Communicating risk in dementia care: Survey of health and social care professionals

Abstract

Supporting people to live at home in line with community care policies requires increasing attention to assessing, communicating and managing risks. There is a challenge in supporting client choices that include risk-taking while demonstrating professional accountability. Risk communication becomes increasingly important with the need to engage clients and families in meaningful shared decision-making. This presents particular challenges in dementia services. This survey of risk communication in dementia care was administered to all health and social care professionals in community dementia services in Northern Ireland: June-September 2016. Of 270 professionals, 70 questionnaires were fully completed, with 55 partial completions. Scores on the Berlin Numeracy Test plus Schwartz items was low-moderate (mean 2.79 out of 7). This study did not find a significant association between numeracy and accurate perceptions of risk likelihoods in practice-based scenarios. Although 86% reported using numeric information in practice (mostly from assessment tools), respondents rarely communicated themselves using numbers. As in other domains, participants' responses were widely variable on numeric estimates of verbal terms for likelihood. In relation to medication side effects, few participants provided responses that were concordant with those in the guidance of the European Union. The risks most commonly encountered in practice were (in rank order): falls, depression, poor personal hygiene, medicines mismanagement, leaving home unsupervised, financial mismanagement, malnutrition, swallowing difficulties, abuse from others, risks to others, home appliance accidents and refusing equipment. Respondents generally overestimated the likelihood of serious harmful events by approximately 10-fold (having a missing person's report filed with the police; having a fall resulting in hospitalisation) and by approximately double (being involved in a car accident; causing a home fire), and with wide variation between respondents. There is potential in icon arrays for communicating risks. Risk literacy among dementia care practitioners needs to be developed.

Autonomy conquers all: a thematic analysis of nurses’ professional judgement encountering resistance to care from home-dwelling persons with dementia

“…Respecting autonomy and assessing health-risk in persons with dementia often appears to be an unsolvable dilemma that the health care professional needs to endure and remain in. Assessing and acting on risks in persons with dementia is challenging and professionals, family and the person with dementia may understand risk differently [ 34 , 42 ]. The value of autonomy is strong [ 43 , 44 ], and nurses in the present study emphasized that they aimed to respect the person’s preferences, even when contrary to what most people would want for themselves.…”

“…They assessed needs within the context of what was possible to achieve without using forced treatment and care, i.e., living under very unsanitary conditions. Previous research has argued that nurses who support persons with dementia who live at home need to increase their attention to how to assess, communicate, and manage risk [ 34 , 42 ], and we add that they need to develop competence in how to balance these assessments with shared decision-making, self-determination, and the understanding of autonomy in persons with dementia. Based on the findings from our study, the nurses’ respect for the person’s preferences were enforced by working within their private homes.…”

Risks as dilemmas for home care staff caring for persons with dementia

“…Previous research (Stevenson et al, 2018;Stevenson & Taylor, 2017;Taylor et al, 2018) has shown that there are a number of risks related to health and well-being for a person with dementia who lives alone; for example, the risk of repeatedly getting lost outside of the home, of causing a fire, or of malnutrition. Based on the findings from this and previous research (Ulmanen & Szebehely, 2015), it is possible to question the policy of ageing in place for persons with dementia with complex care needs and comprehensive requirements for support in everyday life, and who also experience a number of risks in daily living.…”

“…When working in the homes of persons with dementia, home care staff are exposed to situations in which the person with dementia faces risks, for example risks in relation to activities such as cooking, managing money (Gilmour, Gibson, & Campbell, 2003), driving (Hunt, Brown, & Gilman, 2010), or getting lost while walking outside of the home (Robinson et al, 2007). The most common risks reported in the literature are risks to physical safety, such as falls (Muir, Gopaul, & Montero Odasso, 2012; and mismanagement of medication (Douglas, Letts, & Richardson, 2011;Taylor et al, 2018). However, psychosocial risks such as depression, loneliness or abuse from others are also mentioned (Taylor et al, 2018).…”

“…The most common risks reported in the literature are risks to physical safety, such as falls (Muir, Gopaul, & Montero Odasso, 2012; and mismanagement of medication (Douglas, Letts, & Richardson, 2011;Taylor et al, 2018). However, psychosocial risks such as depression, loneliness or abuse from others are also mentioned (Taylor et al, 2018).…”