Preserved Consciousness in Alzheimer’s Disease and Other Dementias: Caregiver Awareness and Communication Strategies

Abstract

Alzheimer’s disease is an insidious onset neurodegenerative syndrome without effective treatment or cure. It is rapidly becoming a global health crisis that is overwhelming healthcare, society, and individuals. The clinical nature of neurocognitive decline creates significant challenges in bidirectional communication between caregivers and persons with Alzheimer’s disease (AD) that can negatively impact quality-of-life. This paper sought to understand how and to what extent would awareness training about the levels of consciousness in AD influence the quality-of-life interactions in the caregiver-patient dyad. A literature review of multiple databases was conducted utilizing a transdisciplinary approach. The sum of findings indicates a positive relationship between enhanced caregiver awareness and training, positive interactions, and improved QOL measures among patients and caregivers. A multidirectional relationship was found among healthcare policies, training and education resources, caregivers, and persons with AD. Specifically, the current lack of policy and inadequate training and educational resources has various detrimental effects on patients and caregivers, while improvements in training and education of caregivers yields positive outcomes in communication and QOL. Furthermore, evidence of preserved consciousness in persons with AD was demonstrated from multiple disciplines, including neurobiological, psychological, and biopsychosocial models. The literature further revealed several methods to access the preserved consciousness in persons with AD and related dementias, including sensory, emotional, and cognitive stimulations. The evidence from the literature suggests a reframed approach to our understanding and treatment of persons with AD is not only warranted, but crucial to address the needs of those affected by AD.

Decreased beta‐band activity in left supramarginal gyrus reflects cognitive decline: Evidence from a large clinical dataset in patients with dementia

“…To investigate this, we explored the cortical regions which mainly contribute to these changes. In this study, we focused on cognitive impairment associated with dementia because patients with dementia suffer from cognitive impairment with preserved consciousness (Davis, 2004 ; Warren, 2021 ). If changes in consciousness co‐existed, the consciousness‐related changes would bias the cortical activities associated with cognitive impairment: medical conditions such as epileptic seizures and stroke often alter both cognition and the level of consciousness at the same time.…”

The relationship between perceived stigma and perceived stress in cognitive decline: a survey of persons with mild cognitive impairment and their caregivers

“…Notably, even the term "dementia" denotes a removal of the mind from its Latin roots, lending to the depiction that one who is "demented" has suffered a loss of mind and self (Halewood, 2016). On the contrary, evidence supports the existence of retained awareness and implicit memory in persons with dementia (Sabat, 2006;Burgener and Berger, 2008;Warren, 2021). In fact, awareness of persons with dementia persists even into the late stages of the disease, without any association between discrepancy scores (measure of awareness) and Mini-Mental Status Examination (MMSE) scores over time (Clare and Wilson, 2006;Burgener and Berger, 2008).…”

BPSD reconsidered: diagnostic considerations to preserve personhood in persons with dementia

“…A successful recharacterization of BPSD through person-centered, human-rights perspectives must entail a reframing of the dementia narrative, the success of which necessitates improved education on several levels. Persons with dementia are often viewed principally by their incapabilities, rather than their preserved functions (Warren, 2021 ).…”