Title: Healthcare Management Trust Marie Curie PhD Studentship: How can we improve the detection and management of distress in people with advanced dementia and communication difficulties who are nearing end of life?
Funder: Marie Curie

Abstract: Ensuring comfort is a fundamental requirement for maintaining the wellbeing of people with advanced dementia. “Discomfort” has been defined as “mental or physical uneasiness”. Although pain involves discomfort, discomfort is not always caused by pain and can be triggered by a multitude of other problems such as hunger, cold or boredom. Pain and discomfort can cause behaviour with challenges including physical or verbal aggression or can lead to the person becoming withdrawn. Whilst it is important to take an in-depth holistic approach to caring for the person with advanced dementia, it is vital that basic needs are attended to before we can achieve higher quality of life goals (this is sometimes known as “Maslow’s hierarchy”). Our previous research has demonstrated how staff and family carers report feeling overwhelmed when trying to improve the comfort of a distressed person with advanced dementia. There is surprisingly little basic research on what the common causes of discomfort are in people with advanced dementia and how this is currently managed. Methods To maximise learning and skills development this will be a mixed methods PhD following the usual requirements for PhD studies at University College London. The outline below is flexible; within this overall theme the student will be encouraged to develop their own lines of thinking and investigation. Stage 1 Objective: To develop a theoretical and practical model of wellbeing and comfort in advanced dementia to underpin and inform the PhD project and expand the knowledge base of this area The student will conduct a narrative synthesis review drawing on the pain, palliative care, gerontology, care, and disability literature seeking models for these concepts and examine which may be the most valid, useful and applicable in advanced dementia. They will be supported in this work by Dr Bridget Candy (specialist systematic reviewer in the department). Stage 2 Objective: To identify what the most common sources of discomfort are and compare two distinct approaches to identifying discomfort in people with advanced dementia The student will, informed by the systematic review conducted in stage 1, conduct an observational, cross sectional cohort study of people with advanced dementia. They will be able to choose a setting in which to base the research. We would be happy to work with HMT and develop research culture in their care homes if they would like to do this. They will measure sources and severity of discomfort including the Sources of Discomfort Scale (SODS), Symptom Management-End of Life in dementia (SMEOLD) and Pain Assessment In Advanced Dementia scale (PAINAD). The student will measure distress using two distinct methods 1) the generic Discomfort Scale-Dementia Alzheimer Type (DS-DAT) and 2) the Disability Distress Assessment Tool (DisDat) which uses a “personalised model” which relies on background knowledge of the person with advanced dementia and their specific indicators and signs of distress. They will examine the feasibility and validity strengths and weaknesses these two approaches. This quantitative approach will be complemented by qualitative interviews with staff and family carers of people with advanced dementia. This will expand upon and deepen the understanding developed through quantitative work on how they detect and manage distress. Outcomes 1. A new framework of how the literature conceptualises comfort and distress in people with advanced dementia 2. Evidence on the most common sources of discomfort in people with advanced dementia 3. A clear understanding of the best method to detect discomfort in people with advanced dementia 4. An understanding of how staff and family carer’s currently identify and manage discomfort 5. The above will directly inform the Marie Curie Palliative Care Research Department’s work to develop a new intervention to improve comfort in people with advanced dementia.


Research activity codes: 7.2 END OF LIFE CARE
Health categories: NEUROLOGICAL