Best Practice Guidance
Human Interaction with Technology in Dementia

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

Consider involving occupational therapists in providing interventions that enable people with dementia to use the everyday information and communication technologies they have.

Explanation and Examples

A standardized questionnaire mapped how many Everyday Information & Communication Technologies (EICT) (maximum 31) were relevant to 35 people living with dementia and 34 people with no known cognitive impairment in Sweden. A relevant EICT is one that is being used, or has been used in the past, or is planned for use in future. The median amount of relevant EICTs was shown to be 11 in the group without dementia, and 7 (significantly less) in the group with dementia. Each person also rated their ability to use (maximum 90) relevant Everyday Technologies (ETs) on a 5 step rating scale. This data was analysed (in a Rasch model) to produce a score for each person’s ability to use ET. When we compared ability to use ET with amount of relevant ETs in each group, the more EICTs a person counts as relevant, the higher was their ability to use ET. This pattern was only found in the group of people with dementia, and not the group without. The amount of relevant EICTs is affected by a person’s ability to use them. So some people may need support to identify the usefulness and possibility to use an EICT function that they have access to.

Guidance

To avoid excluding some people with dementia, service developers should provide alternative non-ICT options when they deliver services and interventions that rely on smartphones, tablets and computers.

Explanation and Examples

A standardized questionnaire mapped how many Everyday Information & Communication Technologies (EICTs) (maximum 31) were relevant to 35 people living with dementia and 34 people with no known cognitive impairment in Sweden. In the same questionnaire, each person also rated their perceived their ability to use (maximum 90) relevant ETs on a 5 step rating scale. A relevant EICT is one that is being used, or has been used in the past, or is planned for use in future. This data was analysed (in a Rasch model) to produce a score for each person’s ability to use ET, and a challenge measure for each of the 31 EICTs to show how difficult or easy they were to use compared to each other. EICTs on smartphones and tablets were not relevant for a high proportion of both groups. Combined with a lower ability to use ET, particularly for people in the group with dementia, and high challenge measures for computer and automated telephone service functions, this could mean some people cannot access EICT-based services and interventions on computerized devices. However, the landline telephone was easiest to use and relevant to the majority of both groups, so this, together with face-to-face options could provide viable alternatives.

The study is currently under review and will be available under open access.

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

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

Internet should be freely available in care homes so residents with and without dementia can have access to online resources (e.g.social media, entertainment, information).

Evidence

The multi-country survey indicates that it is not common for the residents to have access to the internet in care homes, with the internet use restricted to the staff. This means that many social and leisure activities based on ICT will be inaccessible for people with dementia, depriving them of enjoyable, meaningful activities and social networks.

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

People involved in the provision of support to family carers, such as health professionals, patient organizations, should inform them about the potential benefits derived from the use of online interventions and actively promote their use.

Explanation and example

Despite the potential benefits of Internet carer support and training programmes, family carers are not always informed about the existence and use of online alternatives to traditional face-to-face support programmes. Extra attention should be paid to inform and motivate family carers to start and continue using Internet training programmes, especially in countries where the use of the Internet for health related purposes is not common yet. India trial (Mehta et al. 2018) Rrecruitment and adherence for a randomized controlled trial of an online support programme in India (Mehta et al. 2018) turned out to be challenging as most of the family carers were not accustomed to access to the Internet for health-related reasons.

Guidance

To make complex health technologies more useful and applicable for users, it is crucial to involve all users, including staff, in the early phase of development of these interventions.

Explanation

In developing complex health technologies that would be delivered by nursing staff to people with dementia, it is important to involve the nursing staff themselves in the early phase of development of such technologies. In doing so, complex health technologies can be more useful and applicable for the nursing staff.

Guidance

To better implement complex health technologies in complex settings such as nursing homes, it is important to make these health technologies flexible to existing situations and processes including: the specific context of the nursing homes; the needs and roles of nursing staff; and the timing and order of implementation of different intervention components (e.g. training on specific subjects).

Explanation

Nursing homes may have their own culture and own ways of working. Hence, complex health technologies should be able to fit in this context. The nursing staff may also have varying levels of knowledge and skills and complex health technologies should be flexible for tailoring so that it can be used based on the capabilities of all nursing staff. The timing and order of implementing components of the complex health technologies may not be applicable in all situations, so interventions should be flexible for nursing staff to decide when to implement certain complex health technology components.

Guidance

Consider active engagement of nursing home management as a crucial component when designing complex health care technologies for nursing homes. Their commitment to the project’s success will help to ensure staff have sufficient time and other resources to participate in the new programme.

Explanation

A lack of time is one of the most important barriers for implementing advance care planning (ACP) in nursing homes. Therefore, it is crucial staff gets enough time to engage and work with the intervention in order to properly implement it. When staff is given time to spend on intervention-related tasks, instead of having to spend this time on other tasks, this will increase their ownership of the intervention.

Example

In the ACP⁺ programme all nursing home managers signed a contract stating they would allow their staff to spend time on the intervention. Training sessions were held during working hours and staff got paid while attending these sessions.

Guidance

When implementing Advance care planning (ACP) as a complex health technology in a complex setting such as a nursing home, multiple levels should be targeted, including management, nurses, care staff, volunteers, visiting or residing physicians, families, cleaning or other staff.

Explanation

The implementation process will have a higher chance of succeeding when multiple levels are targeted within the nursing home. Colleagues in the nursing home can help each other to implement the intervention, creating a positive and open environment to learn and develop new skills and deliver the best care possible. In this way the intervention can produce a shift in working culture and attitudes and deliver sustainable change.

Example

The ACP⁺ intervention targeted not only the (head) nurses, but also other care staff and cleaning, kitchen and maintenance staff. Also, engagement of the management was required for participation in the trial. A few highly motivated people were extensively trained in conducting ACP conversations and this knowledge was past onwards to colleagues via internal training sessions. In this way the whole nursing home was involved in the intervention, leading to greater participation of all nursing home employees.

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

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

Occupational therapists must adopt telehealth practices as a supplement to in-person occupational therapy to avoid service disruption in times of crisis. This requires legislation and public promotion, clear strategies and guidelines for health service managers, and finally, training and continuous support for end-users.

Explanation and Examples

A global online needs-assessment survey among occupational therapists was undertaken to determine the impact of the COVID-19 pandemic on telehealth practices in occupational therapy worldwide and to get insight into facilitators and barriers in utilising this form of service delivery. The survey was circulated in the occupational therapy community by the World Federation of Occupational Therapists (WFOT) between April and July 2020, collecting responses to closed-ended questions, in addition to free-text comments. 2750 individual responses from 100 countries were received. The results revealed a significant increase in the use of telehealth strategies during COVID-19, with many reported benefits. Occupational therapists who used telehealth were more likely to score higher feelings of safety and positive work morale and perceived their employer’s expectations to be reasonable. Restricted access to technology, limitations of remote practice, funding issues and slow pace of change were identified as barriers for some respondents to utilising telehealth. Facilitators included availability of supportive policy, guidelines and strategies, in addition to education and training.

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

Health and social care professionals working with people with Young Onset Dementia should clearly signpost to online peer support services, to help people find the support they need.

Explanation and Examples

Peer support can be highly beneficial for people with Young Onset Dementia and make the post-diagnostic period more positive. It can contribute to different aspects of social health: their ability to fulfill one’s potential and obligations, management of their own life and participation in social activities. People can share experiences, information, and coping skills in these areas. This goes beyond support that health and social care professionals, or friends and family can give. Given these benefits, peer support should be accessible to every person living with Young Onset Dementia. However, access to specialised (support) services varies widely across the UK. Therefore, online peer support could offer a solution.

Our research showed that people with Young Onset Dementia experienced a severe lack of support and signposting to (peer) support services. Benefits of having peer support online included not having to travel, not having the sensory overload of being in a room full of people, and finding it comfortable to join from their own home. Having their support group gave many of them hope again, and some called it their lifeline. Our online survey showed that the main reason why people did not use online peer support was that they did not know it existed, or they did not know where to look for support. Some of those who did not have experience with online peer support would be interested if they knew where to find it. This indicates a need for professionals to clearly signpost to (online) peer support services and information.

Guidance

Online peer support groups on text-based platforms, such as Facebook groups or discussion forums, can have a much larger membership than in-person groups or groups using videoconferencing platforms. Moderators should provide a clear description of the purpose of the group and who it is for, and what the ground rules are.

Explanation and Examples

Findings from an extensive systematic literature research on online peer support for people with different chronic, neurodegenerative conditions, identified several elements of best practice. Online health communities, for example on social media or discussion forums can have a large membership and tend to be more anonymous in nature. To prevent access by people for whom the group is not really intended, the group should be closed. This means that the moderators need to approve before new members can join. This goes hand in hand with the purpose of the group and who it is for. For example, if the group is only for people living with a Young Onset Dementia diagnosis, moderators may want to avoid that family members, healthcare professionals, or researchers access the group. This is to allow the members to speak freely and to respect their privacy. It is also important to clearly indicate, preferably on the home page, who the group is for. Is it only for people with a diagnosis, only for carers, or for both? Finally, it is the responsibility of the moderator to intervene when someone shares harmful, misleading, or disrespectful content in the group. The moderator should delete such messages and, if possible, contact the author. In this way the moderator ensures the group remains a safe space for everyone.

The findings of the systematic literature review were echoed by people with Young Onset Dementia who took part in individual interviews and had experiences with peer support on text-based platforms.

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

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

See recommendation no. 3.3.4.1

Guidance

See recommendation no. 3.3.4.2

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

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

See recommendation no. 3.3.4.4

Guidance

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

Explanation and examples

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

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

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

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

See recommendation no. 3.3.4.1

Guidance

See recommendation no. 3.3.4.2

Guidance

Technological solutions that can safeguard the social health of nursing home residents with dementia should be implemented as an integrated part of caregiving procedures. This requires formally incorporated technology guidelines and continuous training of staff. As developing and implementing technology to promote social participation faces substantial barriers as long as social health is not recognized on equal terms as the physical and mental health domains, first, social health needs to be acknowledged as a priority which requires major efforts at the societal-, organizational and individual levels.

Explanation and examples

Cross-sectional data from a national online survey conducted among German nursing homes, on the impact of the COVID-19 pandemic, showed that efforts were made to ensure social participation among residents with dementia, and the use of technology in doing so.A large proportion of respondents observed an increase in at least one Behavioural and Psychological Symptom in Dementia (BPSD) in residents with dementia. Many reported that social activities in the nursing home were cancelled, which was due to COVID-19 cases and staff shortages from 5 % and up, revealing just how easily neglectable social health strategies in nursing homes are. Half of all respondents reported having had no formal training in the use of social technology to engage their residents with dementia. Although more than 70% had provided opportunities for using technology for social purposes, the low frequency of established procedures seems to indicate ad hoc solutions to ensure the social health of residents with dementia.

At the micro-, meso- and macro level requirements were identified to promote social participation using technology. These requirements revealed that integrating technological solutions in institutional settings, requires efforts at individual-, organisational and societal level.

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

Residents with dementia and their family members should be involved when planning to introduce pet robots in long-term care settings and when using pet robots.

Explanation and examples

In a consensus-building exercise involving 56 international experts (care professionals, organisational leaders and researchers), experts established the importance of including residents with dementia and their family in the implementation of pet robots in long-term care facilities. When planning to adopt pet robots in long-term care facilities, the opinions of residents with dementia and their family members must be sought. Examples include

• Seeking their opinions on which pet robot to purchase by showing them different pet robots, and asking or observing their reactions to each robot
• Seeking feedback on their preferred ways of using robots, such as whether they prefer the robots to be individualised or shared with other residents.

When using pet robots, residents with dementia and their family members must be supported to be actively involved. For example:

• Residents may be involved in “taking care” of robots.
• Family members could provide support or use the robots as topics of conversations during visits.

Guidance

Before introducing pet robots in a long-term care facility, consensus discussions among stakeholders, such as care professionals and managers, should be conducted, to discuss whether (and why) pet robots should or should not be introduced for residents with dementia. In addition, the facility’s readiness to introduce pet robots should be carefully considered.

Explanation and examples

In a modified Delphi study involving 56 international experts (care professionals, organisational leaders and researchers), experts agreed that these strategies are critical to support the implementation of pet robots in long-term care facilities. Consensus discussions should involve all care providers who may be directly or indirectly involved in the care of residents with dementia. Examples of discussions may include:

• The importance of bringing in/using pet robots to address a chosen problem (e.g. to address residents’ needs or support care staff in their delivery of care for residents with dementia)
• Appropriateness of using pet robots to address the problem(s), such as whether they align with workflows.

In addition, the organisation’s readiness to implement pet robots should also be assessed. Examples include:

• Assessment of financial resources
• Assessment of manpower and logistical resources (e.g. sufficient space and charging point).

Guidance

Care staff should be educated about the use of pet robots in dementia care through educational meetings that are tailored to the needs of different staff. In addition, they should be provided with ongoing trainings to support them in applying this knowledge as part of their delivery of dementia care.

Explanation and examples

In a modified Delphi study involving 56 international experts (care professionals, organisational leaders and researchers), educational meetings and ongoing trainings are identified as critical strategies to support the implementation of pet robots in long-term care facilities. The purpose of conducting educational meetings is to provide care staff with overall knowledge on the role of pet robots for dementia care. Such sessions should be tailored to the different needs of each care professional. Examples of content may include:

• Evidence supporting the use of pet robots in dementia care, such as information about their impacts on residents, who may benefit and who may be at risk of distress
• How pet robots can support caregiving

While the purpose of education is to provide overall knowledge about pet robots, the purpose of conducting ongoing training is to support care professionals to acquire practical skills and confidence to use pet robots in dementia care giving. Examples include:

• On-the-job training
• Structured supervision
• Training based on each staff experiences/knowledge.

Guidance

The cost of pet robots can prohibit their uptake in long-term care facilities for dementia care. There may also be additional costs involved in implementing pet robots, such as manpower and time related costs. Different funding sources need to be considered to acquire sufficient funding to support the implementation effort.

Explanation and examples

In a qualitative study involving 22 care providers from nursing homes, the cost of purchasing pet robots have been reported as a concern. Some care providers reported the use of charity funds to support the purchase of pet robots. In a modified Delphi study, experts (care professionals, organisational leaders and researchers) established that it is necessary to creatively seek and acquire funding to support the implementation of pet robots in long-term care facilities. Examples of potential funding sources may include:

• Existing funding resources
• Raising private funds (such as donations or charity)
• Shifting or (re)prioritising the use of funds within the organisation based on their impact on people with dementia

The funds may be used to support different aspects of implementation. Examples include:

• Fund the introduction and adoption of pet robots
• Support other time limited actions needed for initial implementation, such as purchasing cleaning materials
• Training (e.g. developing educational materials)

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

Guidance

See recommendation no. 3.3.4.4

Guidance

See recommendation no. 3.1.6.7