Best Practice Guidance
Human Interaction with Technology in Dementia

target groups: Researchers

Practical, cognitive & social factors to improve usability of technology for people with dementia

Technologies are increasingly vital in today’s activities in homes and communities. Nevertheless, little attention has been given to the consequences of the increasing complexity and reliance on them, for example, at home, in shops, traffic situations, meaningful activities and health care services. The users’ ability to manage products and services has been largely neglected or taken for granted. People with dementia often do not use the available technology because it does not match their needs and capacities. This section provides recommendations to improve the usability of technology used in daily life, for meaningful activities, in healthcare and in the context of promoting the Social Health of people with dementia.
Technology in everyday life

Consider different needs

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.

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Consider undesired side effects of dementia prevention technologies and discourses

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.

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Health care technologies

Technology design focused on the characteristics of the population provides usability

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.

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Consider user-centred design in the development of computer-based cognitive rehabilitation programs for people with dementia

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.

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Evaluating the effectiveness of specific contemporary technology

The rapid growth of the technological landscape and related new services have the potential to improve the effectiveness and cost-effectiveness of health and social services and facilitate social participation and engagement in activities. But which technology is effective and how is this evaluated best? This section provides recommendations to evaluate the effectiveness of technology in daily life, meaningful activities and healthcare services as well as of technologies aimed to promote the Social Health of people with dementia. Examples of useful technologies in some of these areas are provided.
Technology in everyday life

Ecological validity contributes to the effectiveness of a technology

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.

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Technology for meaningful activities

Consider potential benefits in family carers when persons with dementia use technology

Guidance

When persons with dementia use technology for meaningful activities this may not only impact their own quality of life but also the well-being of their (primary) family carers.

Explanation and example

In the exergaming project, people with dementia were engaged in an exergaming activity or activities as usual in day care centres. We studied the effects on persons with dementia as well as on their family carers. In carers, positive effects were found in favour of the exergaming intervention, i.e. on the carers’ distress related to their relative’s neuropsychiatric symptoms and the carers’ sense of competence (after a three months intervention period).

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Take actions to alleviate carers’ involvement in eHealth research

Guidance

Effectiveness research into eHealth interventions for community dwelling persons with dementia, often rely on information from and involvement of family carers. As they may already be (over)burdened by their caregiver tasks, participation in effectiveness research may be denied. It will be helpful to think of methods to support informal carers to participate in research.

Explanation and example

In the exergaming project, a bottleneck of participation of couples into the effectiveness study, was the refusal of family carers to participate because they were already (over)burdened. To accommodate caregivers they were offered support in filling out questionnaires and a little present to thank them for their contribution. This seems to have added slightly in the number of participants in our study. Other strategies to alleviate burden of participation in eHealth research may also be considered, like data logging or ecological momentary assessments.

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Consider cost-effectiveness research into eHealth interventions

Guidance

Methodological sound effectiveness research into eHealth interventions for community dwelling persons with dementia is growing. To determine the added value of such interventions, it is important to look at their effects and costs. This gives a balanced picture and helps policy makers to make the right decisions when deploying eHealth interventions.

Explanation and example

Positive effects were found of exergaming compared to usual activities in day care centres. The provision of exergaming brought additional costs related to the equipment (purchase and maintenance) and staff involvement. Compared to non-technology based interventions, especially equipment costs can be a cost driver.

In the exergaming study, the participating organisations received a list of potential funders for the equipment to be used, and various funding organisations (charitable organizations) were willing to pay for it. In some cases this helped to participate in the study.

Taking into account the intervention costs may help day care centres to balance the positive effects of using the eHealth interventions (for people with dementia and their carers) against the long-term costs (to be covered by own funding or external funding). This will promote a well-informed implementation and securing of the eHealth intervention.

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Health care technologies

Call for research on online training programs for carers’ mechanisms of change to increase the quality of online training for families of people with dementia

Guidance

Evaluations of the effectiveness of internet training programs should explore mechanisms of change and aspects of the intervention design, such as reliability, the type of device used and modality of the intervention.

Explanation and example

The systematic review (Egan et al 2018) of internet training support for familiy carers lacks detail about potential factors which may influence the effectiveness of online programs (i.e. type of connectivity, development of the intervention, usability, etc.). The quality of individual studies selected for the systematic review was limited as more than 50% of the studies showed incomplete data reporting, and 25% showed a selective reporting of outcomes according to the risk of bias assessment performed making the generalization of the results difficult. However, the systematic review reported improvements on carer’s mental health outcomes by internet training.

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Call for research on moderators of online training programs for carers’ of people with dementia

Guidance

Analyses of the moderation effect of demographic characteristic of the carers and other characteristics of the person with dementia on the internet training programs outcomes should be encouraged.

Explanation and example

Several studies have been done to find moderators of effects of online training programs for carers of people with dementia. Some studies have demonstrated that some programs were more effective for certain subgroups of carers. However, in our analyses we could not replicate these findings. Our analyses on the effect of age, gender, level of education, relationship with the person with dementia, functional status of the person with dementia and frequency of appearance of challenging behaviour suggests that the program is equally effective for all the subgroups analysed. More research is needed before we have definitive answers. A better understanding of moderators of carers’ training programs could lead to better tailoring of programs based on the specific characteristic of the carer.

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Consider the factors that potentially determine adherence to a computer-based cognitive rehabilitation program to generate corresponding adaptations

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.

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Social Health Domain 2: Manage ones own life and promote independence

Technologies designed to improve social health in people with dementia should be evaluated in high quality studies to effectively support decision-making

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.

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Social Health Domain 3: Technology to promote social participation

More studies required to investigate the impacts of low-cost pet robots in dementia care

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.

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Implementation of technology in dementia care: facilitators & barriers

Successful implementation of technology in dementia care depends not merely on its effectiveness but also on other facilitating or impeding factors related to e.g. the personal living environment (privacy, autonomy and obtrusiveness); the outside world (stigma and human contact); design (personalisability, affordability and safety), and ethics on these subjects.  This section provides recommendations on the implementation of technology in everyday life, for meaningful activities, healthcare technology and technology promoting Social Health.
Health care technologies

Increase family carers’ awareness about the use and benefits of online 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.

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Involve all users during the development process of complex health technologies

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.

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Make complex health technologies flexible for tailoring to local contexts

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.

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Ensure management engagement when implementing complex health technologies

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.

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Target multiple levels when implementing complex health technology in a specific context

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.

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Accessibility to technology should be ensured for all people with dementia

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.

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Take into account the level of cognitive impairment when implementing technologies

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.

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Ensure the involvement of a dedicated trainer throughout the entire implementation of a complex health technology in nursing/care homes or other institutional settings

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.

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Ensure a clear distinction of roles and responsibilities for staff when implementing complex health technologies in institutional settings

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.
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Social Health Domain 3: Technology to promote social participation

Consider different contextual factors to implement social robots in dementia care

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.

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