Background: Impaired awareness of one’s own functioning is highly common in people with Korsakoff’s syndrome (KS). However, it is currently unclear how awareness relates to impairments in daily functioning and quality of life (QoL). Methods: We assessed how impaired awareness relates to cognitive, behavioral, physical, and social functioning and QoL by applying a network analysis. We used cross-sectional data from 215 patients with KS or other severe alcohol-related cognitive deficits living in Dutch long-term care facilities (LTCFs). Results: Apathy has the most central position in the network. Higher apathy scores relate positively to reduced cognition and to a greater decline in activities of daily living and negatively to social participation and the use of antipsychotic drugs. Impaired awareness is also a central node. It is positively related to a higher perceived QoL, reduced cognition and apathy, and negatively to social participation and length of stay in the LTCF. Mediated through apathy and social participation, impaired awareness is indirectly related to other neuropsychiatric symptoms. Conclusions: Impaired awareness is closely related to other domains of daily functioning and QoL of people with KS or other severe alcohol-related cognitive deficits living in LTCFs. Apathy plays a central role. Network analysis offers interesting insights to evaluate the interconnection of different symptoms and impairments in brain disorders such as KS.

Purpose: Worldwide, an increasing number of people are diagnosed with atypical Parkinsonism or idiopathic Parkinson’s disease (PD). Periods of acute functional decline, triggered by acute disease, are common. Rehabilitation is often necessary to restore functioning. Skilled nursing facilities (SNFs) in the Netherlands have developed evidence-based geriatric rehabilitation for Parkinson (GR-P) programs. However, data on the experiences and needs of patients and their caregivers are lacking. This study aims to address these, in order to propose recommendations for improvement. Methods: We performed a qualitative study, using semi-structured interviews in two Dutch SNFs offering GR-P. Nine patients with PD and six informal caregivers were included. We subjected verbatim transcripts of 15 interviews to qualitative analysis. Results: Data saturation was reached after 15 interviews. Three overarching themes emerged: (1) autonomy, (2) sharing information and (3) contact with others. Loss of autonomy was linked to the underlying disease and the rehabilitation environment itself. Patients and caregivers felt overwhelmed by events before and during rehabilitation, expressing a need to receive information and discuss prior experiences. They considered communication between hospitals and SNFs to be poor. Patients did not always appreciate contact with peers. Both patients and caregivers appreciated empathic healthcare personnel with a firm knowledge on PD. Conclusions: Autonomy, sharing information and contact with others are central themes for patients and caregivers during GR-P in SNFs. We recommend actively exploring these three central themes with every patient and caregiver entering a GR-P program and offering staff continuing education on PD, in order to improve care.

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.

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. 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. 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. 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.