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The dance of communication: retaining family membership despite severe non-speech dementia
- Authors:
- WALMSLEY Bruce D., McCORMACK Lynne
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 13(5), 2014, pp.626-641.
- Publisher:
- Sage
There is minimal research investigating non-speech communication as a result of living with severe dementia. This phenomenological study explores retained awareness expressed through non-speech patterns of communication in a family member living with severe dementia. Further, it describes reciprocal efforts used by all family members to engage in alternative patterns of communication. Family interactions were filmed to observe speech and non-speech relational communication. Participants were four family groups each with a family member living with non-speech communication as a result of severe dementia. Overall there were 16 participants. Data were analysed using thematic analysis. One superordinate theme, Dance of Communication, describes the interactive patterns that were observed during family communication. Two subordinate themes emerged: (a) in-step; characterised by communication that indicated harmony, spontaneity and reciprocity, and; (b) out-of-step; characterised by communication that indicated disharmony, syncopation, and vulnerability. This study highlights that retained awareness can exist at levels previously unrecognised in those living with limited or absent speech as a result of severe dementia. A recommendation for the development of a communication programme for caregivers of individuals living with dementia is presented. (Edited publisher abstract)
Shame, hope, intimacy and growth: dementia distress and growth in families from the perspective of senior aged care professionals
- Authors:
- WALMSLEY Bruce D., McCORMACK Lynne
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 15(6), 2016, pp.1666-1684.
- Publisher:
- Sage
Minimal research explores the impact of dementia and a dementia diagnosis on families from the unique vantage of senior health professionals. The participants of this study, eight senior aged care professionals, provided unique interpretative insights into family dynamics and sense-making on the journey with dementia, and their own role in that journey. Both positive and negative perspectives were sought. Data from semi-structured interviews were analysed using Interpretative Phenomenological Analysis (IPA). One superordinate theme, Dementia naiveté; redefined intimacy, overarched Embarrassed shame; Maintaining hope; Redefining a model of intimacy; and Redefined relational intimacy and growth. Within these themes, the participants shed light on hurtful embarrassment and shame experienced by families associated with the diagnostic label given to a loved one. This label was perceived to either trigger separation, hurt and immobility through ignorance, or precipitate a frenzy of naive yet hopeful energy for seeking that elusive cure. The participants saw their role as one of enacting a new way of connecting what was with what could be. Thus, they modelled advocacy, integral care and relational intimacy. Validation came in witnessing a redefining of intimacy in many families who were able to embrace that holistic and empathic approach to the shifting presentation of dementia. Psychological well-being was observed to occur when families embraced growthful domains, e.g. acceptance, hope, relational closeness and altruistic concern for other families. Implications for future care models are discussed. (Publisher abstract)