Objective: Develop a foundation for patient-based assessment that measures the impact of cognitive impairment by quantifying symptom severity and disease impact from the perspective of patients with mild cognitive impairment (MCI) and mild-to-moderate Alzheimer's disease (AD) and their informants. Existing neuropsychological measures have limited sensitivity for detection and measurement of change in MCI and mild AD symptoms and do not address impact from the patient perspective. To address these limitations we sought to identify quantifiable symptoms obtained from patients and informants useful to a comprehensive characterization of MCI and mild-to-moderate AD and to explore the range of memory dysfunction experienced. An additional objective was to assist with refining diagnostic criteria from the perspective of patients with MCI and mild-to-moderate AD and their informants.
Design: Semistructured focus group discussion.
Materials and Methods: Focus groups were conducted in the US and UK with MCI patients (3 groups, n=21), MCI informants (2 groups, n=11), early AD patients (3 groups, n=20), and AD informants (2 groups, n=11). Professional facilitators followed a discussion guide to identify memory symptoms, determine impact of cognitive impairment on higher order activities of daily living, and identify discrepancies between patients and informants.
Results: Memory-related symptoms identified included repetitive questions and anecdotes, problems with navigation (getting lost) and task recall (e.g., why did I come to the kitchen?), increased reliance on cognitive prosthetics (lists and calendars), and impaired verbal expression. Main impacts were frustration with memory problems, anxiety and depressive symptoms caused by uncertainty about disease course, diminished self confidence, fear of embarrassment, and concern about changing family roles due to cognitive impairment. There were marked discrepancies between patients and informants; patients reported less impairment than informants (limited insight or denial); and informants reported increased patient dependence. MCI patients demonstrated greater insight than AD patients about how memory problems present and their impact and expressed more concern about disease progression. MCI patients reported efforts to keep their impairment secret and avoid embarrassment; AD patients were generally less concerned with concealing symptoms. AD informants reported a greater emotional burden but greater level of acceptance than MCI informants. MCI informants expressed a high degree of distress, particularly regarding disease progression.
Conclusions: Clinical identification and measurement of MCI and mild AD is limited by the subtlety of deficits relative to existing neuropsychological instruments. In addition to memory, focus groups identified a range of domains relevant for more sensitive measurement of cognitive impairment including daily functioning, social functioning, and family roles. Existing clinical measurement can be enhanced with patient reported symptom and impact measures. Discrepancies between patients and informants suggest the value of informant data.
Back to S045 From Pharmacotherapy to Phenomenology: New Reports and New Contributions
Back to The Eleventh International Congress