Recent episodic memory impairment (EMI) affects over 26 million individuals with Alzheimer’s disease. Smart lifelogging technologies can capture a log of the user’s personal experience using wearable or embedded recording devices and present elements of that log as cues that can support memory recollection for people with EMI. In this chapter, the authors describe their design process for developing and evaluating a smart lifelogging system specifically designed to help people with mild EMI remember their experiences better and reduce the burden on their caregivers. The authors’ design process includes two formative field studies to understand both what lifelogging data is most effective for supporting memory and how to present these data. The authors found that their self-guided approach was more effective at supporting people’s ability to retain a detailed memory of their experiences, to feel more confident about their memory abilities, and to reduce the additional burden placed on the caregiver than a caregiver-guided approach.
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We depend on our episodic memory to help us remember our recent experiences. We can remember having a good conversation with a close friend last week and can pick up where the conversation left off. We can remember buying milk and bananas from the market in the morning so we do not have go out and buy them again in the afternoon. We can remember having dinner at a new restaurant and can relive the experience of how delicious the food tasted by simply thinking about it. We can remember spending an evening reading a favorite book in the safety and comfort of our home. Recent episodic memory supports our sense of self (Clare 2003) by enabling us to mentally travel back in time and relive our pleasant experiences and to feel socially and physically engaged in our lives.
Episodic memory impairment (EMI) is the main symptom associated with Alzheimer’s disease, a common neurodegenerative disease that affects over 26 million people worldwide, with this number expected to quadruple by 2050 (Alzheimer’s Association, 2008). Recent episodic memory impairment dramatically changes the lives of individuals with the impairment. Individuals struggle with the need to constantly readjust their own expectations of what they can and can no longer remember. EMI can lead to a loss of autonomy and control in individuals’ lives, resulting in feelings of uncertainty, irritation, and frustration as they attempt to compensate for their memory loss but repeatedly fail. They may withdraw from interacting socially with others to avoid appearing incompetent and as a result may even develop depression (Steeman, DeCasterle, Godderis, & Grypodonck, 2006). They must rely on others for support and often must repetitively ask their family caregivers (such as a spouse or an adult child) for information about current and recent events. The lives of their family caregivers are also dramatically changed as caregivers become overburdened with providing support for both the cognitive and physical needs of their loved one and can themselves develop depression or burnout which can lead to reduced quality of care (Almbert, Grafstrom, & Winblad, 1997). Thus, individuals with EMI and their caregivers struggle to regain a sense of normalcy—how things were before the onset of the disease—in their lives (Butcher, Holkup, & Buckwalter, 2001; Clare 2003). In other words, their ideal situation would be to turn back the clock and live in a time before the disease changed their lives, when their lives were “normal.” Restoring normalcy in their now changed lives involves restoring the memory abilities and independence that the disease took away from them.