Studying the self in people with dementia: How might we proceed?

Abstract

The impact of dementia on the self has become the subject of much research over the last few years, mainly due to the implications for support and care for people with dementia. However, there are a number of limitations of this research that make it difficult to integrate the existing evidence and to draw any firm conclusions regarding the persistence of self. This highlights the need for a different approach to studying the self in people with dementia in order to obtain more robust evidence from future studies. This paper attempts to integrate current research using an existing systematic and comprehensive framework of the self, and outlines the advantages and limitations of using such a framework as the basis for future studies.

Discontinuity in the Subjective Experience of Self Among People with Mild-To-Moderate Dementia Is Associated with Poorer Psychological Health: Findings from the IDEAL Cohort

“…Self and identity are difficult concepts to define precisely, and many different approaches have been taken to their measurement, often reflecting different underlying concepts. Models building on the basic distinction between consciousness (where attention is directed outwards) and self-awareness (where attention is directed inwards) offer potential frameworks for understanding the complex phenomenon of self [ 2 ]. For example, Neisser’s model [ 3 ] proposes five interrelated components of self: ecological, interpersonal, extended, private, and conceptual.…”

Psychosocial Studies of the Individual's Changing Perspectives in Alzheimer's Disease

“…Consequently, the relationship between level of cognitive decline and degree of awareness is not straightforward (Clare, Rowlands, Bruce et al, 2008). Researching this field is complicated; many research designs rely on participants having sensory registration (i.e., a basic concept of their position and relationship to the environment) as this is necessary in order to interact with the researcher and study materials (Caddell & Clare, 2013).…”

“…It can be difficult to tease apart these different types of self because the self is experienced as a single entity (Caddell & Clare, 2013). In research, self-1 (which recognises the self as a unique embodied individual) will be exhibited by many participants even if this is not what is being explicitly tested (Caddell & Clare, 2013). However, self-2 and self-3 can only be examined if participants communicate about these to the researcher.…”

“…This can be done indirectly. For instance, in order to complete many questionnaires it is necessary for participants to have a "private self" that is intact to at least some degree (Caddell & Clare, 2013).…”

Using memories to support the self in Alzheimer's disease

“…Locke, 1694Locke, /1975, one might expect that memory impairment would lead to changes in, if not loss of, the self. Of relevance here is the fact that the term 'self' is multifaceted and has been used to refer to a wide variety of psychological functions and processes (Caddell & Clare, 2011b). For example, Klein (2012) notes that the self is associated with a range of neurocognitive systems, including episodic memories, semantic knowledge of personality traits, semantic facts about one's life, diachronic unity (i.e.…”