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

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

Guidance

When selecting technologies for use in public spaces, procurers should involve occupational therapists and designers with expertise in dementia, and people living with dementia.  Public space technologies should:

1. have the most cognitively enabling and inclusive design features (i.e. minimal steps and memory demands),
2. be sited in the most supportive physical location (i.e. secure vestibule, busy thoroughfare) and
3. identify and account for wider sociocultural preferences (i.e. continued face-to-face services).

Explanation and Examples

Life outside home in most countries increasingly demands the use of everyday technologies (ETs i.e. transport ticket and parking machines, ATMs, airline self-check in machines, fuel pumps). However, ETs can present challenges, particularly for people with dementia, and differences in design and location may mean some ETs are easier to use than others.

To investigate variation in the challenge of ETs; the Everyday Technology Use Questionnaire was administered with 315 people with and without dementia (73 in Sweden, 114 in the USA, 128 in England) in a cross-sectional, quantitative study. Modern statistical analysis found 5/16 public space ETs differed in challenge level between countries (specifically: ATM, airline self-check-in, bag drop, automatic ticket gates, fuel pump).

These differences result from variation in design features or siting of technologies. However, they may also be due to differing habits between users in different countries (i.e. necessity and frequency of use, preference for particular modes of transport, concerns about security, embarrassment) or varying progress towards technologised rather than face-to-face services (i.e. towards cashlessness).

Taking account of inter-country differences could lead to selecting the most useable technologies and services. This could improve inclusiveness of public space internationally for older adults with and without dementia.

Guidance

When developing new digital applications, ensure you generate an optimal user experience and focus on sophisticated design including clear signposting and, an easy and intuitive navigation.

Explanation and example

People using the iCST app valued the sophisticated, mature design and the clear navigation but noted the need for clearer buttons. The design should have a highly professional look and feel and be clearly orientated to adults not children.

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.

Guidance

Nursing homes providing care for people with dementia should consider introducing portable devices in addition to desktop devices for electronic patient records (EPR). Devices should not disrupt or invade residents’ privacy.

Explanation and Examples

Portable devices have been shown to increase efficiency in some instances as they allow staff to record data into the EPR at the point of care instead of at the end of the shift. This enables staff to spend more time providing care to residents, particularly for residents with dementia and complex needs. Portable devices can support person-centred care by allowing immediate access to care plans with vital information about residents, such as dementia diagnosis. Rapid access to care plans is important for staff retrieving information about individuals who are at the nursing home temporarily on respite; for those residents who may be unable to recall personal information; and for those staff who work infrequently in the home and are unfamiliar with residents. However, it should be taken into consideration that some staff may prefer desktop devices based on ease of use when completing substantial documents. During the development of portable devices for nursing homes, the impact that such devices could have on residents should be taken into account and staff should explain the purpose of EPR devices to residents and family members who may be unfamiliar with the technology.

Guidance

Applications that should be incorporated into EPR systems used in nursing homes providing care for people with dementia include a spell-check, a copy and paste function and a keyword search function. Log-in processes should be rapid and secure.

Explanation and Examples

The presence of a spell-check has been described as saving time on proofreading, as well as increasing legibility and comprehension of documentation. This allows for more time to be spent with residents with dementia in direct care, and for correct care to be provided. A copy and paste function also saves time by allowing staff to easily transfer information across sections of the EPR where information is often required to be replicated. A keyword function allows staff to enter a keyword and jump to the relevant section in a resident’s notes, allowing for more efficient retrieval of information, important in situations when a resident is unable to recall personal information. Rapid log-in processes should reduce barriers to using the EPR, as slow log-in processes have been found to prevent staff from accessing information about residents before delivering care, and have meant staff have been forced to pass on information about residents verbally instead of entering it into the EPR. This may mean important information regarding any sudden changes in an individual’s condition might be missed.

Guidance

Developers of EPR systems for dementia care should consider including a function allowing for the automated generation of graphs to show trends in data, and an accompanying function to prompt staff about changes in a resident’s condition.   In addition, functions allowing for the automated generation of care plans from assessment data, and alerts to prompt staff to create or update a new document in the EPR may be of value to nursing homes. Interoperability should be a goal for the future.

Explanation and Examples

Automatic generation of graphs displaying trends in a resident’s condition increases visibility of changes, allowing staff to more rapidly identify and respond to changing care needs. For example, graphs showing changes in weight, which can commonly affect individuals with dementia. Furthermore, through the incorporation of artificial intelligence (AI), some EPR systems are able to analyse resident data and provide alerts to staff about potential risk factors. For instance, alerts to warn staff about potential skin breakdown, important for those residents with dementia receiving end-of-life care, who may be spending considerable amounts of time in bed and have reduced fluid intake. Automatic generation of care plans from assessment data could save staff time in administration, as well as automatic alerts incorporated into the EPR that prompt staff to update care plans, meaning optimal care can be planned and provided to individuals with dementia. Finally, EPR systems should be interoperable, so that staff can access and communicate relevant information securely over the internet with external healthcare providers, instead of using paper records.

Guidance

EPR systems should include the necessary assessment templates for use in the care of people with dementia, as well as space for entry of free text and to upload photos of residents. Electronic assessment forms and care plans for dementia care should use formalised nursing language to prompt the entry of correct information, and structured templates that guide staff through body systems, leading to comprehensive care plans.

Explanation and Examples

EPR systems in nursing homes have been found to omit the appropriate scales and assessments required by nursing staff caring for people with dementia. For instance, staff stated that they require the MMSE assessment, the QUALID scale, and the Barthel Index of Activities of Daily Living incorporated into the EPR. Furthermore, staff have identified incorrect nursing language in electronic forms, meaning important information is not recorded. For example, the omission of the term ‘dementia diagnosis’ from assessment forms meant that nurses were not entering this information about residents. By including the appropriate structured forms for data entry with formalised nursing language, Artificial Intelligence (AI) tools can be more successfully integrated into the EPR. Space for photos of residents is important for new staff when learning residents names and for confirming identities of residents when required, and structured body templates included into the EPR have been identified as a useful visual prompt for completing assessments. Staff also require space to enter life stories, and space for free data entry for additional notes and observations. For example, changes in the behaviour of a resident with dementia.

Guidance

Electronic assessment forms and care plans used for planning dementia care in nursing homes should prompt staff to consider the following needs of residents: activities, maintaining previous roles, reminiscence, freedom and choice, appropriate environment, meaningful relationships, support with grief and loss, and end-of-life care.

Explanation and Examples

The themes above have been described by people with dementia in various studies exploring their self-reported needs and experiences in nursing homes. Developers should therefore consider including these themes into electronic assessment and care plan templates as prompts for nursing home staff to explore with residents.

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

Researchers and developers of digital psychosocial interventions for people with dementia and family carers should consult end users on the mode of delivery of their interventions to ensure its usability.

Explanation and Examples

Consensus exists that consultations with people with dementia and family carers should be carried out when developing digital complex interventions for these populations. However, with different platforms that are available to researchers and developers, it is especially important to ensure that the mode of delivery of these technologies (e.g., smartphone application, website, text messages etc.) is appropriate and useful for people who are going to use the intervention. Qualitative consultations in the form of interviews and focus groups with end users can be especially useful for this. We conducted focus groups with 17 people with dementia and family carers to establish their needs and wishes regarding the digital adaptation of an existing face-to-face intervention. Contrary to our expectations, we discovered that participants preferred a website intervention if they were going to use the intervention for a limited amount of time, for example less than four weeks. Smartphone applications were preferred if they were going to be used for a longer period. Consultations with end users are recommended to establish not just the intervention content but also its mode of delivery.

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

End-users should be involved in the development of web-based advance care planning support tools to ensure their usability and usefulness for end-users. Furthermore, the content of web-based advance care planning tools should be substantiated by scientific evidence.

Explanation and Examples:

More and more web-based advance care planning support tools are publicly available on the internet. We conducted a systematic review of web-based interactive advance care planning support tools. We found numerous interactive web-based advance care planning support tools, varying in terms of their characteristics, functionalities, readability, quality of content, and level of evidence. Most tools were not co-developed with end users; were of low or medium quality; and, with a few exceptions, had not been evaluated in research. Tools should be evaluated through usability and effectiveness testing and should be substantiated with the most recent scientific literature.

Guidance

Policy-makers and developers of apps and websites, particularly those for people with cognitive impairment or dementia, should review and improve the cognitive accessibility of privacy policies associated with apps and websites. Privacy information should be available in the official language of each country in which the app or website is available. Navigation to information should be promoted by simple, attention-focusing user interface design. Length and linguistic complexity of information in the privacy policy should be limited, or the information should be summarized.

Explanation and Examples

Cognitive accessibility conceptualizes the extent to which digital services are simple, consistent, clear, multimodal, error-tolerant, and attention-focusing to use, taking into account all users.

Online data privacy is an important legal and ethical issue, and an important concern of many (potential) app-users, which may impact on their adoption of digital tools and services. The European General Data Protection Regulation (GDPR) protects people’s right to access information about how their data is processed, so that they can make informed choices, but there are concerns that many privacy policies are too long, too complex and sometimes not even available. This may reduce trust in digital tools, presenting a barrier to adoption.

A cross-sectional study found that, in the Netherlands, Sweden and the UK:

• Most health and wellness apps sampled outside the UK did not have a privacy policy available in the official language of the user’s country
• Almost no privacy policies met reading level benchmarks, meaning the language was too complex for the average native speaker to understand.
• The time that it would take the average adult native speaker to read each privacy policy was 10 minutes (websites) to 12 minutes (apps).

Recommendations to improve the cognitive accessibility of online privacy information have been made. An example of a privacy policy designed largely in line with these recommendations is the privacy policy of the FindMyApps project, which can be found on the project website: https://findmyapps.onderzoek.io/cognitively-accessible-privacy-information

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).

Guidance

The design of some existing pet robots for people with dementia do not sufficiently consider their preferences. For example, while some pet robots are designed to resemble unfamiliar animals such as a dinosaur or seal, people with dementia seem to prefer more familiarly designed pets, such as domestic animals like cats and dogs. As little research has been done into pet robot design preferences of people with dementia further investigation is needed.

Explanation and Examples

One of the most researched and used pet robots in dementia care is PARO, a robotic baby harp seal. The developer of PARO anticipated that users are likely to be more accepting of PARO, since they are less likely to have experiences and expectations of a seal. However, Bradwell and colleagues found that older adults including people with dementia have expressed a preference for familiar animals such as cats and dogs. A qualitative study uncovered similar findings – Care providers in nursing homes expressed that residents with dementia may prefer and react better to familiar animals. In line with a person-centred approach to care, the use of pet robots should account for the preferences and needs of people with dementia. However, there is a lack of studies that have explicitly investigated such design preferences. More studies are necessary to bridge this gap.

Guidance

People designing psychosocial interventions for people with dementia should be aware that viewing generic, rather than personal photographs, can also be a meaningful activity for the person with dementia. Moreover, viewing these photos digitally was found to be either similar to or better than viewing conventional printed photos.

Explanation and Examples

There is evidence that using generic photos, versus personal family photos, in psychosocial interventions for people living with dementia can be more effective in promoting social interaction and eliciting stories with emotional and personal significance. Generic photos may feel less threatening compared to using personal photos in conversation with the person with dementia, the conversation that arises becomes more flexible and less demanding of remembering specific people or events. This can lead to better social interaction, mood, and eventually, better quality of life for the person with dementia.

Generic photographs can be more accessible and easier to acquire, lessening the time needed to, for example, ask for and collect family photographs from relatives (if these are still available). It has the potential to be cost-effective as well (compared to other art-based activities like museum visits), and has the potential to transcend societal or cultural differences.

These benefits may be even more pronounced, when generic photos are used in a digitalized format, as previous research showed that viewing digitalized photos is similar to or better (due to the pleasurable experience of using virtual reality technology; Tominari et al., 2021; Xu & Wang et al., 2020) than viewing conventional printed photos.

Guidance

To successfully integrate social robotic platforms in community-based dementia care, such as Meeting Centres for people with dementia and carers and daycare centres, their features and applications need to be tailored to the needs and preferences of the end-users, the dynamics of group interactions, and the Meeting Centres’ activity policies and settings.

Explanation and Examples:

Research through focus groups and interviews with stakeholders on potential facilitators and barriers in the implementation of the social robot MINI indicated that for a successful implementation of social robots in Meeting Centres and daycare centres for people with dementia, it is expected to be crucial for social robot designers and developers to consider the following recommendations to guide the design of the robotic platform:

• Evaluate the needs and preferences of the participants of Meeting Centre. Qualitative research with end-users and care professionals is essential before and during the robot development phase. This will ensure the acceptance and usefulness of the robot in such contexts.
• Given the preference for group activities in Meeting Centres over individual activities, it is crucial to integrate the robot into a group setting so that it can interact with multiple users. For example, a multi-player game could allow two or more individuals to interact with a social robot at the same time.
• Avoid designing games and quiz-like activities for use on social robots to avoid, in line with the activity policy of Meeting Centres, confronting persons with dementia with their shortcomings in activities that have high cognitive and memory function demands. Instead, fun, enjoyable, and relaxing applications and games would be most appealing and beneficial.

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

When evaluating the impact of technology on the self-management of people with dementia, it is recommended to also evaluate how people succeed in coping psychologically and emotionally with the consequences of dementia in their daily life.

Explanation and examples

Measures to assess self-management in people with mild dementia evaluate how people compensate for their functional disabilities in daily life, but do not rate how people cope psychologically and emotionally with the consequences of dementia in their daily life (e.g. maintaining positive thinking and relationships), which is also a component of self-management. It is recommended to use additional instruments such as the Jalowiec Coping scale (1984) or the Qualidem (Ettema et al, 2007) for these aspects when assessing the impact of technology on self-management.

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.

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.

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

More high quality, ecologically valid, controlled studies must be planned, funded and executed in order to properly evaluate the effectiveness of technologies designed to be used by people with dementia and to improve social participation and self-management.

Explanation and examples

A systematic review found that in the whole world only nine controlled evaluation studies with technologies designed for people with dementia have been carried out in ecologically valid settings, to assess effectiveness in improving social participation and self-management. Controlled studies are the most effective way of conducting unbiased evaluations, from which causal inference can be drawn. Policy-makers should be demanding this level of evidence as a condition of investment in such technologies. So far, studies have been conducted with VR-based technologies, other wearable technologies, and software applications. However, only a single study was found to be of good quality. Other technologies for people with dementia have not yet been the subject of a single ecologically-valid, controlled study with these outcomes (this includes, for example, social robots). In order to conduct high quality studies, researchers must ensure that studies are adequately statistically powered based on a sufficiently large sample; include active technology-based control interventions, so that is controlled for attention; and conduct and report intention-to-treat analyses, taking into account data of all participant to the study, including dropouts, and not only those who completed the intervention. Funding bodies must recognize the need to fund such studies accordingly. Clinicians, healthcare providers, policymakers and users of technology should expect and demand that such high-quality evidence is available to support decision-making.

Guidance

Ensure that the methodology for the evaluation of social robots for older adults with and without dementia is appropriate for the purpose of the study, to strengthen the results of the study.

Explanation and examples

Social robots are seen promising for supporting daily functioning and promoting overall social health of cognitively impaired older people, particularly those with dementia. Our scoping review into methodologies used to study the feasibility, usability, efficacy, and effectiveness of social robots for elderly adults with and without dementia showed that, despite promising results, the quality of studies remains low due to various methodological limitations. We have therefore formulated recommendations focusing on different types of studies that can help future researchers develop appropriate study designs to evaluate social robots, allowing for more reliable information on study outcomes:

• For feasibility and usability studies an experimental design with mixed-methods of data collection (qualitative and quantitative) are recommended. Multiple interaction sessions with the social robot are recommended as they may reveal changes in feasibility and usability, when the novelty effect gradually fades and people get used to the robot.
• Appropriate designs for efficacy and effectiveness studies are RCTs, or quasi-experimental designs when randomization is not feasible. Sample sizes should be sufficiently large, and individual interaction sessions with the social robot running for more than one month would serve best for such studies to obtain relatively robust and reliable results. Efficacy and effectiveness should only be studied in fully functioning social robots.
• It is strongly recommended not to combine different aims in one study. The preferred designs to study the feasibility and usability of a social robot, differ significantly from the designs needed to study efficacy or effectiveness.

Guidance

See recommendation no. 3.2.5.1

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.

Guidance

Low-cost pet robots are a promising technology to improve the psychosocial health of people living with dementia. More high quality studies with sufficiently large sample sizes should be conducted to properly investigate their impacts.

Explanation and examples

Pet robots are a technology-based substitute to animal assisted therapy. However, the high costs of many pet robots can hinder the use of pet robots in dementia care. A scoping review was conducted to understand the impact of using lower-cost (more affordable) pet robots. Synthesised findings from nine studies suggested that low-cost pet robots improved the communication, social interactions and other health domains of older adults and people living with dementia. However, most studies had a small sample size and were of varying quality. Moving forward, more rigorous studies are necessary to investigate their impacts.

Guidance

Low-cost pet robots demonstrate the potential to positively impact the psychosocial health of people with dementia and their caregivers. Due to their lower cost, they may be more accessible and affordable and should therefore be considered for use in dementia care.

Explanation and examples

Although pet robots have demonstrated positive impacts on the wellbeing of people with dementia, their affordability can impede their uptake in dementia care. A scoping review, content analysis of consumer reviews and a qualitative study showed that the impacts of low-cost pet robots on people with dementia resembled the effects of other higher costed (but more advanced) pet robots. These included improved mood, companionship, increased activity engagement and reduced anxiety. Caregivers also experienced knock-on effects, such as feelings of joy and relief. Low-cost pet robots are more widely accessible to the public since they can be purchased off-the-shelf. While promising, findings of their positive impacts are subject to bias. More rigorous studies are necessary to confirm their impacts.

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.

Guidance

Exergaming in day care centres can be implemented more successfully by making more than one employee responsible for it.

Explanation and examples

We have asked day-care centres for people living with dementia, which factors were important for successful implementation of Exergaming. Sometimes, only one person in the day-care centre was responsible for the Exergaming activity. If this person was not at the day-care centre, because he/she was ill or left for another job, the Exergaming activity often was forgotten.

Guidance

Employees of care organisations should be supported by the management in their responsibility for Exergaming as a new activity. Managers should be actively engaged in Exergaming and be kept updated on any developments with regard to Exergaming (i.e. positive experiences of people with dementia practising Exergaming, any potential issues with the activity).

Explanation and examples

We have asked day-care centres for people living with dementia, which factors played a role in successful implementation of Exergaming. The staff of these day-care centres sometimes did not feel supported by the management in supervising and implementing the Exergaming activity. This made it less likely for them to implement it.

Guidance

To develop an eHealth intervention for caregivers of people with dementia that will be used in practice, developers should investigate the needs of the target population (people with dementia and their caregivers), and the needs of the people who will be implementing these interventions after a trial phase (such as case managers, hospital workers, volunteers or professionals associated with advocacy groups).

Explanation and examples

A systematic search was conducted into the implementation of studies including the terms ‘dementia’, ‘eHealth’, and ‘caregivers’. 2524 abstracts and 122 full texts were read, resulting in 46 studies meeting all criteria. Containing 204 statements on implementation. Most implementation statements could be grouped into 2 main themes: ‘Determinants associated with the eHealth intervention’ and ‘Determinants associated with the caregiver’. Very few statements were in the themes ‘Determinants associated with the implementing organization’ and ‘Determinants associated with the wider context’. Absence of knowledge on the contextual environment creates significant difficulties for health system planners and implementers who aim to translate these interventions into practice.

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.

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.

Guidance

To deliver more efficient self-help and technology-based psychological interventions to informal caregivers, time flexibility and personal retention approaches should be considered to prevent a high rate of dropout. Flexible timing (i.e., self-paced instruction) and personal retention approaches, such as embedding a component of social support/interaction in the form of informational support (e.g., guidance) and/or emotional support (e.g., peer support), showed lower attrition and higher rates of engagement and satisfaction in various self-help and technology-based psychological interventions for informal caregivers.

Explanation and Examples:

A systematic search was conducted into the use of psychological interventions based on acceptance and commitment therapy for informal caregivers of people with dementia or other long-term or chronic conditions. A total of 7896 abstracts and 33 full texts were read, resulting in 21 studies involving a narrative synthesis. Quantitative and qualitative data showed that flexible interventions are more amenable to caregivers’ lives. Further, social or interpersonal support in various modalities (e.g., automated messaging, reminders, personal touch) might promote motivation for, uptake of and engagement in interventions. Therefore, future technology-based interventions, particularly in the form of self-help that requires little or no therapist resources, might benefit from time flexibility and embedded social support components (e.g., peer support or motivational coaching). Furthermore, employing mixed methods or embedded qualitative components. (e.g., semi-structured interviews) might provide further insight into user experience, potentially supporting decisions related to intervention design. Uncovering and preventing factors associated with high rates of dropouts will lead to more effective, adaptive and individualised interventions.

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

Issues such as access to the EPR system, appropriate training and system development and support should all be considered by nursing homes before and during the implementation of EPR systems.

Explanation and Examples

Access or non-access to various parts of the EPR system should be discussed and put in place. For instance, management should consider whether auxiliary staff should be allowed to access medical information, such as dementia diagnosis, and whether this would consequently entail training in the field of dementia. Appropriate training in the EPR system according to individual staff needs is also required, as some staff may be more experienced in the use of technology than others. Training ‘on the job’ was found to be preferred by many over classroom-based teaching. Finally, software developers should consider working alongside nursing homes during the design of EPR systems in order to ensure software is appropriate for their needs. Developers should continue to be involved in improving the EPR following implementation, as part of an iterative cycle.

Guidance

To improve the implementation of complex health technologies focused on training healthcare professionals in institutional settings, it is important to ensure the involvement of a dedicated trainer throughout the entire implementation process.

Explanation and Examples

For complex health technologies focused on training healthcare professionals, trainers play a crucial role. Trainers should be able to spend dedicated time to deliver the trainings in a specific facility or institution (e.g. nursing home). Hence, they should preferably be paid by a third party or, if paid by the institution, mechanisms should be in place to ensure trainers have dedicated time and training can be delivered.

Ensuring the continuous and long-term involvement of such trainers (e.g. via regional collaborations) could facilitate better implementation of complex health technologies, as timing of the trainings can then be tailored to the needs in a specific context and to the learning needs of the professionals in this context.

Guidance

To improve the implementation of complex health technologies in institutional settings, it is important to ensure a clear distinction of roles and responsibilities for staff throughout the entire implementation process.

Explanation and Examples

To facilitate the implementation of complex health technologies in a, often complex, health care setting, a clear distinction of roles and responsibilities for staff is crucial. This clear distinction helps:

1. the staff to know what is expected of them,
2. co-workers to know what they can ask and expect of the staff involved in the implementation and
3. management to determine how much time would be needed for the staff to implement the technology in an appropriate manner.

Guidance

Researchers and developers of web-based psychosocial interventions for people with dementia and carers should consider working together with existing dementia charities and support organisations during the intervention development. During the implementation and dissemination phase, these charities and organisations can be supportive in informing the public about the intervention, thereby increasing its potential use.

Explanation and Examples:

Existing research has shown the need for easily accessible psychosocial interventions for people with dementia and carers. Many people affected by dementia reach out to existing and well-established dementia support organisations and charities, such as Alzheimer’s Society UK in the UK, after they received the diagnosis. We conducted focus groups with 17 people with dementia and family carers to inform the development of a web-based psychosocial intervention. In these consultations, several participants pointed out that the intervention needs to be easy to find. Therefore, they suggested integrating it into the online content of dementia support organisations since these organisations are often the first source of support for people with dementia and carers. For example, the dementia support organisation (e.g., Alzheimer’s Society UK) could have a link on its website for people with dementia and carers that leads them to the intervention. Working together with these dementia support organisations during the intervention development phase can enhance the intervention’s implementation, dissemination, and future use. It will also enable easy access to the intervention and enhance its credibility and trustworthiness.

Guidance

Researchers and technology developers should be aware of the mutual influence care recipients and caregivers have on each other, and the importance of maintaining and improving caregiving relationships. Therefore they should adopt a dyadic approach to the development, implementation and evaluation of technology-driven interventions by involving both members of the dyad.

Explanation and examples

A mixed-methods feasibility study investigated the impact of a tablet-based activation system on nine community-dwelling caregiving dyads living with dementia, their motivations to use social technology together, and facilitating and impeding factors in the independent use of social technology at home. In light of the SARS-CoV-2 pandemic, it was clear that the extent to which the caregiving dyads were influenced by the extreme social isolation depended on how socially active they were before the pandemic, and their familiarity with social technology. The dyads’ motivations for welcoming technology in their social interactions ranged from trying something new together, keeping up with society to communication support.

Identified facilitators and barriers revealed that user capabilities (care recipients’ cognitive capacities and caregivers’ energy to support their loved ones); user willingness (technology interest) and sufficient support (proactive, continuous and in-person) are three crucial elements in using social technology independently at home.

These contextual factors should be approached from a dyadic perspective taking into account the needs and preferences of both members of the dyad. Technology promoting social participation cannot be developed for people living with dementia without taking into account the needs of their caregivers, and vice versa.

Guidance

While designing social assistive robots the following recommended features should be considered to promote successful implementation: low-cost affordable design (pet robot is preferred to humanoid), language mutation for target user and integration with Smart Home IoT (including IoT security mechanisms). During the development phase co-creation should be promoted.

Explanation and Examples:

These recommendations are based on the main findings of a scoping review. The scoping review investigated the state-of-the-art in social assistive robotics, i.e. the current technological advances towards a single framework for effective, safe and secure implementation of social robots for people with dementia. The scoping review qualitatively examined the literature on the use of companion robots, including both pet-like and humanoid robots, and Internet-of-Things (IoT) security, coupled with the new 5G technology for home-based elder care. A comprehensive search strategy was developed and selected databases were looked through with relevant keywords. From the 355 full-text articles found, 90 articles were selected to be examined. In order to ascertain the operation of social assistive robots in the future, remaining challenges, unused opportunities, security risks and suggested remedies are discussed, and a dementia-centred concept and implementation framework proposed.

The following set of recommendations were formulated based on the main findings:

• Consider using a pet robot instead of a humanoid assistive robot as the high cost of the latter for a similar impact and user acceptance cannot be justified.
• Consider low-cost, affordable design and various language mutations for wider deployment in practice, thus allowing more comparative studies, which could provide convincing arguments for using the robot.
• Integrate robot with Smart Home IoT to enhance its functionality towards managing ones own life and promote independence.
• Consider data security, and especially IoT security, prevention mechanisms while integrating the social robot with IoT smart home sensorics.
• Promote wider user involvement and higher level of participation (co-creation) in the development phase of the robot.
• Introduce clearly, and particularly identify, the concerns and needs of people with dementia in the design process.
• List the potential risks and misuses of IoT vulnerabilities, including their remedies, in the design process.

Guidance

See recommendation no. 3.3.4.4

Guidance

Technology developers and researchers should be aware of the different contextual factors that can affect the translation of research on social robots to real-world use.

Explanation and examples

Barriers and facilitators affecting the implementation of social robots can occur at different levels. For example, they relate to the social robots’ features, or relate to organisational factors or external policies. A scoping review was conducted to understand the barriers and facilitators to the implementation of social robots for older adults and people living with dementia. 53 studies were included in this review. Most existing studies have disproportionately focused on understanding barriers and facilitators relating to the social robots, such as their ease of use. However, there is significantly less research that has been conducted to understand organisational factors or wider contextual factors that can affect their implementation in real-world practice. Future research should pay more attention to investigating the contextual factors, using an implementation framework, to identify barriers and facilitators on different levels to guide the further implementation of social robots.

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.

Guidance

To minimise potential distress and negative impacts from using pet robots, researchers and care providers should assess their suitability for individuals with dementia, and facilitate their use based on each individual’s preference, needs and abilities. As the needs of people with dementia can fluctuate, care providers should also monitor and re-evaluate the use of pet robots.

Explanation and examples

Findings from a scoping review of eight studies showed that some people with dementia did not respond to pet robots. Some had negative responses such as agitation, or became jealous when the robot was shared with other residents in care facilities. An analysis of 1,327 consumer reviews on a low-cost robotic cat showed similar findings. Likewise, interviews with care providers from nursing homes revealed that they had similar experiences. To minimise the risks of potential negative impacts, the use of pet robots for each individual has to be carefully considered. This should encompass:

• Assessment

  Assess the individual’s preferences, needs, functional abilities and needs (e.g. occupational needs, and physical, cognitive, and sensory abilities). If used in a care setting, consider discussing the use of pet robots with family members.

• Facilitation and Tailoring

  Based on the assessment, provide facilitation or tailored support to individuals. For example, if the individual has difficulties initiating interactions with the pet robot, consider providing assistance

• Monitoring & Evaluating

  Monitor and evaluate the individual’s reaction to pet robots, and intervene if the individual shows signs of distress. These observations should be shared with and discussed with other care providers if used in care facilities

Guidance

See recommendation no. 3.3.4.4

Guidance

See recommendation no. 3.1.6.7