Best Practice Guidance
Human Interaction with Technology in Dementia

Guidance

Providers and marketers of ST should not communicate a wanderer with dementia discourse. Rather they should focus on useful person-centred products and communicate this in a non-stigmatising way towards family carers and people living with dementia in order to provide empowering products.

Explanations and examples

Surveillance Technology (ST), such as GPS tracking devices are used as a resilience tool to increase the safety and independence of people with dementia that portray people with dementia to sell such technologies in a way that encourages stereotypes and contribute to a misunderstanding of dementia. This in turn could also impact technology development. This qualitative research undertook three studies of production (who made what), audience reception (what do users need) and textual analysis (what media techniques are used to attract attention) focused on the UK, Sweden and the Netherlands. The production study examined 242 websites that sell ST and a wanderer discourse with dementia was found. These websites give minimum representation of people with dementia using technology but represent overburdened younger-female carers, who are in need for a locating safety product to covertly use for wandering people with dementia, children and pets. Relying on stereotypes and “not so useful” technology will hinder resilience for people with dementia. Rather, it may imply the continuous stigmatisation that occurs when people with dementia are stereotyped and disregarded as human technology users.

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

Service providers should counter the stigmatising effect of not having access to, or not being a skilled user of, Everyday Technologies, for people with dementia and consider strategies to enhance participation, providing offline and online choices for all public services.

Explanation and Examples

Interviews were performed with 128 older people with and without dementia in the UK, and 69 people with and without dementia in Sweden. In both the UK and Swedish studies, people with dementia reported significantly lower use of Everyday Technologies compared to older people without dementia. People with dementia also reported significantly lower participation in places and activities within public space. Reduced ability to use Everyday Technologies was linked to reduced participation in places visited and activities within public space for people with dementia. Community-based consultations with older people with and without dementia across London showed that Everyday Technologies can provide opportunities to participate in services, e.g. eHealth and online banking. However, without face-to-face or written options (e.g. offline), people with dementia are at risk of stigma associated with digital exclusion. Barriers to participation in their everyday lives can lead to social isolation.

Guidance

Technology developers should be aware that the challenge of using everyday information communication technologies can be high for older adults, including some people with dementia. They should use inclusive design that addresses cognitive useability to reduce the level of challenge so that more people with cognitive impairments can use ICTs.

Explanation and Examples

A standardized questionnaire investigated how 35 people living with dementia and 34 people with no known cognitive impairment in Sweden perceived their ability to use 90 ETs on a 5 step rating scale. This data was analysed (in a Rasch model) to produce a challenge measure for each of the 31 EICTs, showing how difficult or easy they were to use. Landline telephone was the easiest EICT to use. Scores for smartphone functions (make calls, receive calls, alarm, camera) were at the easier end of the challenge hierarchy and comparable to (or lower than) the challenge of the same functions on a push button mobile phone. These smartphone functions were less relevant to the group of people with dementia than the group without. Using a computer for the full range of functions (shopping, banking, email etc.) scored in the top half of the challenge of the hierarchy and using a tablet to search the web was most difficult. No other tablet functions (i.e. banking, email) could be scored since not enough people considered those functions relevant. Several smartphone functions (i.e. game, social media, transaction) could not be scored for the same reason

Guidance

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

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

Explanation and Examples

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

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

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

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

Guidance

Due to UK bank and post office closures, local shops have a more central role in ensuring that older adults have continued, secure access to cash via face-to-face services offering card payments and cashback. Staff, managers and proprietors need to be aware of legal obligations to accept customers’ chip and signature cards, which support some people with dementia to access their finances. Other countries may need to make legal provisions to ensure financial services and retailers do not discriminate against people with disabilities regarding payment methods and access to cash.

Explanation and Examples

Cash can be a preferred option among people of all ages – including some older adults with dementia – who prefer to retain visual control over their spend. Bank and post office closures have occurred across the UK, affecting particularly people in rural areas, who may now face increased travel distances to reach a branch.

Technologies (ATMs and chip and PIN devices) are therefore becoming less avoidable in the process of accessing cash, however, can present problems for people living with dementia. A case study of 13 rurally dwelling older adults in the UK with mild dementia gathered data from in home interviews involving two structured questionnaires, observations, maps, and subsequent relevant document collation (i.e. public transport timetables, local news reports).

The importance of local grocery shops and supermarkets in providing a trusted, face-to-face option for accessing cash was highlighted, particularly among cases who lived alone. Subsequent document analysis found some retailers were unaware of legal obligations to accept chip and signature cards leading to occasional refusals.

Raising retailer awareness of the importance of card payment options rurally, and obligations to accept signature cards, could support people living with dementia to continue independently accessing their finances locally.

Guidance

Private car parking companies that use vehicle number plate recognition and surveillance technologies must make accessible provisions that account for memory difficulties common among drivers with mild dementia. Parking facilities must allow users control and provide feedback about time of arrival. Contractors of these companies must ensure the systems they agree to are useable for their customers living with dementia.

Explanation and Examples

Driving remains essential for daily life in rural parts of the UK where public transport infrastructure is sparse. Driving also means handling continually evolving technologies: parking ticket machines (cash, cashless, SMS/app, number plate inputting), automated barriers, fuel pumps, parking surveillance systems.

These technologies may increase the complexity of parking and driving, particularly for people living with dementia’, and could impact some people’s ability to complete everyday activities. A case study of 13 rurally dwelling older adults with mild dementia gathered data from in-home interviews involving two structured questionnaires, observations, maps, and subsequent relevant document collation (i.e. public transport timetables, local news reports).

Driving was highlighted as centrally important to daily life, particularly for cases living alone. Carparks which used number plate surveillance on entry and exit were highlighted by one case as particularly problematic. These types of parking technologies offer drivers no feedback about time of arrival, nor any method by which drivers can control their own actions in relation to rules and restrictions leading to unfair discrimination.

Short term memory difficulties common among people with mild dementia increase their risk of being unfairly penalised by these systems, leading to curtailed or abandoned activities, or handling complex administration of fines.

Guidance

People with dementia reporting new difficulties using everyday technologies should be offered a comprehensive assessment by an occupational therapist. While everyday technology can be assistive to everyday activities, in some cases, a pattern of detechnologising indicates instability in the person’s wider pattern of participation and may indicate a need for support, or change in housing situation.

Explanation and Examples

Everyday life, including outside home, more and more involves the use of everyday technologies (mobiles, smartphones, ATMs, transport ticket machines etc), which could even influence the places that people go to. A cross-sectional, quantitative study with 128 older adults with and without dementia in England was conducted using the Everyday Technology Use Questionnaire and the Participation in Places and Activities Outside Home questionnaire.

Results of statistical analyses confirmed that for some people; going to a lower amount of places was related to perceiving a lower amount of technologies relevant in daily life and living in a relatively more deprived area. A subsequent case study was conducted with 13 rurally dwelling older adults from the same sample (using the same questionnaires with additional interview notes, observations, maps, subsequent relevant document collation i.e. mobile and internet network availability reports).

Findings highlighted a person could perceive detechnologising, particularly around the home and garden, as one of several signs of vulnerability when living alone rurally. Such vulnerability was then a sign of a need for support to make living at home more tenable, including to increase safety in the grounds surrounding home, or was a sign of a need to relocate.

Guidance

Gather feedback from people with dementia on working prototypes rather than paper prototypes.

Explanation and example

Work with Eumedianet and the systematic review indicated that people with dementia found it difficult to comment on paper prototypes as it did not provide them with enough knowledge on the future digital application.

Guidance

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

Explanation and example

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

Guidance

Consider using smartphone-based experience sampling apps to measure everyday fluctuations of variables such as mood, behaviors, or cognition in people with mild cognitive impairments or carers of people with dementia to better understand variations in daily experiences.

Explanation and examples

The ‘Partner in Sight’ intervention for carers of people with dementia, the ‘Monitor-Mi’ study (feasibility of the experience sampling method (ESM) in people with MCI), and the development of two cognitive tasks (mDSST; mVSWMT), all included the experience sampling method (ESM). These studies are first steps towards a better understanding of and support for people with cognitive impairments, such as MCI or dementia, and their carers in everyday life.

The results indicate positive effects on carers’ well-being, feasibility of using the ESM in people with MCI, and internal validity when assessing momentary cognition in healthy older individuals. The experience sampling method has a high ecological validity with a reduced memory bias, allows to see fluctuations, and uncovers a complex picture of affect, behaviour, and other variables in everyday life. It can be used to increase awareness of own daily patterns and motivate behavioural changes towards more meaningful activities.

Guidance

To understand the ability of the elderly with cognitive impairments to use everyday technology observe the interaction but also ask about their views.

Explanation and examples

Via an observation (guided by the META), the person-technology interaction can be described in detail, e.g. does the person press buttons/the screen with an adequate force or are steps performed in a logical order. This can help to determine which elements of a specific technology are causing problems and might be particularly useful for designing intervention and the development of technology. Through a self-perceived report (S-ETUQ), the individual can reflect on a wider range of technologies and the impact of technology use to perform well in (in relation to) everyday life can be depicted. For example, if someone has problems using the ticket machine for public transport or the ATM, this might impact participating in society; if the individual has problems with using the dishwasher or vacuum cleaner, this might impact the hygiene and well-being at home.

Guidance

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

Explanation and Examples

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

Guidance

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

Explanation and Examples

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

Guidance

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

Explanation and Examples

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

Guidance

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

Explanation and Examples

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

Guidance

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

Explanation and Examples

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

Guidance

To improve usability design of the technology should be developed specifically on the characteristics of the person with dementia, with respect to vision, auditory and cognitive capacities.

Explanation and Examples

Dementia is mainly suffered by elderly people. It´s well known the visual and auditorily perception changes. Shapes, colours, glares, temporal frequency of stimuli, visual acuity, and relevant visual stimuli can be bad perceived. Therefore, the design of any technology should be focused and fitted to these perceptual changes. Consequently, it is important to increase the lighting of the context of the task, the level of contrast and font size.

Equally elderly people might suffer impaired hearing, especially in sensitivity to high frequencies, discrimination of tones and differentiation of the speech of the background noise. Therefore, it is necessary for any technology to increase the intensity of the stimuli, control the background noise, avoid stimuli with high frequencies and adapt the speed of the words.

The design of the technology should take into account the cognitive impairment of a person with dementia (type, level, and deficits associated with impairment). Technology for rehabilitation must comprise different difficulty levels, take slow processing speed into account by extending response intervals of exercises, and an increase the variety in types of exercises.

The degree of usability of a technology will influence the user´s experience, generating a degree of satisfaction in the person with dementia that will affect their level of motivation to continue using a rehabilitation program such as Gradior.

Guidance

User-centered design should be considered in the development of any technology or computer-based program for cognitive rehabilitation in people with dementia.

Explanation and Examples

User-centered design is a methodology applied in the development of programs or new technologies for cognitive rehabilitation in people with dementia. This design takes into account the target population from the beginning to the end of the development process, with the aim of investigating their needs and expectations, developing a prototype that meets these needs and evaluating the final prototype based on usability and user experience criteria.

Guidance

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

Explanation and Examples

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

Guidance

People with Young Onset Dementia can experience difficulties using technology or particular platforms for online peer support. Facilitators of video meetings and moderators of text-based platforms (such as Facebook groups or discussion forums) should provide clear guidance on how to use the platform and be available to offer technological assistance where needed.

Explanation and Examples

Our study, including 20 people with Young Onset Dementia across 4 focus groups, showed that most of them experienced difficulties with the online meetings at some point. This included having difficulties getting into the Zoom meeting and installing or updating the software on their devices. Some more specific recommendations included:

• The facilitator of video meetings should send out timely reminders, preferably also on the day of the meeting, including the link to the meeting. This reduces the risk that someone cannot find the link.
• The facilitator should provide a clear step-by-step guide on how to install and use the necessary software.
• The facilitator should open the meeting 10-15 minutes beforehand to allow people to get in and if needed provide remote support (e.g. via email, WhatsApp, or a phone call).

Guidance

It is important that the online peer support group is a safe and non-judgemental environment for everyone in the group. Most of all it is a platform for members to express themselves and support one another. It is the role of the facilitator to make everyone feel included, heard, and safe.

Explanation and Examples

Through 4 focus groups including a total of 20 people with Young Onset Dementia, and 9 individual interviews with people with Young Onset Dementia, people highlighted the importance of the role of the facilitator. Additionally, through speaking with online group facilitators, they shared what they think is important and what helps them to run a meeting well. Facilitators should:

• Have good listening skills and not take over the conversation too much, but let the group decide what to discuss and what is important.

• Make every member of the group feel included and give everyone a chance to speak. If people raise their hand, make sure to address everyone in order.

• Make sure not one person dominates the conversation.

• Call out bullying or abusive behaviour or language.

• Check in with someone after the meeting if they appeared distressed or upset, or if they left suddenly without explaining why.

• Really get to know the members, for example by meeting with them one-on-one before they join the group. In this way facilitators can learn what someone is expecting from the group, and what their needs are.

Guidance

To better understand how digital Patient and Public Involvement (e-PPI) and blended approaches (hybrid digital and face-to-face PPI) in dementia research can be better facilitated, it is recommended to use the E-nabling Digital Co-production framework.

Explanation and Examples

Qualitative research showed that the E-nabling Digital Co-production framework (see Figure 1) is useful for researchers, PPI coordinators and public contributors in advancing understanding of the challenges and opportunities provided by e-PPI and blended (hybrid) approaches. The framework explores preferences and implications of using different modalities of PPI and it can be useful for specific populations and contexts, for example in dementia technology research.

In this context, e-PPI needs to optimise engagement by taking into account participants’ abilities to remember instructions on how to join the e-meeting, their levels of attention and concentration, or the need for explicit cues to the speaker. The level of support must be determined which requires specialised training for facilitators or additional supporters during the meeting.

Facilitators should be aware that online meetings may deprive caregivers of respite and support that would be present face-to-face, and may exclude those who live alone or need more support.

Some of the opportunities of e-PPI are related to removing geographical constraints allowing wider participation and saving resources in terms of time, not having to travel to meetings, arrange venues, catering or other coordination such as transporting PPI representatives.

Guidance

Digital Patient and Public Involvement (e-PPI) provides opportunities, for example, in terms of saving time, not having to travel to meetings, and fewer organizational tasks, such as transporting PPI representatives to the meeting venue. However, to optimize digital Patient and Public Involvement (e-PPI) in dementia research, technological, involvement ability, resources and ethical and welfare conditions should be taken into account.

Explanation and Examples

When applying digital PPI in dementia research it is important to consider four key areas of conditions. Taking these areas into account will allow identifying improvements that can be made to e-PPI to make it more effective and efficient, and problems avoided (see also Figure 2):

1. Technological: refers to constraints, preferences, and opportunities of the used technology.
   Improvements: virtual platforms must be considered as part of the toolkit to perform PPI; hybrid options (digital and face-to-face) must be provided.

2. Resources: is associated with personal resources such as fatigue or personal resilience; professional resources such as increased demands on conducting PPI online; and other resources such as costs of coproduction platforms, phone credit, printing, software, or budget for more frequent meetings.
   Improvements: make sure additional resources are included such as technical support staff or reimbursements for online meeting costs; face-to-face training could help participants to learn how to use the platform.

3. Involvementability: refers to requirements that are related to the success of a design task or process. How involvement differs in a digital space or how it can be translated to different populations online.
   Improvements: smaller groups can help prevent attention wandering; limit the number of people on the screen.

4. Ethical and welfare: describes aspects such as the welfare of public contributors (people with dementia and caregivers), digital exclusion, impact on social communication, data security, etc.
   Improvements: consider the configuration and history of the group when choosing which platform and approach (online, face-to-face or blended) to use; follow-up of public contributors’ welfare

Guidance

Dementia associations’ websites are an ideal place to provide advance care planning information to a wide public. If information about advance care planning is provided, dementia associations should ensure balanced content. Websites should address not only legal and medical information, but also practical guidance on how to engage in and communicate about advance care planning.

Explanation/examples:

Advance care planning is a process that enables individuals to define goals and preferences for their future care. As people with dementia have a high risk of cognitive decline, advance care planning is important. Many people use the internet to find health information. Some of the most consulted sources to search for specific information about dementia are the websites of dementia associations. We conducted a content analysis of dementia associations’ websites in Europe regarding advance care planning information. We included 26 dementia associations’ websites from 20 countries and one European association, covering 12 languages. Ten websites did not mention advance care planning. The information on the remaining 16 varied in terms of themes addressed and amount of information. Legal and medical themes were prominent, while other key advance care planning themes such as communication with family, communication with health professionals, sharing of decisions and the identification of personal values and life goals seem largely to be under-addressed. This is an important gap, given that the drafting of advance directives should be preceded by a process of communication between the person with dementia, their family and their healthcare providers.

Guidance

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

Explanation and Examples:

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

Guidance

An advance care planning website for people with dementia and their family caregivers should focus on providing information and facilitating communication, provided in a user-friendly manner.

Explanation and Examples:

Advance care planning is a process that enables individuals to define goals and preferences for their future care. Digital interactive tools, such as websites, that encourage reflection, communication and/or documentation, may support this group in the advance care planning process. However, considering the specific needs of people with dementia, it is important to develop tools that are adapted to this population. We conducted focus groups with family caregivers (serving both as potential users and proxies for people with dementia) and healthcare professionals caring for people with dementia, to determine their needs in terms of content of the advance care planning website and how this should be delivered. Some specific recommendations included:

• An advance care planning website should focus on providing advance care planning information, including but not limited to advance directives, and offer guidance on how to start an ACP conversation.
• To increase the accessibility and usability of the ACP website, the inclusion of a text-to-speech option, a print option, and the possibility to increase the font size should be considered.

Guidance

See recommendation no. 3.1.4.1

Guidance

See recommendation no. 3.1.4.2

Guidance

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

Explanation and Examples

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

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

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

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

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

Guidance

Technological interventions aiming to promote social participation among older adults (with and without dementia) should incorporate a social interaction element.

Explanation and Examples

The number of people with dementia who live in the community and are socially isolated is growing. Social isolation can negatively affect health and well-being. Therefore, psychosocial interventions are needed to promote the social participation of people with dementia living in the community. A systematic literature review was conducted to explore the effects of technological interventions on the social participation of older adults with and without dementia. Findings from 36 studies suggest that technological interventions that include a social interaction element (e.g. face-to-face contact, phone calls, text messages) are successful in promoting social participation among older adults. Examples are group interventions that provide regular interactions within a group, or interventions that enable to connect and communicate with other people (e.g. family, friends, or other older adults).

Guidance

See recommendation no. 3.1.4.1

Guidance

See recommendation no. 3.1.4.2

Guidance

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

Explanation and Examples

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

Guidance

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

Explanation and Examples

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

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

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

Guidance

The choice for a tablet-based intervention should be based on an assessment of the characteristics of the tablet-users and their specific needs and potential to benefit from the intervention. Care providers should consider prioritizing people with MCI and younger people with MCI/mild dementia to receive tablet-based interventions.

Explanation and Examples:

Evidence from the FindMyApps project showed that on average, tablet interventions could be effective to promote participation in social and other meaningful activities. However, the results also showed that tablets seem to be particularly effective for people with a diagnosis of MCI compared to those with a diagnosis of mild dementia. Regardless of the diagnosis, the results also suggest that younger people with MCI/mild dementia also benefit more from tablet-based interventions than older people. The choice for a tablet-based intervention should therefore be based on an assessment of the tablet-user characteristics, in addition to their needs and potential to benefit from it.

Guidance

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

Explanation and Examples:

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

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