Deep Assessment: A Novel Framework for Improving the Care of People with Very Advanced Alzheimer’s Disease

Abstract

Best practice in understanding and caring for people with advanced Alzheimer's disease presents extraordinary challenges. Their severe and deteriorating cognitive impairments are such that carers find progressive difficulty in authentically ascertaining and responding to interests, preferences, and needs. Deep assessment, a novel multifaceted framework drawn from research into the experiences of others with severe cognitive impairments, has potential to empower carers and other support professionals to develop an enhanced understanding of people with advanced Alzheimer's disease and so deliver better calibrated care in attempts to maximize quality of life. Deep assessment uses a combination of techniques, namely, Behaviour State Observation, Triangulated Proxy Reporting, and Startle Reflex Modulation Measurement, to deliver a comprehensive and deep assessment of the inner states (awareness, preferences, likes, and dislikes) of people who cannot reliably self-report. This paper explains deep assessment and its current applications. It then suggests how it can be applied to people with advanced Alzheimer's disease to develop others' understanding of their inner states and to help improve their quality of life. An illustrative hypothetical vignette is used to amplify this framework. We discuss the potential utility and efficacy of this technique for this population and we also propose other human conditions that may benefit from research using a deep assessment approach.

Wearable Technology for Detecting Significant Moments in Individuals with Dementia

“…We demonstrate that this wearable technology is able to accurately track significant moments associated with both physical and emotional events. Such a technology has the potential to accompany frameworks such as deep assessment [11] to improve care for people with advance dementia and to support the quality of life and care decisions of professional and more distal carers. Physiological markers of “significance” or meaning can support the understanding of what matters to persons with dementia, which is now core to health policy [28].…”

“…By synchronizing the moments detected by physiological changes with 30-second video clips, our IAT enables individuals with dementia and their caregiver to focus on the transient events that are meaningful during an activity or an interaction, as opposed to their general baseline state. As such, our IAT advances the capabilities of existing technologies by highlighting events that signify what matters to an individual with dementia [11].…”

“…Understanding the subjective emotional and mental experience of an individual with dementia has important implications for the quality of life of these individuals and their caregivers (familial and professional). Insight into the significant events for individuals with dementia can make visible what is meaningful to them [10] and can, thus, empower caregivers to understand and ameliorate care decisions based on what matters to them [11], as well as intervene before a minor annoyance or frustration can build into an outburst or an aggressive behavior. Moreover, the communication of meaning and important moments is critical to maintaining a sense of connection and thus to preserving relationships between individuals with dementia and their caregivers [12].…”

Research Progress in the Study of Startle Reflex to Disease States

“…Startle Reflex Modulation Measurement can be used to objectively assess indicators in patients with Alzheimer’s disease, which is considered the only objective physiological measure of emotion that is sensitive to emotional valence. 51 For patients with Alzheimer’s disease, especially those in the advanced stage, it is almost impossible to participate in daily living activities through accurate verbal expression and physical behavior. Using the startle reflex can summarize their emotional responses to various stimuli.…”

The Development and Feasibility Study of a Multimodal ‘Talking Wall’ to Facilitate the Voice of Young People with Autism and Complex Needs: A Case Study in a Specialist Residential School

“…It is also noteworthy that Hill et al ( 2016 ) used a ‘framework’ approach by using an observation method based on a novel adaptation of the criterion referenced SCERTS framework (Social Communication, Emotional Regulation and Transactional Support; Prizant et al 2006 ). This approach was supplemented by unprompted ethnographic observation notes to provide a rich narrative (see also Doak 2019 ; Lyons et al 2015 ). Hill et al ( 2016 ) commented that this framework helped to identify patterns of communication for those children with the highest needs, concluding that some communication partners were better at facilitating the young person’s active participation.…”