Best Practice Guidance
Human Interaction with Technology in Dementia

Recommendations

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 selling empowering products for people with dementia and carers and avoid stigmatizing stereotypes

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.

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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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Addressing stigma through online and offline service options

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.

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Design easier to use everyday ICTs (Everyday Information Communication Technologies)

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

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Take a multi-perspective approach when procuring public space technologies to improve usability internationally

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.

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Cashback is a replacement banking service rurally and local retailers must be aware of legal obligations to accept chip and signature cards

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.

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Private surveillance car parking companies must not discriminate against drivers with dementia and must ensure useability by giving control and feedback to users

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.

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Provide comprehensive occupational therapy assessments taking account of everyday technology use to improve identification of support needs

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.

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Technology for meaningful activities

Optimising the process of prototyping and usability testing

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.

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Creating a suitable user experience and design

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.

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Everyday fluctuations

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.

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Assessing the Ability to Use Everyday Technologies by self-perceived reports as well as observations

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.

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Health care technologies

Portable and unobtrusive devices for electronic records are optimal for staff and residents

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.

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Applications promoting the effective use of electronic records are required

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.

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Functionalities of electronic records should be tailored to the nursing home environment

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.

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Electronic care documentation should meet the needs of nursing home staff caring for people with dementia

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.

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Electronic care documentation should meet the needs of people with dementia in nursing homes

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.

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Technology design focused on the characteristics of the population provides usability

Guidance

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

Explanation and Examples

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

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

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

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

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

Guidance

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

Explanation and Examples

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

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Social Health Domain 3: Technology to promote social participation

Include social interaction elements in technological interventions that aim to promote social participation

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).

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