Disease Awareness, Cognitive Decline, and Communication in Persons with Mild Cognitive Impairment and Caregivers

Disease Awareness, Cognitive Decline, and Communication in Persons with Mild Cognitive Impairment and Caregivers

Yvonne Yueh-Feng Lu (Indiana University, USA) and Mary Guerriero Austrom (Indiana University, USA)
DOI: 10.4018/978-1-4666-8478-2.ch011


The purpose of this chapter, which is based on our pilot research, is four-fold: 1) to describe the awareness of persons with mild cognitive impairment (PwMCI) of their cognitive changes and meaning of the diagnosis, and their family caregivers' perceptions of the same; 2) to identify PwMCI's concerns about living with MCI; 3) to discuss PwMCI and caregiver perceptions of a patient- and family-centered daily enhancement of meaningful activity (DEMA) program; and 4) to describe the potential benefits of DEMA using case examples. Discussion is based on findings from interviews with PwMCI and family caregivers designed to explore awareness of cognitive changes and the diagnosis, as well as experiences living with MCI. In addition, results from three focus groups to assess content validity and acceptability of the program and from a pilot intervention study to evaluate the feasibility and acceptability of the program contributed to the discussion. Findings support further testing of DEMA in larger and more diverse samples.
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The symptoms of MCI overlap significantly with those of early Alzheimer disease (AD) (McKhann et al., 2001; Morris, 2012). After cancer, AD is the second most feared disease among American adults, and the majority (62%) of Americans feel unprepared to care for a loved one diagnosed with AD (MetLife Foundation 2011). To date, no pharmacological agent is approved by the US Food and Drug Administration for treating MCI or AD. Persons with MCI (PwMCI) live with prognostic uncertainty and often experience a sense of doubt and powerlessness that may affect the ultimate outcomes of their cognitive trajectory (Austrom & Lu, 2009; Roberts, Clare, & Woods, 2009).

PwMCI are at high risk for decreased physical function (Okonkwo, Waldley, Griffith, Ball, & Marson, 2006; Wadley et al., 2009), emotional distress, depressive symptoms (Laketsos et al., 2002), falls (Boripuntakul, 2014; Delbaere et al., 2012; Montero-Odasso, Muir, & Speechley, 2012), and mortality (Yaffe, Petersen, Lindquist, Kramer, & Miller, 2006). They also experience many difficulties that affect their quality of life, including significant conflicts in dyadic communication and reduced functional performance (Bàrrios et al., 2013; Ready, Ott, & Grace, 2004; Teng, Tassniyom, & Lu, 2012; Wadley et al., 2009). MCI involves functional decline that may include decrements in engagement in meaningful activities and sense of mastery (Blieszner, Roberto, Wilcox, Barham, & Winston, 2007), and it is associated with depressive symptoms (Apostolova & Cummings, 2008; Panza et al., 2010). Research findings have shown that caregivers of persons with AD are relatively much more likely to become ill and to die earlier (Schulz et al., 2004). Providing early non-pharmacological interventions during this valuable window of time offers an opportunity to prepare PwMCI and their family caregivers for the future and for coping with the inevitable changes and possible behavioral disturbances over time.

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