Dementia and risk: contested territories of everyday life

Abstract

( 2 0 1 0 ) Journal of Nursing and Healthcare of Chronic Illness 2, 102-112 Dementia and risk: contested territories of everyday life Aims. The project aimed to understand the construction of risk in dementia care from the perspective of the person with dementia, family carers and practitioners with the intention of developing negotiated partnerships in risk management. Background. This paper addresses a gap in the literature by embedding constructions of risk within everyday events and social contexts, and communicates such constructions through the voices of people with dementia, carers and practitioners. Method. This symbolic interactionalist study involved data collection by interview with 55 people with dementia (sometimes twice), and their nominated carer and practitioner. The sample was drawn from three regions of the United Kingdom. Data were collected during 2004. Conclusions. Five 'contested territories' of everyday living with dementia are outlined in this paper: friendships, smoking, going out, domestic arrangements, and occupation and activity. These contested territories are purposeful and allow for 102Ó 2010 Blackwell Publishing Ltd sense making, maintenance of self, claiming and relinquishing decision making, and creating purpose(lessness) in people's lives. Relevance to clinical practice. Assessing and managing risk in a way that respects the dynamics and purposes of contested territories will support care that is person centred, and moreover respectful of the relationships that contribute to maintaining the individual's sense of self and purpose.Key words: carer, contested territories, dementia, everyday life, risk, symbolic interactionism IntroductionThe paper addresses the complex area of risk management in dementia care. It described a qualitative study in which 55 people with dementia were interviewed, together with their nominated family member and carer. The findings demonstrate the everyday ways in which people with dementia experience risk and its impact on their sense-making, and their identity, purpose and control over their lives. As such, the paper contributes to a growing awareness of the critical importance of the ways in which the micro-dynamics of people's lives are affected by others and it offers a way of intervening to support the identity of the person with dementia.

From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences

“…35 Box 1 provides brief details of the areas included in the topic guide. Terms such as 'memory problems' were used initially when talking to participants, unless or until participants themselves brought up terms such as 'dementia', 'Alzheimer's', or 'cognitive impairment'.…”

Reframing risk management in dementia care through collaborative learning

“…However, these are not necessarily consistent with the preferred approach to the person with dementia. The contested nature of risk decisions was identified in another part of the overall study and is reported in Clarke et al. (2010).…”

Editorial: risk and long‐term conditions – society, services and resilience

“…2010). Risk expertise and its contested nature leading to ever‐changing locations of responsibility in living with dementia (Clarke et al. 2010) and in relation to models of service provision (Wolber & Ward 2010).…”

“…It is just as important, however, to focus not just on what actions an individual may take to enhance resilience but to address the ways in which our society and health and social care structures contribute to diminishing people’s resilience and the steps that can be taken to mitigate these. This may include attending to interpersonal power dynamics (as described by Clarke et al. 2010), ways in which services are structured to allow for a sustained relationship with patients (as described by Wolber & Ward 2010) and societal values and structures (leading in some cases to a devaluing of personal experiences and expertise as described by Macaden & Clarke 2010).…”

“…The counter‐narratives of assumed ‘tragic’ events such as diagnosis with a chronic illness, disability or the knowledge of a ‘genetic time‐bomb’ are evident in the many studies that have shown how individuals themselves can integrate such events into their personal life‐story and are not necessarily overwhelmed by their situations. We can see ideas of hope and recovery penetrating through the assumptions of life‐as‐tragic: in relation to people’s response to a family history of coronary heart disease (Lindsay 2010) and managing life with a dementia (Clarke et al. 2010).…”