International Conference on
Palliative Dementia Care, Belfast,
8th – 10th May 2019
Jenny T. van der Steen, PhD Associate Professor, Leiden University Medical Center
Jenny van der Steen’s research focuses on the end of life, and in particular, palliative care for people with dementia and for nursing home residents. She authored the European Association for Palliative Care white paper on palliative care in dementia with recommendations for practice, policy, and research. She is one of the editors of Palliative Medicine. Her work has been funded mostly by Dutch and European career awards. Collaboration with researchers in the UK, Italy, Flanders, US, Canada, Japan, Israel and other countries has been part of cross-national work. Quality of life and dying, symptom burden, and families’ satisfaction with care are main outcomes of her studies. Work on non-pharmacological interventions and advance care planning is ongoing. Other work focuses on methodological issues such as prediction, properties of measurement instruments, reporting practice and research design.
Karen has over 40 years’ experience in nursing, most of those being in dementia care in a variety of settings and contexts. For the past 13 years she has worked with the charity, Dementia UK, and is now the Head of Research and Publications. She came to the ‘research world’ late in her career. Appointed to a Consultant Nurse position the opportunity arose for a sponsored PhD. She thus gained her PhD at University College London in 2014 focusing on advance care planning and end of life care in dementia. She has several honorary academic positions at UK universities. Through her role at Dementia UK she is a collaborator, co-applicant and expert member of several NIHR, Alzheimer’s Society, ESRC research studies, such as; PRIDE, SEED and PriDEM. Her research interests are dementia care, case management, carer resilience, palliative and end of life care and advance care planning. As well as her academic work she has been involved in the development of several national evidence guidelines under the auspices of the National Institute for Health and Care Excellence (NICE), such as, the original dementia guideline and its recent refresh and currently the adult carer guideline.
Jo Hockley trained as a nurse at St Bartholomew’s Hospital, London in the early 1970s and has worked in specialist palliative care for over 20 years. She has had a passion for disseminating palliative care knowledge within generalist settings. During her career she has set up two hospital-based palliative care teams (one in London and one in Edinburgh). Since 2000, and as a result of her PhD, Jo has worked exclusively in research and quality improvement initiatives involving the development of palliative care in care homes. In 2008, she set up a Care Home Project Team to reach out to over 100 care homes within which some innovative research projects were undertaken. Jo has published widely both on the strategic development of hospital-based palliative care teams and palliative care for older people in care homes. She has recently been awarded an OBE for her work to palliative care nursing. Jo returned to Edinburgh in August 2014 and is currently working with the Primary Palliative Care Research Group at the University of Edinburgh leading the work to establish a teaching/research-based care home centre for excellence and community engagement in the City of Edinburgh.
Professor Colm Cunningham, Director of the Dementia Centre, HammondCare
Colm leads an Australian and International team of over 200 staff involved in research, education, clinical care and consultancy. Key to our work is the translation of this knowledge and expertise into accessible practical advise, publications and tools to improve practice. The centre’s priorities are building design, life engagement, models of care, understanding behaviour and end of life care. Colm is an international expert with over 30 years’ experience in older age care.
A general and intellectual disability nurse and social worker, Colm was the deputy director of the UK Dementia Centre, University of Stirling and has written extensively and undertaken research on a wide range of issues about dementia including built design, pain care, hospital care, night time care and intellectual disability. Working across a range of faculties of education and research in HammondCare, Colm has significant expertise in supporting translational research and meaningful practice and culture change. Colm is a Conjoint Associate Professor at the University of New South Wales in the School of Public Health and Community Medicine and a Visiting Fellow in Dementia Design and Practice at the University of Edinburgh School of Health in Social Science. Colm is also a member of the Wicking Strategic Review Panel. Colm lead national dementia behaviour response services, Dementia Support Australia, with the aim of reconsidering the meaning and causes of ‘behaviours’.
Bernadine McCrory, Private and Voluntary Health Sector
Bernadine has worked in the private and voluntary health sector in the North and South of Ireland for more than 25 years and is a Registered Nurse with additional qualifications in Health Service Management and Sustainable Investment in the Third Sector. This course initiated an interest in Social Innovation.
Bernadine was initially involved with Alzheimer’s Society as a volunteer, joining the team as Service Improvement and Business Development Manager in 2009. After a period as interim NI Country Director, this was made permanent in May 2012. Advocacy for people with dementia is a personal area of interest for Bernadine.
Professor Joanne Reid’s research interests predominately lie in palliative care. She has an established and international portfolio of research expertise, with current grants focusing on developing clinical phenotypes for cachexia in chronic diseases and the development and evaluation of complex health care interventions.
Professor Reid has published widely with inter-disciplinary colleagues and her research has informed national and international evidence based guidelines. She is also Chair of the Palliative Care Research Network Strategic Scientific Committee, All Ireland Institute of Hospice and Palliative Care; the QUB representative in the European Palliative Care Research Centre; and an external examiner for the European Certificate in Essential Palliative Care.
Luc Deliens, PhD, is Professor of Palliative Care Research, Founding Director of the End-of-Life Care Research Group of the VUB University & Ghent University in Belgium and member of the Royal Academy of Medicine of Belgium. His team is with about 60 staff people, the country’s largest research group in palliative care, and within top-3 in the field of palliative care research in Europe.
Internationally, he chairs European Association for Palliative Care (EAPC) Reference Group on Public Health and Palliative Care and co-chairs the EAPC Research Network and is involved in different on-going EU funded research projects. He successfully supervised 40 PhDs and is actually supervising about 25 PhD students. He published over 500 papers or book chapters and received several scientific awards for his scientific work.
Tracey Bleakley, CEO Hospice UK
She joined Hospice UK in January 2016 and before then was CEO of the Association of Police and Crime Commissioners.
Her previous roles include Chief Executive of the Personal Education Group (pfeg) where she led a successful campaign for financial education to be included in the National Curriculum.
She was also UK Director of the charity MEND, which tackles obesity and promotes healthy living, and spent 13 years in management consultancy with Price Waterhouse, Accenture and ITV.
Tracey is on the board of the Gold Standards Framework and on the Lancet Commission into the Value of Death. She is also Co-Chair of the Palliative Care Leadership Collaborative.
She holds an engineering degree, MBA, postgraduate qualifications in International and Social Policy and is a Chartered Director.
Mary Marshall is a senior consultant for the Dementia Centre HammondCare (UK and Europe). She specialises in the design of environments for people with dementia. Her current focus is toilet design because it has such a profound impact on the lives of people with dementia but she is also working on other design guides. She is an Hon. Prof. at the University of Edinburgh and Emeritus Prof. at the University of Stirling where she ran the Dementia Services Development Centre from 1989 until 2005, following this with nine years as a design associate.
COUNTDOWN TO ICPDC