Understanding illness awareness in Alzheimer's disease: a qualitative study with patient-caregiver dyads in Colombia

Diminished awareness of illness is a frequent neuropsychiatric symptom in people with Alzheimer's disease. It has been linked to emotional and behavioral challenges such as depression, apathy, irritability, and poor adaptation to loss of function. Despite its clinical importance, little is known about how individuals and their caregivers understand and experience illness awareness, particularly in low- and middle-income countries.

To explore the meaning of illness awareness and the factors associated with its impairment, as experienced and described by people living with Alzheimer's disease and their caregivers in Medellín, Colombia.

Semi-structured interviews were conducted with 20 individuals diagnosed with major neurocognitive disorder due to Alzheimer's disease and 24 caregivers. A grounded theory approach guided data collection and analysis, allowing for an inductive exploration of shared meanings and contextual influences.

For these patient-caregiver dyads, being aware of illness meant recognizing cognitive, emotional, and behavioral changes linked to the neurodegenerative process. Awareness and its disruption were shaped by personal characteristics (such as personality and emotional resilience), prior life experiences, socioeconomic conditions, and the quality of social support. Caregivers who felt emotionally supported and well-informed about the disease were better equipped to support changes in awareness in the person with dementia without increasing distress.

Understanding the cultural and interpersonal dimensions of illness awareness offers critical insights for the design of interventions that address absence of awareness with sensitivity and compassion. Recognizing how awareness is formed, preserved, or lost can inform more person-centered approaches to care.