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 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

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

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

Introduce new application (app) technology to a person with dementia by focusing on aspects that are likely to encourage their interest, such as family photographs, video calls with friends and family, music, games, or art applications.

Explanation

This guidance is based on a review of the literature on the use of touchscreen technology by people with dementia and carers.

Guidance

To provide high-quality elderly and dementia care, Digital Health Technologies (DHTs) can potentially help achieve the full capacity of Comprehensive Geriatric Assessments (CGAs). In addition they can improve communication and data transfer on patients’ medical and treatment plan information between care settings and stakeholders as well as improve health decision-making. Finally, they can help to share the responsibility of the geriatric assessment between professionals, thereby avoiding overloading the workload of individual users and reducing their psychological stress.

Explanation and Examples:

Due to the higher rate of transitions between care settings in older populations, associated with the complexity of an ageing population and the shift from institutional care to home care, CGAs have become an important assessment tool as they encompass multiple domains and address the variety of complex problems in frail older people. They are considered as multidimensional assessments, using quantitative assessment scales, that support multidisciplinary care teams in clinical decision-making and personalized care planning to meet the needs of older people, their families and carers, focusing on functional status and quality of life.

However, to reach the full potential of CGAs, their implementation should be supported by electronic data systems, which provide relevant outputs and allow timely sharing of information within multidisciplinary teams of healthcare professionals and between different healthcare settings. The use of DHTs can potentially help them reach their full capacity and overcome the data transfer limitations between care settings and stakeholders. To improve the usability and implementation of these DHTs, the following features are recommended: a) accessibility of individual assessment by multiple healthcare professionals and the possibility of splitting sections according to professional expertise to share responsibility for assessments; b) the use of secure data storage, such as clouds; c) automatization of real-time calculation of scales and outcomes with a graphical representation of the person’s profile and health status; d) automatic alerts, notifications and continuous monitoring of item completion; and e) provision of personalized care plans according to the data collected.

Well-designed digital health technologies can contribute to the safety of the potential users (e.g. healthcare professionals and stakeholders) and reduce psychological stress, including burnout and low morale, by avoiding overloading the workload of healthcare professionals. For example, by sharing the responsibility for carrying out the assessments between different professionals.

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

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.