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

People involved in the provision of support to family carers, such as health professionals, patient organizations, should inform them about the potential benefits derived from the use of online interventions and actively promote their use.

Explanation and example

Despite the potential benefits of Internet carer support and training programmes, family carers are not always informed about the existence and use of online alternatives to traditional face-to-face support programmes. Extra attention should be paid to inform and motivate family carers to start and continue using Internet training programmes, especially in countries where the use of the Internet for health related purposes is not common yet. India trial (Mehta et al. 2018) Rrecruitment and adherence for a randomized controlled trial of an online support programme in India (Mehta et al. 2018) turned out to be challenging as most of the family carers were not accustomed to access to the Internet for health-related reasons.

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

Researchers and developers of web-based psychosocial interventions for people with dementia and carers should consider working together with existing dementia charities and support organisations during the intervention development. During the implementation and dissemination phase, these charities and organisations can be supportive in informing the public about the intervention, thereby increasing its potential use.

Explanation and Examples:

Existing research has shown the need for easily accessible psychosocial interventions for people with dementia and carers. Many people affected by dementia reach out to existing and well-established dementia support organisations and charities, such as Alzheimer’s Society UK in the UK, after they received the diagnosis. We conducted focus groups with 17 people with dementia and family carers to inform the development of a web-based psychosocial intervention. In these consultations, several participants pointed out that the intervention needs to be easy to find. Therefore, they suggested integrating it into the online content of dementia support organisations since these organisations are often the first source of support for people with dementia and carers. For example, the dementia support organisation (e.g., Alzheimer’s Society UK) could have a link on its website for people with dementia and carers that leads them to the intervention. Working together with these dementia support organisations during the intervention development phase can enhance the intervention’s implementation, dissemination, and future use. It will also enable easy access to the intervention and enhance its credibility and trustworthiness.

Guidance

See recommendation no. 3.3.4.1

Guidance

See recommendation no. 3.3.4.2

Guidance

See recommendation no. 3.3.4.1

Guidance

See recommendation no. 3.3.4.2

Guidance

To successfully implement psychosocial applications of technology in dementia care, it is recommended to carry out implementation processes adapted to the context of interest and to adapt training materials socio-culturally.

Explanation/examples:

A qualitative study was performed to trace facilitators and barriers to implementing an evidence-based Dutch psychosocial support programme for people with dementia and carers with greater social integration and better cost-benefit ratio, the Meeting Centres Support Programme (MCSP), in Spanish-speaking countries. Among the potential barriers identified, the most relevant were associated with the lack of adapted training materials to the sociocultural context and the difference between urban and rural populations, particularly the access to populations living in remote areas.

It is therefore recommended that an implementation process be carried out that takes into account the characteristics of the region concerned, in addition to developing actions to overcome specific barriers, such as the creation of technological tools to offer the support programme remotely to provide access to the rural population. For example, as a result of this study, the ‘Introductory Online Course for the Implementation of Meeting Centres for People with Dementia and their Caregivers’ was developed and adapted for Spanish-speaking countries in the Spanish language (available at https://e4you.org/es/moocs/implementacion-de-centros-de-encuentro-para-personas-con-demencia-y-sus-cuidadores). The course consists of eight modules setting out the theoretical background and practical implementation steps in the preparation, implementation and continuation phase.

Also, to offer an alternative to the face-to-face caregivers’ programme included in the MCSP, the iSupport-Sp, an evidence-based training and support programme for caregivers of people with dementia, was developed in an online e-learning format in the Spanish language (available at https://learning.bluece.eu/). This platform aims to offer a support service for caregivers living in remote rural areas in Spain.

Guidance

See recommendation no. 3.3.4.4