Best Practice Guidance
Human Interaction with Technology in Dementia

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

To provide informal caregivers of people with dementia living in remote areas with alternative support services, e-learning interventions can overcome some constraints of in-person services, such as costs and transport to the venues, and might increase the reach of services. However, these e-learning interventions should follow a set of recommendations tailored to the rural context in order to be effective.

Explanation and Examples:

E-learning interventions have proven effective in helping caregivers of people living with dementia, with benefits in terms of knowledge about dementia and social and emotional support. The most effective interventions are those with multiple psychotherapeutic components, such as Cognitive Behavioural Therapy and relaxation exercises, educational resources, online peer support groups, and interaction with healthcare professionals.

However, for these interventions to be successful in a specific context, such as that of rural populations, a process of cultural adaptation, co-design and implementation is needed. For example, some of the concerns expressed by the focus groups in our qualitative study into the adaptive implementation of an online support programme for caregivers, iSupport-Spanish version, concerned the local availability of technological devices or internet access in rural areas. Some recommendations that resulted from the process of co-design and cultural adaptation were:

1. make the platforms accessible through a personal link instead of a username and password;
2. make the platforms available in public spaces for those without access to Wi-Fi or technological devices, e.g. community libraries, town halls, etc.;
3. use a multiplatform format (e.g., computer, smartphone, tablets);
4. make information available through audio and text (both modalities);
5. include images and videos accompanying the text;
6. offer the possibility to personalized letter size and background colours;
7. avoid technical words (use simple language);
8. offer feedback from healthcare professionals and support groups; and
9. offer the information in slide format.

Support interventions for caregivers, such as the iSupport-Sp (available at https://learning.bluece.eu/), could improve their quality of life and the quality of care, reduce caregiver burden, improve care service delivery, and could help to cope with care responsibilities.

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.