Best Practice Guidance
Human Interaction with Technology in Dementia

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.

Guidance

Consider active engagement of nursing home management as a crucial component when designing complex health care technologies for nursing homes. Their commitment to the project’s success will help to ensure staff have sufficient time and other resources to participate in the new programme.

Explanation

A lack of time is one of the most important barriers for implementing advance care planning (ACP) in nursing homes. Therefore, it is crucial staff gets enough time to engage and work with the intervention in order to properly implement it. When staff is given time to spend on intervention-related tasks, instead of having to spend this time on other tasks, this will increase their ownership of the intervention.

Example

In the ACP⁺ programme all nursing home managers signed a contract stating they would allow their staff to spend time on the intervention. Training sessions were held during working hours and staff got paid while attending these sessions.