Best Practice Guidance
Human Interaction with Technology in Dementia

target groups: Policymakers

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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Adaptations to enable more accessible public transport

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.

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Health care technologies

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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Health care technologies

The need for more high-quality research into development, implementation and evaluation of complex health technologies

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.

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Further implementation of effective Internet-based carer training programmes recommended

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.

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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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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.
Technology in everyday life

Consider involving occupational therapists to enable people with dementia to use everyday technology

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.

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Provide non-ICT (Information Communication Technology) options for people with dementia who need it

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.

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Technology for meaningful activities

Ensure free access to the internet for all residents in care homes

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.

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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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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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