Background & objectives: Impaired awareness is common among people with Alzheimer's disease (AD) and the related disorders Huntington's disease (HD), and Korsakoff's syndrome (KS). Individuals with impaired awareness have an altered perception of their situation or functioning, which may pose challenges for care staff in nursing home settings. Yet, little is known about their experiences with impaired awareness.
Methods: We conducted five focus groups with professional caregivers (N = 28) of nursing home residents with AD, HD and KS about their experiences with impaired awareness (two AD, one HD, one KS and one mixed focus group). Participants were certified nursing assistants, vocationally trained nurses and social workers. Conversations were audio-taped and transcribed verbatim. Data were analyzed using thematic analysis.
Results: We identified three main themes: (1) Manifestations of impaired awareness, including observed expressions of impaired awareness and impact on resident interactions. These manifestations were consistent across all three disease groups. (2) Reflections and emotions on these manifestations (characterized by compassion, astonishment and uncertainty). Impaired awareness increased the overall emotional burden for professional caregivers. Additionally, they sometimes felt uncertain about whether impaired awareness was intentional or disease-related. (3) Dealing with impaired awareness, by balancing between moving along and setting boundaries. Caregivers had difficulties determining the most effective approach to deal with impaired awareness.
Conclusion: Impaired awareness impacts the work of caregivers of residents with AD, HD and KS. Gaining a better understanding of how impaired awareness affects residents' emotions and behavior can contribute to the development of effective care approaches for caregivers.
Keywords: Anosognosia; Dementia; Healthcare professionals; Huntington’s Disease; Korsakoff's Syndrome.
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