Approaches Matter
Linking practitioner approaches to technology design for people with dementia.
Technologies are increasingly being introduced to engage people with dementia in meaningful activities. However, these technologies are often not designed for active use by people with dementia — they are usually designed for passive engagement by the person with the condition, such as monitoring location via GPS. Given that active engagement has many benefits for people with dementia, there is a need for an understanding of how to design technologies for this purpose.
Given how little we know about supporting active engagement for people with dementia, our team at University of Maryland turned to experienced practitioners who focus their work on meaningful engagement of people with dementia in activities. We interviewed nineteen practitioners who worked in settings, from in-home consulting to skilled nursing facilities. Practitioners worked in a variety of roles, such as occupational therapists, activities directors, and speech language pathology.
We learned of different and often clashing approaches used to engage people with dementia in activities. In our work, we draw a link between these approaches to meaningful engagement and the ways practitioners make sense of the actions of people with dementia. Understanding these different perspectives is important for technology designers, as equally established approaches in working with people with dementia can lead to very different technological futures.
First, practitioners had two different tactics when people with dementia have a hard time communicating verbally, which often occurs as individuals progress to a certain stage of dementia. The first tactic included attributing the actions of their client to the disease, using labeling such as Behaviors and Psychological Symptoms of Dementia (BPSD). When actions are labeled as BPSD and seen as negative side effects of dementia, redirection is utilized as a strategy to engage people with dementia. For example, when someone is assumed to be wandering, then practitioners will give them a magazine to distract them from their wandering.
A different tactic did not see walking around or crying as attributes of a disease — instead, these were seen as indicators of unmet needs. With this tactic, when people with dementia were expressing negative emotions, practitioners looked to find and address the cause of their clients actions. For example, one client would daily cry out after lunch that she wanted to go home. This practitioner learned her client lived her entire life in a multi-generational home, where after lunch the family would all spend time together. This practitioner took the time to understand the underlying need her client was trying to express when crying to go home. She then met this need through social gatherings after lunch.
Interestingly, many practitioners reported using both the tactic of labeling an action as BPSD or looking for deeper meaning. The change in strategy was often dependent on the stage of dementia their client was in, changing disciplinary practices, time pressure, or as a way to emotionally distance themselves from the situation.
Tracing this to technology futures, a sensor based monitoring system could be used to track the person with dementia’s agitation levels either to distract them or to correlate these expressions with earlier events to see why someone is agitated. Depending on one’s perspective of dementia this same technology could be designed for very different purposes.
We found another set of clashing perspectives in terms of how practitioners design meaningful activities. They described either focusing on pragmatic or respect based engagement. With pragmatic engagement, practitioners would use whatever strategy they could to engage with their client. This often included using the same strategies, words and tools they would use when engaging with a child. Also with the pragmatic engagement practitioners focused on facilitating the feeling of being independent and helpful without the client actually being independent. For example, setting aside a basket of towels that will never be used for a client to fold everyday. This allows the client to believe they are assisting with this daily chore and being helpful, as the feeling of helping was seen as more important than the outcome of their actions.
In contrast, with the respect approach, practitioners would always put the dignity of their client first. With this approach to activities, practitioners described never using crayons or childrens’ games. And, rather than satisfying a client’s urge to contribute to society by setting up an activity that merely appeared to help others, practitioners with this approach focused on engaging their clients in activities such as making stuffed animals for children in the hospital. With this approach the focus is on assisting their clients in completing activities as independently as possible.
Tracing this to technology futures, a pragmatic virtual reality system for passive engagement of people with dementia would focus on making them feel as though they were cooking independently without actually cooking at all. In contrast, an augmented reality system could be designed to provide assistance and prompts in the kitchen while the person is actually cooking.
Based on these findings we encourage technology designers to identify their own perspectives towards people with dementia, especially when concerning topics such as BPSD, infantilization, respect, and self-actualization. These perspectives will shape the way technologies are designed for and perceived by users with dementia. The table presents a practical way for researchers and designers to reflect on their own understanding of dementia by linking the attributes of technologies to the approaches to care of practitioners. In presenting these options, we stress that all approaches should not be considered as equally appropriate. We join dementia advocates in urging researchers towards perspectives that prioritize dignity and respect and attributing significance to the actions of people with dementia.
If you would like to read more about this work, please check out our CHI 2020 paper:
- Emma Dixon and Amanda Lazar. (2020). Approach Matters: Linking Practitioner Approaches to Technology Design for People with Dementia. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems (CHI ’20). Association for Computing Machinery, New York, NY, USA, 1–15.
