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Welcome to the Summer 2020 edition of EMBED-Care’s newsletter. We start by hoping that you and your family and friends are safe and well at this time.


As with so many other research studies we have had to adapt rapidly to new circumstances and the challenges brought by COVID-19. We will need to continue to do this over the coming months, but are confident that we can progress and deliver the programme. The impact this has had on frail older people highlights the important contribution that EMBED-Care will make.

Fortunately, we can continue to advance the early work streams (systematic literature reviews, policy review and analysis of routine data), whilst we adapt work stream 3 (the prospective cohort study) to work within likely COVID-19 influenced changes. We have maintained the involvement of our Patient and Public Involvement panel. We are looking ahead to continuing our engagement work and planning the latter work streams which will synthesise the data, design and test our intervention.


We, along with Dr Katherine Sleeman and Ali-Rose Sisk, have increased our clinical work over the last few months, and are grateful to all of the team for their commitment and ongoing hard work whilst working from home in very strange circumstances. 

In this newsletter we hear from full-time PhD student and qualified nurse, Ali-Rose Sisk about her return to part time nursing during COVID-19 and how her experiences are informing her PhD. We also outline our work with UCL’s Prion Unit to explore, for the first time, the unmet needs of people with Prion Disease and their family carers, as part of Work Stream 3.

A key aim of EMBED-Care is to develop the future generation of researchers in this field. Our commitment to this is demonstrated through the five PhDs in the Programme. In this newsletter we profile our PhD students and the progress they are making. 


Liz and Catherine 

Prof Liz Sampson, Principal Investigator and Dr Catherine Evans, Co-Principal Investigator
Newsletter 3, Summer 2020.


Practice to PhD

Ali-Rose Sisk is a full-time PhD student on the EMBED-Care Programme. The title of her PhD is ‘Understanding palliative care needs for people with frontotemporal lobar degeneration’. Whilst continuing to work on her PhD, as a qualified nurse Ali-Rose has returned to nursing part time in a care home during COVID-19. Here she reflects on this experience and how it will help to inform her PhD:
As a nurse, I have always had a huge interest in dementia care and I am currently in the first year of my PhD which aims to further understand the palliative care needs for people with frontotemporal lobar degeneration. I am paying particular attention to the palliative care concept of ‘total pain’ which originally comes from the work of Cicely Saunders. It includes not just physical pain but social, psychological and spiritual pain.

From working in the Marie Curie Department at UCL, I have further developed my knowledge and confidence to begin ‘end of life care’ conversations with patients and their families at a very early stage. As a result of COVID-19, I see the importance of having these conversations earlier, rather than later, in a comfortable, open and friendly environment whereby patients have time to reflect and ask questions. I am grateful to have the opportunity to use my academic knowledge and apply it directly to my clinical work.
Currently I am working in a care home which specialises in dementia care. My clinical work has allowed me to ensure that all patients have a person-centred palliative care plan in place.
As a nurse I have always accounted for and cared for my patients ‘total pain’ and using the research skills I have developed during my short time at the Marie Curie department, I am now able to apply the concept of ‘total pain’ to each patient care plan.
This ensures that we as nurses are assessing and documenting our patients physical, psychological, social and spiritual well-being in terms of pain. We also closely monitor other aspects such as appetite, sleep, mood and social interaction to ensure that we are capturing any changes which may be a result of ‘total pain’. This is novel to my current workplace and an action we are taking forward with us.

There is no doubt that our patients and families have been missing one another and this can create social and/or psychological pain. To combat this, we have implemented video calls, letter writing activities and phone calls through our resident windows. This has been extremely rewarding for not just our patients but also families, friends, staff and even some pets!
As a result of identifying and measuring our residents ‘total pain’ we can continue to make these positive changes with an overall aim of increasing our patient’s quality of life.
Although times are challenging for everyone, I am glad to be on the front line experiencing the importance of my research area with the patient and I look forward to furthering my studies as part of the EMBED-Care team.

Ali-Rose Sisk
EMBED-Care Work Stream 3: Prion Cohort

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EMBED-Care’s Work Stream 3 will collect data from around 300 people living with dementia, their family and informal carers as well as health care professionals. We will explore unmet needs and determine how these impact on comfort, quality of life, the use of services, care transitions, for example from home to hospital and carer experiences including views of social support and health and social costs. This will produce new information on unmet needs and how we can address these.
We will also be running two smaller studies. Firstly, Ali-Rose Sisk’s PhD will be looking at Frontotemporal dementia (FTD) and secondly, we are delighted to be working with UCL’s National Prion Unit to explore the unmet needs of people with prion disease and their family or informal carers.

Prion diseases are neurodegenerative conditions, which affect humans and animals. They can be sporadic and occur for no known reason, inherited or acquired through a medical procedures or food. CJD (Creutzfeldt-Jakob disease) is perhaps the most well-known prion disease. It is a disease that progresses very quickly and there is little information about the experience of having this disease or caring for someone with CJD. A few case studies exist, but these tend not to look at palliative care for people living with this and similar conditions. Those with CJD are often diagnosed at a young age and it can be left to their family to make difficult decisions about their care in a short space of time.

The EMBED-Care Prion Cohort will focus on fifty people living with a confirmed diagnosis of sporadic CJD and follow them and their family and formal carers for up to 12 months. We will be working alongside the National Prion Monitoring Cohort (NPMC) study, who will recruit those who are eligible to take part and collect the data as part of their ongoing work. EMBED-Care's research team at UCL will manage and analyse the data.
You can find out more about UCL’s Prion Unit on their website:
EMBED-Care's PhD's

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EMBED-Care’s five PhD students are supervised by members of the EMBED-Care team with regular supervision and thesis committee meetings to provide them with expert guidance as their work progresses. Here our PhD students provide a summary of their progress to date:

Ali-Rose Sisk: Understanding palliative care needs for people with frontotemporal lobar degeneration (FTLD).
My PhD focuses on investigating unmet needs of those with young onset dementias (YOD). This aims to identify the prevalence of symptoms in people with Frontotemporal Dementia (FTD) which may contribute to ‘total pain’ and identify how this may impact on Quality of Life (QoL). I am currently completing the screening process for my systematic review, for which the protocol is available on PROSPERO:
I am working on my systematic review whilst currently working part-time as a nurse in a specialist dementia care home. I am preparing for my second thesis committee meeting in June.
Sophie Crawley: An exploration of experience of grief and unmet palliative care needs in family carers of people with dementia
My first Thesis Committee meeting was held in February, which was a great opportunity to discuss my aims and begin to refine my study questions.
Since then, I have begun my systematic review, titled ‘How is grief being measured in family carers of people with dementia and what factors are associated? A systematic review’ and registered the protocol on PROSPERO: Databases have been searched and I am now screening full text papers for inclusion.
I have identified measures and questions to use to explore carers’ experiences of grief, and factors which may impact on grief such as social support. I have also started to consider the impact of Covid-19 on these factors, and how I might explore this with family carers.

Emel Yorganci: Identifying patterns in health service access and inequalities towards the end of life for people with dementia
 My PhD involves working with large data sets. I am currently familiarising myself with data from the Clinical Record Interactive Search (CRIS). There are more than 19200 cases in this data set, which includes all patients over 50 years old with a dementia diagnosis and unplanned hospital admissions who were seen at the South London and Maudsley NHS Trust up to the end of March 2018.
The plan is to describe the patients’ unplanned hospital admissions and length of stay from the point of diagnosis up to March 2018 or the patient’s death.
I have been making good progress with my systematic review. This aims to identify all existing population-based quality indicators for the care of frail, older people and people with dementia who are approaching the end of life and to evaluate each indicator’s measurement properties and appropriateness for use. A total of 270 papers were read and screened by two reviewers of which 49 papers will be included in the review.

Juliet Gillam: Organisational interventions to improve palliative dementia care: Design, implementation and feasibility test 
Since registering for my PhD in January, I have focused primarily on starting a systematic review which will inform the later stages of my project. The review is focused around eHealth interventions to support assessment and decision making for residents with dementia in care homes. I will be exploring the kinds of interventions currently being used in care homes, looking at findings surrounding effectiveness, and at the strategies that are being employed to ensure successful implementation. I have recently submitted my registration form to PROSPERO and am currently refining my search strategy. As for most, remote working as a result of the COVID lockdown has impacted work flow to some extent, but the continued support from my supervisors and the team has been excellent.    
Jesutofunmi Aworinde: 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
I am currently scoping the literature and preparing the protocol for my systematic review, which will focus on to understanding how person centred outcome measures are used in routine care of people with dementia to enable shared decision-making between people with dementia and/or their informal carers and care professionals to improve outcomes for the person with dementia. I will soon be registering the review on PROSPERO. Since my thesis progression committee in April, I have been refining my thesis protocol.  
Delivering a step-change in the way we care for people with dementia
towards the end of life
ESRC/NIHR disclaimer: This project was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of the UK Research and Innovation. The views expressed are those of the author(s) and not necessarily those of the ESRC, UKRI, NHS, the NIHR or the Department of Health and Social Care.
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