To our knowledge, this is the first theory-driven examination of patients’ beliefs about a diagnosis of MCI. Beliefs about MCI included both medically accurate information and attitudes or beliefs that may or may not be valid. Participants accurately endorsed many symptoms of MCI that were related to cognitive function and did not endorse somatic symptoms. Yet, they endorsed some cognitive and other symptoms that are not specific to MCI and may indicate misperceptions about the meaning of the diagnosis. Many frequently endorsed causes may also be accurate; included heredity and abnormal brain changes. However, whether normal aging or stress is a causative factor in MCI is not clear. Notably, participants did not believe that MCI produces severe emotional distress. They did believe that MCI would last for a long time, but also that it is predictable and controllable by personal strategies and medical treatment. There were no consistent beliefs, however, regarding the short- and long-term outcomes associated with MCI or whether participant believed that they had a coherent understanding of their diagnosis of MCI.
Certain domains of representations from our findings are worthy of further discussion. No previous study has explored beliefs about the causes of MCI in subjects diagnosed with MCI. Most patients with MCI believed that aging causes the condition. This finding is consistent with other reports indicating that older adults believe memory loss to be an inevitable part of normal aging (Hurt, Burns, Brown, & Barrowclough, 2010
), which is contrary to current scientific opinion (Drachman, 2006
). Our study also found that very few persons attributed MCI to lifestyles factors, such as poor diet, or to certain chronic health conditions (e.g., diabetes, cardiovascular disease), all of which have been suggested as risk factors for MCI (Solfrizzi et al., 2008
). Overall, there appears to be both a lack of information and misperceptions about the diagnosis of MCI. However, because we asked participant about what caused his/her MCI, we were unable to differentiate whether participants recognized lifestyle and medical conditions as general risk factors, as opposed to risk factors for them personally. Future work should examine this distinction.
Our findings differed somewhat from a previous study (McIlvane et al., 2008
) that indicated that people did not believe they were at risk of progression from MCI to Alzheimer's Disease. Participants in this study were generally uncertain whether MCI could progress to dementia, and almost one third believed MCI would progress to dementia. Most participants believed that MCI had a considerable impact on their lives and caused difficulties for their loved ones, but they did not believe that they had lost their independence as a result of MCI. While over half did not report feeling stigmatized, participants were uncertain as to whether MCI affected how others viewed them. These findings suggest that it may be important to discuss patient's perception of the impact of MCI on daily life in order to address patient's fears and/or concerns, but that those diagnosed with MCI may not in general feel embarrassed or hopeless.
Although all of the participants were recruited from memory clinics that educated patients about the diagnosis of MCI, almost half of the participants did not have a clear understanding of their diagnosis. In this study, cognitive deficits, as measured by the MMSE, were generally not related to beliefs, and, in particular, their belief that MCI is understandable. Educational level was related to their perceived understanding of their diagnosis. Further efforts to tailor patient education about MCI to patients’ knowledge and cognitive levels may need to be addressed in clinical practice.
Consistent with previous research (McIlvane et al., 2008
), the patients diagnosed with MCI in this study reported relatively low levels of emotional distress regarding their diagnosis. One possible explanation is that eligibility for this study required participants to be diagnosed with MCI for at least three months, which may have allowed time for emotional adjustment to the diagnosis to occur. Similar adjustment has been reported in patients with life-threatening events, such as breast cancer (Costanzo et al., 2007
). However, a qualitative study (Lingler et al., 2006
) provided another possible explanation. Patients may feel a low level of emotional distress with a diagnosis of MCI because it is not a diagnosis of Alzheimer's disease or other dementia, which they may have feared.
Persons with MCI perceived that MCI is a chronic condition. Interestingly, the perception of chronicity was related to believing that one has little personal control over the illness, worse consequences, and greater emotional distress. This is similar to other research using the IPQ-R to study beliefs about Addison disease, diabetes, hypertension, chronic fatigue syndromes, and Alzheimer's disease (Hagger & Orbell, 2003
). Patients who believe that a health problem is chronic also tend to use a higher level of health care services, regardless of the nature of the health problem (Frostholm et al., 2005
). We did not measure health care utilization in this study, but this suggests that assessing perceptions of chronicity may identify patients who could benefit from education and interventions to build coping strategies and manage emotional distress related to their diagnosis of MCI.
Limitations of the study design should be acknowledged. First, the study included a small clinic-based sample, the majority of whom were White and highly educated. Given that VA patients composed a large part of the sample, most of the participants were male. The results may not be generalizable to the overall MCI population. Second, we did not further categorize participants according to their subtypes of MCI, because of the small number of participants. Third, the IPQ-MCI needs further psychometric validation in a larger, more heterogeneous sample. On the other hand, the results of this study provide evidence that the IPQ-MCI is feasible for use with older adults with MCI. Both the reasonable amount of time spent on completing the questionnaires and the responses to the cognitive interviews suggest that the IPQ-MCI is relatively easy to use. The assistance from care partners in this study was limited to helping with reading items. For studies involving MCI patients without care partners, investigators may wish to consider using an interview format with the interviewer asking and recording answers while providing participants with the set of questionnaires for reference.
The results of this study suggest a number of avenues for future research. First, previous studies have demonstrated that, after controlling for the severity of health problems, illness representations are significant determinants of health related quality of life (Spain, Tubridy, Kilpatrick, Adams, & Holmes, 2007
). In general, people with more symptoms, more chronic timeline, who anticipated worse consequences, and who perceived low control tended to engage in more emotional-focused coping and have worse health outcomes. Future studies should examine whether beliefs about MCI are related to health related quality of life or other domains of mental health. Second, previous qualitative studies reported divergent understandings of MCI among health professionals and caregivers (Frank et al., 2006
; Moreira et al., 2008
). Because these two groups may have a major influence on how patients think about and cope with their MCI, it would be worthwhile to compare their representations of MCI with those of the patient. This may help bridge any potential gap in their beliefs and facilitate communications and shared decision-making among patients, caregivers, and providers in order to provide more patient-centered care. Third, studies clarifying how the general public and people with a family history of cognitive disorders understand MCI are rare (Dale, Hemmerich, Hill, Hougham, & Sachs, 2008
). To systematically compare their representations with those of persons with MCI may help researchers develop strategies to facilitate early detection and diagnosis. Finally, research to develop interventions that can address beliefs that act as barriers to optimal coping and health outcomes is needed. Finally, the Common Sense Model provided a useful framework for organizing and describing peoples’ ‘lay theories’ about their illnesses or health threats and for illuminating the differences between lay theories and medical models of illnesses. As such, it provides many questions that need to be addressed in future research and clinical practice. The theoretical propositions of the CSM; that is, whether beliefs driving coping behaviors and influence health outcomes, were not addressed in this study.
Implications for nursing practice may be premature at this point. However, a number of nursing interventions based on the Common Sense Model (Donovan et al., 2007
) suggest that eliciting and discussing patients’ beliefs can change misconceptions or address gaps in knowledge in ways that improve patients’ quality of life. Nurses working in both memory and primary clinics can utilize such an approach to clarify patients and their families’ potential confusions or gaps related to the diagnosis, such as the course of MCI, and the potential stigma or uncertainty related to the label, which may directly influence patients’ mental well-being. In addition, many of the potential risk factors of MCI, such as smoking, medical factors (e.g., hypertension, diabetes, depression), or diet (e.g., fish consumption), are modifiable factors. Patients’ beliefs about such causes of or risk factors for MCI can directly influence patients’ health related behaviors in response to a diagnosis of MCI and how they prevent or better manage these risk factors. Thus, to provide patients with a clear picture of the risk factors of MCI may help patients engage in the healthy behaviors to prevent the further cognitive decline.