Understanding the conceptualisation of risk in the context of community dementia care

Abstract

Risk has become a ubiquitous presence in modern society. For individuals diagnosed with dementia this preoccupation with risk can affect their day-to-day life in many ways. Maintaining autonomy while balancing risks is a continual struggle not only for those living with the disease, but also their carers, family and health professionals. To understand how these different groups of individuals conceptualise the issue of risk for those living with dementia, 83 semi-structured interviews were conducted with people living with dementia, carers, older people without significant experience of dementia, and registered nurses, and staff from a community nursing organisation. These interviews were analysed using Thematic Analysis, which suggested that the risks identified by each group were grounded in their experiences and perspective on dementia. Furthermore, context and understanding of the individual living with dementia and their preferences was central to effectively managing risk in a balanced way, ensuring that 'acceptable risks' were taken to ensure an acceptable quality of life for all involved. These findings highlight that there is no single approach to risk which can be applied to all individuals; rather, a negotiation needs to take place that takes into account the individual's preferences alongside their available resources and means.

Psychosocial Adjustment of In-Home Caregivers of Family Members with Dementia and Parkinson’s Disease: A Comparative Study

“…In addition to how such situations affect the nuclear family (both the caregiver and other members), this research has identified three further variables which influence the adjustment process of family caregivers of people suffering from Parkinson's disease or dementia: employment status, income, and place of residence. is result is in line with studies such as that of Dickins et al [17] on the risk of dementia care. According to the authors, the personal context (cultural and professional) must be taken into account to identify and understand different perspectives and discourses on a social reality such as care.…”

“…Nevertheless, according to the World Health Organization [11]; the measures taken to care for people with neurodegenerative diseases have been insufficient despite this expenditure. For Australia, Dickins et al [17] reported that 75% of people with dementia remain at home. In other cases, it has been estimated that between 60% and 80% of home care is informal [18] and that those with the disease live with their caregivers.…”

“…In response to dementia, the World Health Organization has underlined the need to apply health-in-all-policies and interventions, whole-of-society, and multisectoral approaches [11]. is implies that interventions that seek to be effective and socially accepted must incorporate the cultural, personal, and professional contexts of caregivers and patients [17]. In other words, the actions must be contextualized and sustainable to ensure they have an impact on the well-being and quality of life of the care receivers, while also promoting adequate training and the involvement of professionals [19].…”

Exploring how triads of people living with dementia, carers and health care professionals function in dementia health care: A systematic qualitative review and thematic synthesis

“…Nonetheless, first and foremost professionals felt it necessary to understand and address the carer's expectations of the person living with dementia if these were unduly influential: (Quinn et al, 2013, p. 597) Carers themselves sometimes felt like they had failed if paid care was taken on and some saw professionals as interfering (Bowes & Wilkinson, 2003;Dickins et al, 2018;Gilmour et al, 2003;Maidment et al, 2017;Stephan et al, 2018). From the perspective of the carers, taking over some of their relatives' decisions was seen as part of their 'duty': The role of health care professionals was complex, as for example some GPs felt that their support for the person living with dementia and their family could take on a counselling role (Foley et al, 2017), but there were also comments that disagreed with the idea that there was a therapeutic expectation of the health care professional role (Martin et al, 2013).…”

Differences in Assistive Technology Installed for People With Dementia Living at Home Who Have Wandering and Safety Risks

“…Results indicate a focus on the priorities of caregivers rather than people with dementia. People with dementia identify daily activities and socialising as their priority (46). Focussing on activities which increase participation can increase wellbeing, and reduce anxiety related behaviour such as wandering (22).…”