Best Practice Guidance
Human Interaction with Technology in Dementia

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.

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

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

See recommendation no. 3.1.4.1

Guidance

See recommendation no. 3.1.4.2

Guidance

See recommendation no. 3.1.4.2

Guidance

Internet training programmes for family carers have potential to increase carers’ well-being, to reduce distress, depression and anxiety symptoms and to increase knowledge skills.

Explanation and example

A systematic review (Egan et al. 2018) about online training programmes for family carers reported on two studies in which improvements in depression symptoms were demonstrated, two studies with overall improvements in anxiety and two studies showing reduction of stress symptoms. Good examples of informative websites and internet training programmes for family carers are ‘Mastery over Dementia’, iSupport, ‘iCARE: Stress management eTraining programme’ and the STAR E-Learning course.

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

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