INTRODUCTION

The number of people with mild cognitive impairment and dementia (MCI/dem) is rising rapidly with one new case every three seconds (1). According to a 2012 report by World Health Organization (WHO), 9% of the 35.6 million people with dementia worldwide are below age 65 (2). While the consequences of dementia for older adults have been extensively studied, those who experience MCI/dem before retirement age have not received much attention (3).

Occupations are defined as activities that are purposeful and have a value and meaning to the people doing them (4). Work is an important activity for most adults under 65. It can be therapeutic, promote participation in society, reduce the risk of long-term incapacity, and improve quality of life (5). However, an individual’s need to engage in work and social activity varies over time, and from person to person. Interviews with employed individuals with MCI/dem have shown that some of them preferred to stay in employment with appropriate accommodations or adjustments, while others wanted to leave work and be relieved of their vocational responsibilities (6,7).

Technology can play a part in workplace accommodation but not everyone with MCI/dem is keen on using technological adjustments unless they feel a strong need (8). Furthermore, the effect of technology use for facilitating their everyday occupations is not known (9). Some studies, such as Chaplin & Davidson’s (7) have mentioned examples of self-initiated strategies adopted by people with MCI/dem such as the use of calendars and audio recorders. The possibilities of using these strategies for problem solving has, however, often been neglected in previous studies (10).

In this paper, we pilot a Cognitive Task Analysis- Decision Centered Design (CTA-DCD) model to derive design recommendations for technology development for people with MCI/dem at work. We demonstrate the feasibility of this approach using preliminary data from interviews and a focus group with people with MCI/dem.

METHODS

This research is part of the MCI@Work project (www.mciatwork.org); a trans-Atlantic collaboration that includes the goal of using knowledge from interviews and case studies to create a digital tool to support role planning for people with MCI/dem at work. The data presented in this paper are drawn from semi-structured one-on-one interviews and focus groups. We introduce a human factors approach by using our proposed CTA-DCD model (depicted in Figure 1 and explained in more detail in (11)) to systematically elicit, analyze, and represent data in order to provide key design recommendations for technology creation. We identify macrocognitive activities through the knowledge elicitation process, which are then used to define design recommendations for a tool that could support role planning for people with MCI/dem at work.

CTA studies aim to capture what people know and how they reason, including: what they pay attention to; the strategies they are using to make decisions or detect problems; what they try to accomplish; and what they know about the way a process or system works. CTA methods also help in identifying macrocognitive activities, which are defined as the cognitive processes employed during decision making by people in complex tasks or environments. Macrocognitive activities indicate a level of description of the cognitive functions performed by people in natural decision-making settings. We use this definition to understand the cognitive processes affecting people with MCI/dem as they wrestle with difficult dilemmas, particularly in complex work settings that are often demanding, performed under time pressure, and have unexpected situations. The DCD framework focuses on tough decision making. It uses CTA methods to identify key decisions, and then translates these into decision requirements to guide the design of technology, training, and processes by narrowing down and mapping the broad macrocognitive activities to cognitive support requirements (12).

Knowledge elicitation

Data collection is being conducted through semi-structured one-on-one interviews and focus groups with people living with MCI/dem. Questions have been developed to uncover participants’ self-initiated strategies and to understand the work context by eliciting their recollections of previously experienced difficult situations and challenging events. Our goal is to understand their needs and unmet needs as well as what tools, strategies, and technology work well.

Data analysis and data representation

As we are still in the process of conducting interviews and focus groups, a descriptive data analysis consisting of people’s experience of living with MCI/dem while still employed and the barriers or problems they face at work has been conducted for this paper. The objectives of the data analysis were to identify common self-initiated strategies and artifacts at work and common macrocognitive activities. As seen in Figure 1, the workflow model is a component of the CTA that is used to represent how people get work done from the point of view of the person interviewed. The workflow model depicts the rich pattern of work as it shuttles between people, the interweaving of jobs and job responsibilities that get the work done (13).

RESULTS

Our discussion uses data from five people living with MCI/dem who are currently or were recently employed; three participated in one-on-one interviews and two participated in a focus group. Participant details are described in Table 1 below.

Table1. Participant demographics

Participant ID#	Age	Diagnosis	Occupation	Type of Interview
P1	54	Memory/cognitive deficits	Seasonal worker	One-on-one
P2	57	Memory/cognitive deficits	Training manager	One-on-one
P3	46	Early-onset dementia	City planning manager	One-on-one
P4	65	Early-onset dementia	Support missionary	Focus group
P5	59	Early-onset dementia	Case worker	Focus group

Workflow model

Figure 2 depicts the workflow model populated with some of the data obtained from the interviews and focus group; it is not exhaustive and not intended to represent everything that a person or their organization does. This is a consolidated model that contains information from all participants, the individuals are shown in the central bubble with their work responsibilities. The flow (i.e., arrows in Figure 2) depicts how they get work done, and the artifacts (i.e., tools or things they use) are shown in small boxes on flow and are physical things (e.g., Computer) or conceptual (e.g. work-buddies, discussion/conversation that aids in task completion) may warrant representation as an artifact. Artifacts tell a story about work; they reveal the strategies people use at work. Disconnects or problems faced at work, are represented as black lightning bolts and represent the problems people face in completing tasks at work. Places are shown in big boxes annotated with name of place and responsibilities and represent the places people go in and out of in order to get their work done.

Self-initiated strategies and artifacts used at work

Participants reported different strategies that they used to cope with symptoms or to cope with the extra pressures of the workplace. Examples of these are: Writing notes and memos (P1, P2, P5); making full use of a diary/daybook (P2, P5); using a virtual to-do lists app (P1); using physical to-do lists/sticky notes (P5); using a daily task management app (P5); verbal recalling technique (P2); and having work-buddy to delegate work (P3, P4).

All participants mentioned difficulties with problem solving and not being able to perform daily tasks at work efficiently. For example, performing number calculations (P2); managing team/co-worker's tasks (P3); and not knowing how to start/initiate a task at work (P1, P2, P5); spending more time planning and organizing tasks (P1, P2, P3, P4, P5).

These interviews resulted in five broad macrocognitive activities, derived from the macrocognitive processes and supporting functions: 1) managing attention, 2) mental stimulation and story building, 3) problem-solving, 4) adapting, and 5) task coordination (12).

DISCUSSION AND CONCLUSION

There are currently no digital tools or assistive technology specifically designed to support people with MCI/dem at work. With this study, we introduce a human factors approach that can help to identify what features in a system or technology might better assist people with MCI/dem at work with role planning and achieving key tasks at work. The design of new systems and the modification of existing systems can benefit from a macrocognitive perspective because the design of systems often does not capture the difficult decisions people make, it rather focuses on routine requirements. As a consequence, they do not scale up; namely, they do not assist with difficult decisions made by people with MCI/dem in complex situations, especially when performing under time pressure at work. As a result, a variety of methods have emerged for injecting cognition into the design process (14).

We piloted the CTA-DCD model to systematically elicit the self-initiated strategies, artifacts being used, and understand needs from a macrocognitive perspetive. As shown in the results section, we were able to use the interviews to identify five macrocognitive activities and represent the consolidated flow of work through the workflow model. This includes representing the artifacts used as strategies, understanding the problems people faced at work through disconnects, and the physical spaces people visited to achieve tasks during work. The preliminary data collected, analyzed, and represented exemplifies the value of using a CTA-DCD approach in keeping the macrocognitive activities in the forefront.

With the preliminary data presented in this paper we can start to see how the barriers in context of the work coupled with self-initiated strategies and artifacts will guide the design of technology to better support people with MCI/dem at their workplace with role-planning and task completion. The identified macrocognitive activities will be narrowed and mapped to specific cognitive support requirements through the DCD framework. These decision requirements will then guide the design of technology. With our initial observations, we can see how some artifacts like notes, memos, to-do lists, and task-management apps coupled with barriers in the context of cognitive work like initiating, planning, and organizing tasks can lead to features/functionalities in a digital tool. When interpreting the results of this research we should keep in mind that we are proposing a new model to translate people with MCI/dem’s needs and experiences into design recommendations; as such, it has not been validated through variety of contexts.

All participants mentioned problems with attention, which resulted in feeling overwhelmed and exhausted with work. P1, P3, and P5 mention playing puzzles/cognitive stimulating games at home, and P1 mentions a need for mental stimulation as the work he was doing was not (cognitively) challenging enough. This macrocognitive activity (mental stimulation) helps us characterize inidivual barriers (work not challenging enough). In the context of cognitve work for P1, there are aspects of work that are challenging, example loss of perception of time and space while driving. However, P1 feels that the certain work tasks, such as manual labor, are not  cognitively challenging.

It is also important to note some positive aspects of leaving work such as sense of relief also reported by P5 which is consistent with the literature (15, 6) and a sense of renewed purpose through telling their story of living with dementia have also been reported (15,16).

Next steps of the project involve collecting more data through further interviews with people with MCI/dem as well as employers and co-workers who have experience working with people living with MCI/dem to validate the CTA-DCD through a variety of contexts. These data are expected to result in specific design requirements for co- developing an initial prototype of the digital tool.