About this resource

Background to this resource

This resource has been developed for care home staff in the United Kingdom to support communication and shared decision-making with family carers of residents with advanced dementia on end-of-life care. In this resource, you will be introduced to the Comfort Care Booklet and receive training on how to host a Family Care Conference. This work was supported by a research grant funded by the Alzheimer's Society UK and is based on guidance from the United Kingdom developed from the mySupport study.

Staying up-to-date

The information provided here and the resources we have signposted to are relevant to the best of our knowledge at this moment in time. This may change.

We will review its content and ensure it remains as accurate and timely as possible. We welcome your feedback to ensure this resource is as helpful and useful as possible. The website was last updated in October 2022.

Visiting from outside the United Kingdom?

The Comfort Care Booklet was developed by family physician Marcel Arcand in Canada and adapted for use in the United Kingdom in 2021. If you are visiting this resource from outside the United Kingdom, there may be different guidance specific to your country. The original Canadian Comfort Care Booklet (available in English & French) has been adapted for use in Italy, Japan, the Netherlands, Czech Republic and the Republic of Ireland. These Comfort Care Booklets are available on request. Please email info@mysupportstudy.eu for more information.

Meet the Team

This project has been developed by Queen's University Belfast in partnership with the following colleagues:

Team member
Kevin Brazil

Queen’s University Belfast

Professor Brazil holds the appointment of Professor of Palliative Care in the School of Nursing and Midwifery, Queen’s University Belfast. Professor Brazil’s research focuses on the structure, process, and outcomes in service delivery of quality care for family members and patients as they near the end-of-life. This work assists in the development, evaluation and translation of new and innovative interventions to improve access, quality and outcomes in this population. More information here.

Team member
Gillian Carter

Queen’s University Belfast

Gillian is a Lecturer in Chronic Illness in the School of Nursing and Midwifery, Queen’s University Belfast. Gillian has a BSc in Adult Nursing and currently has 14 years’ experience in healthcare research. She contributes to the teaching in undergraduate and post-graduate modules. Her field of research focuses on chronic illness, specifically on communication and decision-making for family members and the frail elders, in particular for individuals affected by dementia. She is also interested in enhancing the provision of support for family members focusing on the availability of peer support facilities and specifically online peer support interventions, developed through co-design. More information here.

Team member
Karen Harrison Dening

Dementia UK

Karen has over 45 years’ experience in nursing, most of those being in dementia care in a variety of settings and contexts. For the past 15 years she has worked with Dementia UK and is now the Head of Research and Publications. More information here.

Team member
Christine Brown Wilson

Queen’s University Belfast

Christine is Professor of Nursing (Education) at Queens University Belfast with an international reputation in care homes and dementia research. As a Registered Nurse, Christine has many years of experience working in care homes caring for older people, including those with dementia. In her research, Christine uses participatory methods such as co-design, enabling the voice of residents, families and staff to be heard. She has led the development of several digital resources for staff in care homes. More information here.

Team member
Violet Graham

Care Home Manager

Violet is a Registered Mental Health Nurse with 40 years of experience; she has worked with residents living with dementia for most of her career. As a Registered Home Manager, Violet has many years of experience managing homes for residents living with dementia. Violet has also been involved in research projects with Queen’s University Belfast: training as an advance care plan nurse facilitator, providing input into a training programme to train nurses to hold family care conferences, and supporting online resources with filmed content.

Team member
Silvia Gonella

University of Turin

Silvia Gonella is a Registered Nurse and has worked as a clinical nurse in oncological and medical settings. She is currently responsible for research activities at the City Hospital of Health and Science of Turin (Italy). She has lectured in research methodology, evidence-based nursing, and palliative care nursing at the University of Turin as well as at the University of Verona. Her main research areas are end-of-life communication in nursing homes, symptom management in cancer patients, and improving nursing students’ clinical learning experiences. More information here.

Team member
Catherine Buckley

Practice Development Lecturer

Catherine Buckley is a Practice Development Lecturer at Northridge House Education and Research Centre, St Luke’s Home. She has a background in Action Research as well as person-centred practice development, dementia and long-term care, both as a practitioner and researcher. This gives her a unique insight into knowledge utilisation and work-based learning approaches in such settings. More information here.

Team member
Julie Doherty

Queen’s University Belfast

Julie is a Research Fellow within the School of Nursing and Midwifery at Queen’s University Belfast. She has experience developing, implementing, and evaluating evidence-based educational programmes. Her research focuses on understanding and supporting health and well-being across the life course, including palliative care for older adults. More information here.

Team member
Lana Cook

Queen’s University Belfast

Lana is a Research Assistant within the School of Nursing and Midwifery at Queen’s University Belfast. As a Registered Nurse, she has worked in critical care and medical settings. The research work Lana has been involved in has focused on palliative and end-of-life care for people with advanced dementia and support for their informal caregivers.

Acknowledgements

We wish to acknowledge the care homes and mySupport Community of Practice members who supported us in the development of this resource. We also thank Morrow Communications for working with us to create this website and the roleplay actors for contributing to the video content: Cathy Knight, Shauna Neeson, David Scott, Matt Birch, and Jack Griffin-Bennett.

This work was supported by research grant number AS-IGF-17-001, funded by Alzheimer's Society.

Contact us

If you would like to get in touch about this training resource, please contact us at comfortcareguide@gmail.com.