Unraveling impaired awareness: experiences of people with dementia, Huntington’s disease and Korsakoff’s syndrome, and their informal caregivers

Abstract Background Impaired awareness occurs in people with dementia (DEM; Alzheimer’s disease (AD), including mixed AD/vascular), Huntington’s disease (HD) and Korsakoff’s syndrome (KS). We explored the experiences of these people and their informal caregivers, to gain a better understanding of this phenomenon. Methods We conducted 28 in-depth, semi-structured interviews with 14 dyads, consisting of people with DEM, HD, or KS who had impaired awareness, and their informal caregivers. Topics discussed included impaired awareness of diagnosis and functioning, as well as the consequences of impaired awareness. We applied inductive thematic content analysis. Results We identified four interconnected themes: (1) how impaired awareness is expressed by people with DEM, HD, or KS; (2) how caregivers perceive impaired awareness; (3) how caregivers respond to it; and (4) its consequences. These themes applied to four domains of awareness (diagnosis, physical and cognitive functioning, social and behavioral functioning, and risks in daily activities). Generally, people with DEM, HD or KS experienced no problems arising from impaired awareness, whereas caregivers described substantial challenges. Despite heterogeneity within individuals and domains of functioning, we observed no experiences specific to any disease group (DEM, HD or KS). Conclusions Our findings offer insight into the diverging experiences of people with impaired awareness and their caregivers. Education about impaired awareness and managing its consequences may benefit caregivers and improve care.