Best Practice Guidance
Human Interaction with Technology in Dementia

themes: People with dementia

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

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

Consider different needs

Guidance

During the development or use of technological devices, the individual needs of the person with cognitive impairments (e.g. dementia or MCI) and carer should be considered. This includes not only everyday technology, but also surveillance technology (ST) and technology used during cognitive training sessions. Increased awareness and offered assistance is recommended.

Explanation and Examples

People with dementia tend to face more and other difficulties than people with MCI when using relevant everyday technologies such as cash machines, calling or texting with a cell phone or using a DVD player, and thus need more assistance in technology use. This may also be the case with ST and technology used for cognitive training.

For example, ST are often presented as a neutral technology, which enables carers to minimise risk. However, the views of users have not been sought by ST developers, which limits the usefulness of ST and suggests the need for the empowerment of user groups. Therefore, a study of audience reception was undertaken through focus groups, online discussions (Netherlands) and PPI (UK). Hereby people with dementia could speak for themselves, which has allowed their needs to be compared with carers. There was no clear recognition that such needs differed between people with dementia and carers, and it has not previously been recognized that this leads to a mismatch between a user’s situation and the product design and how this plays out in the acceptance and use of ST. Although, carers and people with dementia have not yet reached an agreement on the privacy debate and on how the media should portray dementia, it is clear that carers often tamper with ST to make up for a lack in current designs. The results suggest that ST are being resold or rebranded by providers to use for dementia, whilst users may experience physical and cognitive barriers to using such technologies for safety reasons.

Regarding technology for cognitive training: As older people have little experience with technological devices, and so may experience problems, professionals involved in cognitive training should monitor training sessions from the outset. The professional must observe and ensure the ability of the older person to understand the instructions given through the technological device, so that the person can really benefit from the cognitive training by computer. For example, in sessions with GRADIOR, a cognitive rehabilitation program, there is always a professional in charge who helps older people to understand the exercises they may experience difficulty with.

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Social Health Domain 1: Fulfill ones potential and obligations

Facilitators of online peer support groups using video meetings should provide clear guidance and support to allow people to use the platform

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).
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Facilitators and moderators of online peer support should have good listening and communication skills and a supportive attitude

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.

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Social Health Domain 2: Manage ones own life and promote independence
Social Health Domain 3: Technology to promote social participation

Pet robot design preferences of people with dementia need further investigation

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.

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Consider the use of digital generic photos when designing psychosocial interventions that aim to improve social interaction, mood, and quality of life

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.

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Evaluating the effectiveness of specific contemporary technology

The rapid growth of the technological landscape and related new services have the potential to improve the effectiveness and cost-effectiveness of health and social services and facilitate social participation and engagement in activities. But which technology is effective and how is this evaluated best? This section provides recommendations to evaluate the effectiveness of technology in daily life, meaningful activities and healthcare services as well as of technologies aimed to promote the Social Health of people with dementia. Examples of useful technologies in some of these areas are provided.
Social Health Domain 1: Fulfill ones potential and obligations

Consider recruiting people with dementia through social media platforms for the development and evaluation of technological interventions

Guidance

People with dementia are active on social media platforms. For this reason, researchers recruiting participants for their studies on the development, testing or evaluation of psychosocial technological interventions should consider advertising the study details on different social media platforms.

Explanation and Examples:

Devices using information and communication technology (ICT) are increasingly being used by older people, including people with dementia. We conducted an online survey with 143 people with dementia to explore if and how they use social media. Results from the survey revealed that more than half of the participants actively use social media. More people with young-onset dementia were active on social media, though a large proportion of people with dementia who were 65 years and older were actively using social media too. In addition, a large proportion of the participants themselves were recruited through Twitter and Facebook. Our results suggest that people with dementia can be reached through social media, which is of relevance for researchers looking to recruit participants for the development, testing or evaluation of psychosocial technological interventions.

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Social Health Domain 3: Technology to promote social participation

Consider using low-cost pet robots to support the psychosocial health of people living with dementia and their caregivers

Guidance

Low-cost pet robots demonstrate the potential to positively impact the psychosocial health of people with dementia and their caregivers. Due to their lower cost, they may be more accessible and affordable and should therefore be considered for use in dementia care.

Explanation and examples

Although pet robots have demonstrated positive impacts on the wellbeing of people with dementia, their affordability can impede their uptake in dementia care. A scoping review, content analysis of consumer reviews and a qualitative study showed that the impacts of low-cost pet robots on people with dementia resembled the effects of other higher costed (but more advanced) pet robots. These included improved mood, companionship, increased activity engagement and reduced anxiety. Caregivers also experienced knock-on effects, such as feelings of joy and relief. Low-cost pet robots are more widely accessible to the public since they can be purchased off-the-shelf. While promising, findings of their positive impacts are subject to bias. More rigorous studies are necessary to confirm their impacts.

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Implementation of technology in dementia care: facilitators & barriers

Successful implementation of technology in dementia care depends not merely on its effectiveness but also on other facilitating or impeding factors related to e.g. the personal living environment (privacy, autonomy and obtrusiveness); the outside world (stigma and human contact); design (personalisability, affordability and safety), and ethics on these subjects.  This section provides recommendations on the implementation of technology in everyday life, for meaningful activities, healthcare technology and technology promoting Social Health.
Social Health Domain 1: Fulfill ones potential and obligations

Health and social care professionals working with people with Young Onset Dementia should clearly signpost to online peer support as part of post-diagnostic care

Guidance

Health and social care professionals working with people with Young Onset Dementia should clearly signpost to online peer support services, to help people find the support they need.

Explanation and Examples

Peer support can be highly beneficial for people with Young Onset Dementia and make the post-diagnostic period more positive. It can contribute to different aspects of social health: their ability to fulfill one’s potential and obligations, management of their own life and participation in social activities. People can share experiences, information, and coping skills in these areas. This goes beyond support that health and social care professionals, or friends and family can give. Given these benefits, peer support should be accessible to every person living with Young Onset Dementia. However, access to specialised (support) services varies widely across the UK. Therefore, online peer support could offer a solution.

Our research showed that people with Young Onset Dementia experienced a severe lack of support and signposting to (peer) support services. Benefits of having peer support online included not having to travel, not having the sensory overload of being in a room full of people, and finding it comfortable to join from their own home. Having their support group gave many of them hope again, and some called it their lifeline. Our online survey showed that the main reason why people did not use online peer support was that they did not know it existed, or they did not know where to look for support. Some of those who did not have experience with online peer support would be interested if they knew where to find it. This indicates a need for professionals to clearly signpost to (online) peer support services and information.

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Moderators of online peer support groups for people with Young Onset Dementia on text-based platforms should ensure the group is closed, and provide a clear description of the purpose of the group, who it is for, and what the ground rules are

Guidance

Online peer support groups on text-based platforms, such as Facebook groups or discussion forums, can have a much larger membership than in-person groups or groups using videoconferencing platforms. Moderators should provide a clear description of the purpose of the group and who it is for, and what the ground rules are.

Explanation and Examples

Findings from an extensive systematic literature research on online peer support for people with different chronic, neurodegenerative conditions, identified several elements of best practice. Online health communities, for example on social media or discussion forums can have a large membership and tend to be more anonymous in nature. To prevent access by people for whom the group is not really intended, the group should be closed. This means that the moderators need to approve before new members can join. This goes hand in hand with the purpose of the group and who it is for. For example, if the group is only for people living with a Young Onset Dementia diagnosis, moderators may want to avoid that family members, healthcare professionals, or researchers access the group. This is to allow the members to speak freely and to respect their privacy. It is also important to clearly indicate, preferably on the home page, who the group is for. Is it only for people with a diagnosis, only for carers, or for both? Finally, it is the responsibility of the moderator to intervene when someone shares harmful, misleading, or disrespectful content in the group. The moderator should delete such messages and, if possible, contact the author. In this way the moderator ensures the group remains a safe space for everyone.

The findings of the systematic literature review were echoed by people with Young Onset Dementia who took part in individual interviews and had experiences with peer support on text-based platforms.

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

Signpost people with dementia to social media as accessible, virtual platforms to share experiences and information

Guidance

Social media have the potential to be an additional supportive medium for people with dementia. It is recommended to signpost individuals with dementia to social media platforms to leverage their potential.

Explanation and Examples:

We conducted an online survey with 143 people with dementia to explore how they used social media platforms and what kind of information they shared on their accounts. Our findings show that people with dementia use various different social media platforms like Facebook or Twitter to raise awareness, give and receive support, and to share their experiences of living with dementia. As subsequent older generations will use technology more and, consequently, will become more tech-savvy, social media platforms will become more relevant for this population. As post-diagnostic support is often lacking, social media platforms can be used as medium that is widely available and easily accessible to offer people with dementia additional (peer) support. Examples of these platforms include online forums like Talking Point by the Alzheimer’s Society UK, Facebook groups run by charities or dementia organisations, or Twitter where many people with dementia are active. Signposting people with dementia to these social media platforms is therefore recommended.

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Social Health Domain 3: Technology to promote social participation