A significant aspect of EMBED-Care is to develop the futre generation of researchers in this field. EMBED-Care has five full and part-time PhD students whose work contributes to the wider aims of the programme. A summary of each PhD is provided below. 

Student working
Understanding palliative care needs for people with frontotemporal lobar degeneration (FTLD)

This PhD is being undertaken as part of the ‘Empowering Better End of Life Dementia Care (EMBED-Care) Programme and focuses on investigating unmet needs of those with young onset dementias (YOD).  YOD are rare dementias with onset at the age of 65 years old or below. People with YOD are known to experience many different symptoms towards End of Life (EoL), yet there has been little research on the palliative care needs of those with YOD.

The focus is on Frontotemporal Lobar Degeneration (FTLD) which is a common type of YOD and ‘total pain’ which is a term used to characterize the multi-dimensional nature of pain including physical, psychological, social and spiritual aspects of pain. The aim is to identify the prevalence of symptoms in people with FTLD which may contribute to ‘total pain’ and identify how this may impact on Quality of Life (QoL).

PhD Student: Ali-Rose Sisk

An exploration of unmet palliative care needs and experiences of grief in family carers of people with dementia 

This PhD aims to explore unmet needs and experience of grief pre and post death in family carers. It will build on the findings from the Experiencing Loss and Planning Ahead Study (ELPAS, CI, Dr Kirsten Moore) which found that the majority of carers were experiencing grief. This will involve carrying out quantitative assessments and qualitative interviews with family carers over a 12 month period. Furthering understanding of unmet palliative care needs will help guide interventions that address these needs and support management of grief. 

PhD Student: Sophie Crawley

Understanding the experiences and needs of carers of people with dementia during transition to acute settings, and developing an intervention to improve communication and shared decision-making between carers and care professionals

The initial aim of this PhD is to explore strategies surrounding successful implementation of digitalnon-pharmacological interventions in dementia care. Subsequentlyutilising findings from this and others gathered in the earlier stages of the EMBED-Care programmeto co-design and test the feasibility of an intervention to improve the care and the quality of life for both people with dementia and their carersThe co-design will involve running workshops and focus groups with three distinct groups; people with dementia, their carers and health care professionalsto develop a feasible and appropriate intervention which considers a diverse range of needs.  

PhD Student: Juliet Gillam

Exploring and testing the feasibility of using a Person-Centred Outcome Measure (PCOM) to facilitate shared decision-making on care and treatment between the person with dementia living at home, and their informal and formal caregivers

People with dementia in the early to moderate stages mainly live at home, but little is known about the need for palliative care for this population. As dementia progresses, communication of needs and decision-making becomes challenging. The aim of this PhD is to explore and test the use of the Integrated Palliative Outcome Scale for Dementia (IPOS-Dem) to support shared decision-making between people with dementia living at home, their informal and formal carers to improve outcomes, using mixed methods approaches.

PhD Student: Tofunmi Aworinde

Identifying patterns in health service access and inequalities towards the end of life for people with dementia

This PhD aims to identify patterns in healthcare access for distinct groups of people with dementia and understand how quality of dementia end of life care could be assessed using existing datasets. By unveiling health service access patterns, and the associated factors, we can identify groups who experience higher disease-related burden and inequalities. A systematic review will be conducted to identify existing population-based quality indicators for the care of frail, elderly and people with dementia who are approaching the end of life. Secondary analysis of routine data will map out patterns of hospital admissions for people with dementia. Subsequently, a larger retrospective cohort study to classify people with dementia who have distinct patterns of health service access over the course of the illness and to examine associated factors with service access will be conducted. Finally, future population burden of health service use by people with dementia will be projected.

PhD Student: Emel Yorganci