Best Practice Guidance
Human Interaction with Technology in Dementia

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

See recommendation no. 3.1.4.1

Guidance

See recommendation no. 3.1.4.2

Guidance

See recommendation no. 3.1.4.1

Guidance

See recommendation no. 3.1.4.2

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

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.

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.

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.

Guidance

See recommendation no. 3.3.4.1

Guidance

See recommendation no. 3.3.4.2

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.

Guidance

See recommendation no. 3.3.4.1

Guidance

See recommendation no. 3.3.4.2

Guidance

See recommendation no. 3.3.5.5