in dementia research can be better facilitated, it is recommended to use the E-nabling Digital Co-production framework.

Explanation and Examples

Qualitative research showed that the E-nabling Digital Co-production framework (see Figure 1) is useful for researchers, PPI coordinators and public contributors in advancing understanding of the challenges and opportunities provided by e-PPI and blended (hybrid) approaches. The framework explores preferences and implications of using different modalities of PPI and it can be useful for specific populations and contexts, for example in dementia technology research.

In this context, e-PPI needs to optimise engagement by taking into account participants’ abilities to remember instructions on how to join the e-meeting, their levels of attention and concentration, or the need for explicit cues to the speaker. The level of support must be determined which requires specialised training for facilitators or additional supporters during the meeting.

Facilitators should be aware that online meetings may deprive caregivers of respite and support that would be present face-to-face, and may exclude those who live alone or need more support.

Some of the opportunities of e-PPI are related to removing geographical constraints allowing wider participation and saving resources in terms of time, not having to travel to meetings, arrange venues, catering or other coordination such as transporting PPI representatives.

Guidance

Digital Patient and Public Involvement (e-PPI) provides opportunities, for example, in terms of saving time, not having to travel to meetings, and fewer organizational tasks, such as transporting PPI representatives to the meeting venue. However, to optimize digital Patient and Public Involvement (e-PPI) in dementia research, technological, involvement ability, resources and ethical and welfare conditions should be taken into account.

Explanation and Examples

When applying digital PPI in dementia research it is important to consider four key areas of conditions. Taking these areas into account will allow identifying improvements that can be made to e-PPI to make it more effective and efficient, and problems avoided (see also Figure 2):

1. Technological: refers to constraints, preferences, and opportunities of the used technology.
   Improvements: virtual platforms must be considered as part of the toolkit to perform PPI; hybrid options (digital and face-to-face) must be provided.

2. Resources: is associated with personal resources such as fatigue or personal resilience; professional resources such as increased demands on conducting PPI online; and other resources such as costs of coproduction platforms, phone credit, printing, software, or budget for more frequent meetings.
   Improvements: make sure additional resources are included such as technical support staff or reimbursements for online meeting costs; face-to-face training could help participants to learn how to use the platform.

3. Involvementability: refers to requirements that are related to the success of a design task or process. How involvement differs in a digital space or how it can be translated to different populations online.
   Improvements: smaller groups can help prevent attention wandering; limit the number of people on the screen.

4. Ethical and welfare: describes aspects such as the welfare of public contributors (people with dementia and caregivers), digital exclusion, impact on social communication, data security, etc.
   Improvements: consider the configuration and history of the group when choosing which platform and approach (online, face-to-face or blended) to use; follow-up of public contributors’ welfare

Guidance

The choice for a tablet-based intervention should be based on an assessment of the characteristics of the tablet-users and their specific needs and potential to benefit from the intervention. Care providers should consider prioritizing people with MCI and younger people with MCI/mild dementia to receive tablet-based interventions.

Explanation and Examples:

Evidence from the FindMyApps project showed that on average, tablet interventions could be effective to promote participation in social and other meaningful activities. However, the results also showed that tablets seem to be particularly effective for people with a diagnosis of MCI compared to those with a diagnosis of mild dementia. Regardless of the diagnosis, the results also suggest that younger people with MCI/mild dementia also benefit more from tablet-based interventions than older people. The choice for a tablet-based intervention should therefore be based on an assessment of the tablet-user characteristics, in addition to their needs and potential to benefit from it.

Guidance

The ecological validity and cultural context in which the technology will be implemented should be taken into account, to ensure it is applicable to the ‘real life situation’ of the person with dementia

Explanation and example

When cognitive rehabilitation is applied to people with dementia, it is necessary to consider the ecological validity of each tool or instrument used to perform cognitive rehabilitation, training or stimulation. Ecological validity is determined by the ability of those tools, instruments or techniques used for cognitive training to be transferred to the patient’s daily life. Therefore, the patient may feel that using these techniques or tools in their daily lives can bring them benefits and influence their daily life, “beyond the rehabilitation session”. For example: Gradior includes images of real objects which are well-known to the users. These objects are close to those of real life, among others: calculation exercises associated with real adult life (shopping at a supermarket), presents quizzes of daily activities (prepare a specific recipe). New technologies for rehabilitation or cognitive training should consider ecological validity as their main objective otherwise it may not be appropriate for the person with dementia who uses it.

The context is a factor that must be considered in the design of new technologies, that is, it is not enough to delimit the population and its characteristics. For example: a technology may be applied in an urban context but not necessarily in a rural one, due to the difficulties that this context may have in terms of the existence and scope of communication systems (internet connection, presence of devices, etc.).

Consequently, Gradior was developed free of contents. This means that it is easy to change the contents of the software and objects interacting with the person with dementia. In this way, it can be fitted to different environments in an easy way. It is necessary that the exercises and objects have significance to the users.

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.

Guidance

Meaningful activities for people with dementia have proven value for their social health. Exergaming is an innovative way of exercising in a gaming environment. This movement activity may be experienced as meaningful by the persons with dementia, is considered fun to do and has benefits for them as well as for their relatives.

Explanation and example

Exergaming was compared to usual activities in a cluster Randomized Controlled Trial among day care centres for people with dementia. In this study exergaming consisted of interactive cycling using a stationary bicycle (i.e. home trainer) connected to a screen. The screen displays various routes which the participant can select and this mimics the experience of cycling outside, thus offering simultaneous physical and cognitive stimulation.

Positive effects in favour of exergaming were found on cognition and social functioning in people with dementia and on carers’ distress related to their relative’s neuropsychiatric symptoms and the carers’ sense of competence. Furthermore, persons with dementia, family carers and staff were satisfied with the exergaming intervention.

Exergaming can thus be considered a meaningful activity, and a good alternative when outdoor physical activities are not possible because of weather conditions or safety risks (fall incidents, wandering).

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.

Guidance

Care providers should consider providing people with mild cognitive impairment (MCI) or mild dementia with the FindMyApps tablet-based intervention, or even a usual tablet without FindMyApps if accompanied with appropriate training, as an effective way of improving their social participation.

Explanation and Examples:

Evidence from the FindMyApps project has identified increases in social participation associated with use of the tablet-based FindMyApps intervention or a usual tablet without FindMyApps, when accompanied by appropriate training. The improvements were slightly more pronounced with the FindMyApps intervention than with a tablet without FindMyApps, particularly with respect to the diversity of social activities in which people participated (as opposed to the overall frequency of social activities). Evidence was also found for people with MCI/mild dementia experiencing apathy prior to receiving the interventions having better quality of life outcomes when they received FindMyApps. All improvements found were small.

Caregivers’ sense of competence refers to how well caregivers feel they can provide care for their family member with dementia or friend, and for how long. Evidence from the FindMyApps project has identified that the FindMyApps intervention is associated with a greater sense of competence for caregivers (moderate effect size) of community-dwelling people with MCI/mild dementia than a normal tablet and should therefore be implemented by preference to a normal tablet.

Guidance

Cognitive rehabilitation technology should be accessible physically and in terms of cost, taking into account the mobility problems and the low income of many older people with dementia. To increase the accessibility of technology it is necessary to deliver it at low cost or promote the financing of licenses for people with dementia.

Explanation

Programs for cognitive rehabilitation for people with dementia may be inaccessible due to high costs or difficulty getting access to the location that provides the program because of mobility issues. Technology associated with cognitive rehabilitation or stimulation should be accessible to all those who could benefit from it. Technologies for cognitive rehabilitation should be accessible at home, especially in people living in rural areas or with mobility problems who are not able to travel to a center to perform cognitive rehabilitation.

Guidance

The level of cognitive impairment must be taken into account in the design of technology because people with severe dementia have different needs vs. mild dementia.

Explanation and Example

People with severe cognitive impairment will have more problems learning to use different and new devices. They need more explanation and a longer learning time, due to limited cognitive capacities. For example, the clinical experience with Gradior shows that people with moderate and severe dementia should have the therapist as a permanent guide. According to this, Gradior possibly would have to adopt new systems and tools to become effective in people with moderate and severe dementia, and in turn, allow a level of autonomy of the person with dementia who uses this technology. Indeed, the help of a therapist in the first steps of applying a technological-based therapy is strategic for implementing and accepting the approach.

Guidance

To provide informal caregivers of people with dementia living in remote areas with alternative support services, e-learning interventions can overcome some constraints of in-person services, such as costs and transport to the venues, and might increase the reach of services. However, these e-learning interventions should follow a set of recommendations tailored to the rural context in order to be effective.

Explanation and Examples:

E-learning interventions have proven effective in helping caregivers of people living with dementia, with benefits in terms of knowledge about dementia and social and emotional support. The most effective interventions are those with multiple psychotherapeutic components, such as Cognitive Behavioural Therapy and relaxation exercises, educational resources, online peer support groups, and interaction with healthcare professionals.

However, for these interventions to be successful in a specific context, such as that of rural populations, a process of cultural adaptation, co-design and implementation is needed. For example, some of the concerns expressed by the focus groups in our qualitative study into the adaptive implementation of an online support programme for caregivers, iSupport-Spanish version, concerned the local availability of technological devices or internet access in rural areas. Some recommendations that resulted from the process of co-design and cultural adaptation were:

1. make the platforms accessible through a personal link instead of a username and password;
2. make the platforms available in public spaces for those without access to Wi-Fi or technological devices, e.g. community libraries, town halls, etc.;
3. use a multiplatform format (e.g., computer, smartphone, tablets);
4. make information available through audio and text (both modalities);
5. include images and videos accompanying the text;
6. offer the possibility to personalized letter size and background colours;
7. avoid technical words (use simple language);
8. offer feedback from healthcare professionals and support groups; and
9. offer the information in slide format.

Support interventions for caregivers, such as the iSupport-Sp (available at https://learning.bluece.eu/), could improve their quality of life and the quality of care, reduce caregiver burden, improve care service delivery, and could help to cope with care responsibilities.

Guidance

Social media have the potential to be an additional supportive medium for people with dementia. It is recommended to signpost individuals with dementia to social media platforms to leverage their potential.

Explanation and Examples:

We conducted an online survey with 143 people with dementia to explore how they used social media platforms and what kind of information they shared on their accounts. Our findings show that people with dementia use various different social media platforms like Facebook or Twitter to raise awareness, give and receive support, and to share their experiences of living with dementia. As subsequent older generations will use technology more and, consequently, will become more tech-savvy, social media platforms will become more relevant for this population. As post-diagnostic support is often lacking, social media platforms can be used as medium that is widely available and easily accessible to offer people with dementia additional (peer) support. Examples of these platforms include online forums like Talking Point by the Alzheimer’s Society UK, Facebook groups run by charities or dementia organisations, or Twitter where many people with dementia are active. Signposting people with dementia to these social media platforms is therefore recommended.

Guidance

There are many considerations when planning to implement technological interventions. The issues can be grouped into context, implementation and mechanism of impact factors. Evidence from the FindMyApps project has identified, within these categories, specific factors that are important for successful implementation of a tablet-based intervention, such as FindMyApps. Potential tablet-users and care providers are advised to base their decisions on this evidence.

Explanation/examples:

The FindMyApps project compared the FindMyApps intervention to usual tablet use by community-dwelling people with mild cognitive impairment (MCI) or mild dementia. The following factors were identified as influencing the success of implementation of both the FindMyApps intervention and a standard tablet:

• Context:
  • People with MCI/mild dementia who previously used a tablet are more likely to use the intervention. Intensive one-on-one support is recommended to those who have never used a tablet.
  • People with MCI and younger people with MCI/mild dementia may use the intervention more. Extra support is recommended for older people with dementia.
  • People experiencing apathy may benefit more from dementia-specific tablet programmes, such as FindMyApps, which provide easy access to selected apps, than from a standard tablet.
• Implementation:
  • People with slower Wi-Fi connections may find the tablet harder to use.
  • It is often feasible to provide support by telephone and/or video-call but face-to-face contact is more suitable for those who have never used a tablet before.
  • Few people use passive support, such as a telephone helpdesk. It is therefore recommended to pro-actively offer support to those who may need it (see above).
• Mechanisms of impact:
  • Tablet-use may support social contact and engagement in meaningful activities, more than instrumental activities of daily living. It is recommended to set personal goals accordingly.
  • Limitations of specific tablet-apps (e.g. pop-up advertising, requirements for user-accounts with passwords) should be considered.
  • The quality of tablet-use, seems more important for social health than the quantity (frequency of duration) of tablet use. Set personal goals and evaluate accordingly.

Guidance

To successfully implement psychosocial applications of technology in dementia care, it is recommended to carry out implementation processes adapted to the context of interest and to adapt training materials socio-culturally.

Explanation/examples:

A qualitative study was performed to trace facilitators and barriers to implementing an evidence-based Dutch psychosocial support programme for people with dementia and carers with greater social integration and better cost-benefit ratio, the Meeting Centres Support Programme (MCSP), in Spanish-speaking countries. Among the potential barriers identified, the most relevant were associated with the lack of adapted training materials to the sociocultural context and the difference between urban and rural populations, particularly the access to populations living in remote areas.

It is therefore recommended that an implementation process be carried out that takes into account the characteristics of the region concerned, in addition to developing actions to overcome specific barriers, such as the creation of technological tools to offer the support programme remotely to provide access to the rural population. For example, as a result of this study, the ‘Introductory Online Course for the Implementation of Meeting Centres for People with Dementia and their Caregivers’ was developed and adapted for Spanish-speaking countries in the Spanish language (available at https://e4you.org/es/moocs/implementacion-de-centros-de-encuentro-para-personas-con-demencia-y-sus-cuidadores). The course consists of eight modules setting out the theoretical background and practical implementation steps in the preparation, implementation and continuation phase.

Also, to offer an alternative to the face-to-face caregivers’ programme included in the MCSP, the iSupport-Sp, an evidence-based training and support programme for caregivers of people with dementia, was developed in an online e-learning format in the Spanish language (available at https://learning.bluece.eu/). This platform aims to offer a support service for caregivers living in remote rural areas in Spain.

Guidance

See recommendation no. 3.3.5.5