Staff experiences of caring for people with dementia who are distressed

Introduction: Research has indicated that distressed behaviours (such as calling out, refusal of medication and personal care) are prevalent in people living with dementia on acute hospital wards. Whilst the different approaches to managing distressed behaviours within general health hospitals are well-documented, there is a limited amount of research which has investigated staff experiences of providing care within this context, particularly in relation to coping styles and how staff understand the behaviours of the person living with dementia. The current study therefore aimed to explore ward staff experiences of distressed behaviours for people living with dementia in an acute hospital setting. Method: A qualitative methodology was adopted in which nine ward staff working in an acute hospital setting were interviewed using a semi-structured interview format. Staff were invited to talk about their experiences of providing care to patients with living dementia who were displaying distressed behaviours. Each participants’ transcribed interviews were then analysed using Thematic Analysis. Results: Four key themes emerged from the participants experiences of providing care to people living with dementia in an acute hospital setting. These themes were: ‘How I understand the behaviours of the person living with dementia’, ‘The context in which I undertake this work’, ‘The emotional load’ and ‘What I do to manage’ when supporting distressed behaviour. A further 15 subthemes were identified under these headings. Multiple factors shaped responses to distressed behaviour. Participants spoke about the importance of familiarity when providing care to people living with dementia and ways in which they try to achieve this whilst working in a fast-paced acute hospital setting with short lengths of stay. Participants spoke about the ward context and the difficulties this created in providing person-centred care that is responsive to the needs of people who are distressed. Importantly, participants highlighted the significant emotional impact of providing care to people living with dementia who are distressed and outlined coping strategies they utilise to overcome the emotional component of this work. Of particular interest was the reluctance of staff to disclose the extent of this emotional load with colleagues or managers. Instead, staff referred to hiding the emotional impact (for example, crying in the toilets or at home). Discussion: The study highlighted that the emotional load of providing care to people living with dementia who are distressed is unlikely to be fully recognised or supported by colleagues and management because this is rarely shared or spoken about by ward staff. Further, the study demonstrated the emotional and practical ways ward staff cope with, and support people who are distressed, as well as the ways in which ward staff interpret and respond to distressed behaviours. Distressed behaviours appeared to be interpreted in part due to modifiable beliefs shaped by perceptions of dementia and were not always helpful. This has implications for future training and support provided by the organisation