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Welcome to the Spring 2022 edition of EMBED-Care's newsletter 
We are well over half way though the programme and despite COVID-19 we have continued to make good progress, adapting where necessary to keep EMBED-Care moving forward. 

We continue to recruit to our main cohort study via NHS Hospitals. We are delighted that recruitment to our Young Onset Dementia cohort and Prion cohort is going well. Many thanks to all those who have assisted in helping us to recruit and collect data, and especially to those living with dementia and family carers who have shared their views and experiences.  

We have made progress with the development of the intervention aspect of EMBED-Care, which is where we hope to deliver a long-term positive change in practice.

Two of our PhD students have had their systematic reviews published. Sophie Crawley's on the grief of family carers and Juliet Gillam's on the implementation of our intervention. We are delighted to have had four posters accepted for the European Association of Palliative Care in May 2022, which demonstrates our progress despite delays due to COVID.                  
In this newsletter we report on the development of the decision support tools for clinical care, which will be used in our intervention, update on the ENDEMIC study on supporting family carers' decision making, provide overviews from two of our PhD students systematic reviews and overview the posters accepted for the European Association of Palliative Care Conference.  

Liz and Catherine
Prof Liz Sampson, Principal Investigator and Prof Catherine Evans, Co-Principal Investigator
Newsletter 8, Spring 2022
Work Stream 5: Developing Decision Support Tools for Optimal Care

© Polina Zimmerman, Pexels

Later this year we will be testing the EMBED-Care intervention with care homes and home care teams who are providing palliative care for people living with dementia, and supporting their families. This has been developed using information and data we have gathered from the studies we have completed over the last two years. The intervention consists of a comprehensive assessment (IPOS-Dem) which is a set of questions to assess symptoms and/or problems someone with dementia may be experiencing, and their family carers. This assessment will be linked to a set of decision support tools for common distressing symptoms or concerns, such as eating or swallowing difficulties. The tools will help family members and professionals make decisions about how to support the individual with dementia and manage any symptoms and concerns found using the IPOS-Dem.  The decision support tools are simple flowcharts which break down the decisions down into three steps: 1) fully assess the symptom, problem or concern; 2) identify the cause; and 3) treat the cause. Decision support tools should help prompt thinking about the concerns and lead to action and review, empowering those providing care and support.

Over the past eight months we have been working hard to develop a set of decision support tools and accompanying training materials. We have conducted two workshops with people living with dementia, five workshops with family carers, and health and social care professionals, in addition to several smaller workshops. We have developed a set of 11 decision support tools including: overarching principles of good palliative care in dementia care; and managing delirium, eating and drinking difficulties, pain, skin care, sleep, constipation and incontinence, spirituality, mobility, individual wellbeing, and family carer wellbeing. Over the next couple of months, the decision support tools with the IPOS-Dem will be incorporated in an application (app) which can be used on an electronic tablet or smart mobile phone. Family carers and professionals will be able to use the app to support their caring role. We are currently working with a digital company to design and develop the application, before we test this with families, and health and social care teams.
Dr Nathan Davies, Work Stream 5 Lead

UK Research and Innovation (UKRI) are promoting the work of their COVID-19 research projects. They have selected our project ENDEMIC: Dementia and Decision Making During COVID-19, led by Dr Nathan Davies and Dr Nuriye Kupeli. This developed a freely available decision aid for carers of people living with dementia who developed COVID-19. It is going to be used in communications, including an e-mail to MPs, to show the real life impact UKRI funding has made.
Dr Nathan Davies & Dr Nuriye Kupeli, ENDEMIC Principal Investigators

Implementation of eHealth to Support Assessment and Decision-making for Residents With Dementia in Long-term Care

© Pexels Lukas

Juliet Gillam is a PhD Training Fellow on the EMBED-Care Programme, whose PhD is focused specifically on the implementation of the EMBED-care intervention for use in care homes. Here, Juliet provides and overview of her systematic review.  

Why did we do this review?
As dementia progresses, symptoms and concerns increase causing distress for both the person and the people who care for them. The majority of people with dementia will die in care homes, so it is essential that residents in care homes have proper access to healthcare in order to treat these increasing care needs and maintain quality of life. However, access to high-quality healthcare is varied and often insufficient. A potential solution to this is through the use of eHealth. eHealth is defined as health services which are delivered through the internet or other similar technologies and refers to things like video consultations and smart phone based apps. It allows healthcare specialists to provide care for a resident in a care home remotely, and help with things like assessing symptoms and making decisions about treatment. Although eHealth has been shown to improve access to health care for people with dementia in care homes, changing the way that people work is a real challenge and how we can ensure it is actually adopted and used in care homes is currently unknown. We did this review to try and better understand what things influence whether a new eHealth tool or device is adopted in the care home setting, and what we can do to try and increase the chances that that happens.  

What did we do?
We searched all the current literature for papers which were about factors that affect whether eHealth is taken up and used in care homes. We then grouped the factors into categories based on a framework called the Consolidated Framework for Implementation Research which is used to help describe and organise the different influential factors. Where factors didn’t fit in one of the categories, we created new groups.

What did we find?
We included 28 studies in our review which focused on a variety of different eHealth including video consultations, internet based assessment tools and apps delivered through a tablet. A range of key factors which influenced whether eHealth was adopted were identified. Most were related to the inner care home setting which included things like whether sufficient training was provided, whether care home managers were on board with eHealth and if staff felt like they had the time to learn about the new way of working. Four new categories were developed to accommodate new factors that didn’t fit on to the Consolidated Framework for Implementation Research. These related to the importance of considering both the needs of residents and also care home staff members who might use the eHealth tool if it is going to be successfully taken up.  

What did we conclude?
Many factors contribute to whether eHealth is successfully adopted in the care home setting. These span across many levels including the resident, staff members at the home and the organisation. Based on these factors we developed 18 practical recommendations on how to increase the chance of uptake for people developing eHealth for use in care homes.
Juliet Gillam, PhD Training Fellow

The full review is available to read: Gillam J, Davies N, Aworinde J, Yorganci E, Anderson J, Evans C. (2022) Implementation of eHealth to Support Assessment and Decision-making for Residents With Dementia in Long-term Care: Systematic Review. J Med Internet Res 2022;24(2):e29837.
Grief in family carers of people living with dementia: A systematic review
© Pexels Alex Green

Sophie Crawley is a Research Assistant and part-time PhD student on the EMBED-Care Programme. Sophie’s PhD focuses on grief of family carers and her systematic review on this topic has just been published.  
Dementia is the leading cause of death in the UK with more than 80 billion hours of care per year provided by informal carers. Dementia caregiving can have significant emotional implications for family carers, and the experience of grief while the person with dementia is still alive, is known as pre-death grief. Grief research in family carers of people with dementia has increased. We aimed to report on how common pre-death and post-death grief is and factors associated with this. We examined the research studies we found to explore relationships between pre-death factors and post-death grief and services used to manage grief. 

To do this we systematically reviewed literature looking at the experience of family non-paid carers of somebody with any dementia type where data was provided about pre-death and/or post-death grief.

We found that being a spouse, less educated, caring for somebody with advanced dementia, and greater burden and depression were associated with higher pre-death grief. Lower education level and depression were more likely to lead to higher post-death grief. Pre-death factors found to influence post-death grief were grief and depression. 

It is important to increase awareness of characteristics which increase the likelihood of higher grief as it can help identify those who may need support. Future research should focus on what supports or services are beneficial to grief experiences.
The full review can be found here: Crawley, S,, Sampson, E., Moore, K., Kupeli, N. and West, E. (2022) Grief in Family Carers of people living with dementia: A systematic review. International Psychogeriatrics, 1-32. doi:10.1017/s1041610221002786
EMBED-Care's Legacy: Capacity Building


In May 2022 the 12th World Research Congress of the European Association of Palliative Care (EAPC) will be held online. We are delighted that EMBED-Care will be represented by four posters, led by our PhD students and Research Assistants, representing work from our main cohort and the development of our intervention work. 

Aworinde J, Ellis-Smith C, Evans C J. Co-designing the process and requirements to use a Person-Centred outcome measure to enhance shared decision-making in dementia care.

Crawley S, Kenten C, Kupeli N, Collier, I and Sampson, E L. Learning from experience: running the EMBED-Care cohort study with people with dementia and their carers during the COVID-19 pandemic.

Gillam J,  Davies N, Evans C J. Co-designing an implementation plan for an eHealth intervention to optimise care for people with dementia in care homes.

Tunnard I, Gillam J, Vickerstaff V, Harvey C, Davis N, Ellis-Smith C & Evans CJ. The acceptability and effectiveness of eHealth interventions to support assessment and decision making for people with dementia living in care homes: A systematic review.

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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