As the majority of people in developed countries will be touched in some way by dementia in the 21st century, current ways of interacting in dementia care may no longer be acceptable. In particular, when people with dementia appear uncommunicative, their retained awareness and ability to interact is often dismissed or overlooked. Facing social isolation and further decline, many languish with unmet needs for human interaction. However, the intimacies of family interaction in dementia care settings point to a brighter future.
Lynne McCormack filmed speech and non-speech relational communication within families that included a member with severe dementia and limited or absent speech. Exploring the phenomenon of retained awareness, the researchers sought to understand the reciprocal efforts used by all family members to engage in alternative patterns of communication.
Interactive patterns revealed ‘in-step’ interactions that stimulated spontaneity and reciprocity and ‘out-of-step’ interactions that heightened frustration and anxiety. Family interactions could be ‘in-step’ and ‘out-of-step’ depending on relatives’ presumptions of awareness, timing of response, perceived interpretation, and what appeared to be pre-existing relational patterns. This study also found that retained awareness may exist at a level previously unrecognised in people with minimal or absent speech as a result of severe dementia. Awareness fluctuated from sensory and perceptual levels to complex movement, goal directed behaviour and self-awareness.
This study recognised the difficulty of interpreting awareness related to individual experience, especially in light of minimal speech. However, interactions and expressions of emotion were considered to represent underlying awareness in light of the observed family interactions. By exploring the lived experience of families, it revealed the efforts and willingness of all family members to retain family membership. As a pilot study, it offered a platform for future studies exploring changes in awareness and communication as individuals move from moderate to severe dementia. Importantly, this study reminds us that people with dementia may be more aware and communicative than first assumed.
For more information about this work please see the following journal article:
Walmsley, B., D., & McCormack, L. (2014). The dance of communication: Retaining family membership despite severe non-speech dementia Dementia, 13 (5), 626-641 DOI: 10.1177/1471301213480359
or contact Dr Lynne McCormack at Lynne.McCormack@newcastle.edu.au