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

To better understand how digital Patient and Public Involvement (e-PPI) and blended approaches (hybrid digital and face-to-face PPI) in dementia research can be better facilitated, it is recommended to use the E-nabling Digital Co-production framework.

Explanation and Examples

Qualitative research showed that the E-nabling Digital Co-production framework (see Figure 1) is useful for researchers, PPI coordinators and public contributors in advancing understanding of the challenges and opportunities provided by e-PPI and blended (hybrid) approaches. The framework explores preferences and implications of using different modalities of PPI and it can be useful for specific populations and contexts, for example in dementia technology research.

In this context, e-PPI needs to optimise engagement by taking into account participants’ abilities to remember instructions on how to join the e-meeting, their levels of attention and concentration, or the need for explicit cues to the speaker. The level of support must be determined which requires specialised training for facilitators or additional supporters during the meeting.

Facilitators should be aware that online meetings may deprive caregivers of respite and support that would be present face-to-face, and may exclude those who live alone or need more support.

Some of the opportunities of e-PPI are related to removing geographical constraints allowing wider participation and saving resources in terms of time, not having to travel to meetings, arrange venues, catering or other coordination such as transporting PPI representatives.

Guidance

Digital Patient and Public Involvement (e-PPI) provides opportunities, for example, in terms of saving time, not having to travel to meetings, and fewer organizational tasks, such as transporting PPI representatives to the meeting venue. However, to optimize digital Patient and Public Involvement (e-PPI) in dementia research, technological, involvement ability, resources and ethical and welfare conditions should be taken into account.

Explanation and Examples

When applying digital PPI in dementia research it is important to consider four key areas of conditions. Taking these areas into account will allow identifying improvements that can be made to e-PPI to make it more effective and efficient, and problems avoided (see also Figure 2):

1. Technological: refers to constraints, preferences, and opportunities of the used technology.
   Improvements: virtual platforms must be considered as part of the toolkit to perform PPI; hybrid options (digital and face-to-face) must be provided.

2. Resources: is associated with personal resources such as fatigue or personal resilience; professional resources such as increased demands on conducting PPI online; and other resources such as costs of coproduction platforms, phone credit, printing, software, or budget for more frequent meetings.
   Improvements: make sure additional resources are included such as technical support staff or reimbursements for online meeting costs; face-to-face training could help participants to learn how to use the platform.

3. Involvementability: refers to requirements that are related to the success of a design task or process. How involvement differs in a digital space or how it can be translated to different populations online.
   Improvements: smaller groups can help prevent attention wandering; limit the number of people on the screen.

4. Ethical and welfare: describes aspects such as the welfare of public contributors (people with dementia and caregivers), digital exclusion, impact on social communication, data security, etc.
   Improvements: consider the configuration and history of the group when choosing which platform and approach (online, face-to-face or blended) to use; follow-up of public contributors’ welfare

Guidance

Dementia associations’ websites are an ideal place to provide advance care planning information to a wide public. If information about advance care planning is provided, dementia associations should ensure balanced content. Websites should address not only legal and medical information, but also practical guidance on how to engage in and communicate about advance care planning.

Explanation/examples:

Advance care planning is a process that enables individuals to define goals and preferences for their future care. As people with dementia have a high risk of cognitive decline, advance care planning is important. Many people use the internet to find health information. Some of the most consulted sources to search for specific information about dementia are the websites of dementia associations. We conducted a content analysis of dementia associations’ websites in Europe regarding advance care planning information. We included 26 dementia associations’ websites from 20 countries and one European association, covering 12 languages. Ten websites did not mention advance care planning. The information on the remaining 16 varied in terms of themes addressed and amount of information. Legal and medical themes were prominent, while other key advance care planning themes such as communication with family, communication with health professionals, sharing of decisions and the identification of personal values and life goals seem largely to be under-addressed. This is an important gap, given that the drafting of advance directives should be preceded by a process of communication between the person with dementia, their family and their healthcare providers.

Guidance

End-users should be involved in the development of web-based advance care planning support tools to ensure their usability and usefulness for end-users. Furthermore, the content of web-based advance care planning tools should be substantiated by scientific evidence.

Explanation and Examples:

More and more web-based advance care planning support tools are publicly available on the internet. We conducted a systematic review of web-based interactive advance care planning support tools. We found numerous interactive web-based advance care planning support tools, varying in terms of their characteristics, functionalities, readability, quality of content, and level of evidence. Most tools were not co-developed with end users; were of low or medium quality; and, with a few exceptions, had not been evaluated in research. Tools should be evaluated through usability and effectiveness testing and should be substantiated with the most recent scientific literature.

Guidance

An advance care planning website for people with dementia and their family caregivers should focus on providing information and facilitating communication, provided in a user-friendly manner.

Explanation and Examples:

Advance care planning is a process that enables individuals to define goals and preferences for their future care. Digital interactive tools, such as websites, that encourage reflection, communication and/or documentation, may support this group in the advance care planning process. However, considering the specific needs of people with dementia, it is important to develop tools that are adapted to this population. We conducted focus groups with family caregivers (serving both as potential users and proxies for people with dementia) and healthcare professionals caring for people with dementia, to determine their needs in terms of content of the advance care planning website and how this should be delivered. Some specific recommendations included:

• An advance care planning website should focus on providing advance care planning information, including but not limited to advance directives, and offer guidance on how to start an ACP conversation.
• To increase the accessibility and usability of the ACP website, the inclusion of a text-to-speech option, a print option, and the possibility to increase the font size should be considered.