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

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

Explanation and Examples

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

Guidance

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

Explanation and Examples

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

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

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

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

Better research using high-quality study designs is needed to develop, implement and evaluate complex palliative care interventions (targeting whole-system change) for people with dementia living and dying at home.

Explanation

Our systematic review found that the existing evidence base remains insufficient and is generally too weak to robustly assess the effects of palliative care interventions for people with dementia living at home.

Guidance

Internet training programmes for family carers have potential to increase carers’ well-being, to reduce distress, depression and anxiety symptoms and to increase knowledge skills.

Explanation and example

A systematic review (Egan et al. 2018) about online training programmes for family carers reported on two studies in which improvements in depression symptoms were demonstrated, two studies with overall improvements in anxiety and two studies showing reduction of stress symptoms. Good examples of informative websites and internet training programmes for family carers are ‘Mastery over Dementia’, iSupport, ‘iCARE: Stress management eTraining programme’ and the STAR E-Learning course.

Guidance

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

Explanation and example

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

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

Guidance

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

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

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

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

Explanation

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

Guidance

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

Explanation and Example

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

Guidance

To 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

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

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.