71DEMENTIA INPATIENT STUDY ON THE RECOGNITION AND EVALUATION OF SIGNS SIGNALLING EMOTIONAL DISTRESS - THE DISTRESSED STUDY

Abstract

Dementia is a common comorbidity in older people admitted to general hospital. People with dementia have a high prevalence of psychological symptoms, pain and delirium, which if left untreated can cause distress and predispose the person to worse outcomes. Identifying individual symptoms or the causes of distress can be difficult because people with more severe dementia often struggle to communicate. Systems are in place to help healthcare professionals recognise and treat individual symptoms, but they require the user to be able to apply and use them appropriately. This thesis describes the development and feasibility testing of a novel screening tool, which aims to improve distress recognition for dementia patients in a hospital setting. Initially, to understand areas of unmet need, a retrospective review of 116 case notes of people with dementia admitted to hospital was undertaken. The results suggested a discrepancy between observed and expected psychological symptoms, delirium, and pain, and that existing systems used to identify and manage them were underutilised. It was hypothesised that encouraging healthcare professionals to identify distress, rather than specific symptoms, may be a simple and sensitive method for improving the recognition of psychological symptoms, pain and delirium downstream. However, how hospital healthcare professionals identify distress in dementia patients was previously undescribed. Existing methods were explored using thematic analysis of 25 semi-structured interviews with healthcare professionals who regularly care for people with dementia. The participants interviewed all believed they could innately identify distress. However, common facilitators and barriers to this process were identified including: how the patient presents, familiarity with the patient, using the person’s usual community carer as a source of information, staff training, ward culture, and competing ward priorities. Following a series of design phases, the themes generated were combined with existing theories on implementing healthcare interventions to develop a novel distress screening tool, for use by healthcare professionals to assess dementia patients in a hospital setting. The Distress Recognition Tool (DRT), was deliberately simple and designed to complement existing hospital physical observation systems. As part of the assessment, community carers for the person with dementia are also asked to contribute to the process when visiting the ward. The DRT was further refined using feedback from focus groups comprising healthcare professionals and community carers of people with dementia. To test the use, usefulness and potential mechanistic impacts of the DRT, the tool was feasibility tested during the routine care of 32 consented patients with dementia admitted to a large teaching hospital. All staff on participating wards received DRT training and consequently the tool was used on average 0.9 times per participant day. Carers contributed to the assessment process on average 0.4 times per patient day. The feedback from healthcare professionals and community carers was positive but highlighted that more complex aspects of the DRT need refinement.