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.