International Conference on
Palliative Dementia Care, Belfast,
8th – 10th May 2019
Special thanks to our Official Media Partner:
Heather Weir MSc BSc RN
A qualified nurse by profession, Heather has been the CEO of the Northern Ireland Hospice since January 2015. She has held leadership roles in the Charity Sector for over 15 years, leading transformational change, supporting and empowering people to be at their best, elevating performance and driving excellence across all organisational divisions. Using fresh thinking, she leads with authenticity and creativity to ensure the sustainability of fundraising and statutory income. Heather provides transformational leadership and strategic direction, ensuring the focus remains on delivering the highest quality care which is person and family centred. She ensures all legal, regulatory and best practice prerequisites are adhered to ensure the income needed to deliver the hospice services for infants, children and adults.
Zena is a registered mental health nurse who has worked in health and social care for the past 23 years, most of this time has been spent working in dementia care. Passionate about improving care for people with dementia and their families, Zena has been an Admiral Nurse for the past 6 years and joined Dementia UK in 2016. She has a special interest in supporting people with advanced dementia and their families and she is currently undertaking a PhD in relation to decision making when a person with advanced dementia deteriorates in a Nursing Home.
Esther is currently a lecturer in the School of Nursing at Ulster University. She qualified as a nurse in 2005, and has worked across multiple settings, including the acute sector, Northern Ireland Hospice and Independent Sector. She undertook her Specialist Nursing Practice in both Palliative Care and Dementia Care. Esther completed her PhD in 2017, researching perspectives, knowledge and experience of ACP for people living with dementia in the long-term care setting. Her research involved a mixed methods approach, and involved both health care professionals and families.
Esther has several publications in the context of ACP for people with dementia and has been involved as an expert reviewer for several national policy documents, including the GAIN Guidelines for Palliative Care in Nursing Homes and the Irish Hospice Foundations suite of documents focused on Palliative Care for People with Dementia. She is also an invited peer reviewer for several academic journals.
Esther is currently secretary for the International Network for Doctoral Education in Nursing (INDEN), is a fellow of the European Academy of Nursing Scientists, a board member of the Northern Ireland Palliative Research Forum and a member of the All Ireland Gerontology Nurses Association and the All Ireland Institute for Hospice and Palliative Care.
Her passion is to improve the care of people living with dementia across the trajectory, but with a particular focus on the provision of optimal palliative care. Esther will be sharing her findings from her PhD, that focuses on the reality of advance care planning for people with dementia, and the stark reality that they are presently absent from the process.
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.
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’.
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.
Dr. Catherine Evans
Dr Catherine Evans, is a HEE/NIHR Senior Clinical Lecturer and Honorary Nurse Consultant in Palliative Care, based at the Cicely Saunders Institute King’s College London and Sussex Community NHS Foundation Trust.
Catherine’s research and clinical practice concerns developing and evaluating palliative and community care services and interventions for older people living with frailty, dementia and multi-morbidity. She focuses on the integration of palliative care across health and social care.
Catherine is the co-lead of a progamme of work called EMBED-care – Empowering Better End of life Dementia care, funded by the ESRC/NIHR. She leads this work with Dr Liz Sampson, UCL. The programme aims to understand current and future need for dementia palliative care and how people with dementia move through the health and social care system. They will develop new models of palliative dementia care that can be delivered by mainstream services, where people with dementia live and receive care.
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.
Agnes Houston, MBE
Agnes Houston was diagnosed with early onset dementia of the Alzheimer type in 2006 at the age of 57 yrs.
Agnes is a current board member of Dementia Alliance International, Dementia Friendly Communities Helmsdale and an Exchange Fellow of Edinburgh University. She is taking part in a Disability Research on Independent Living & Learning (DRILL) funded project looking at the design and findability of accessible toilets when travelling. She is an active member of the Scottish Dementia Alumni Group which is a part of the DEEP network. She is also a Knowledge Exchange Associate with the Dementia Centre, Hammond Care. She campaigns for best practice in dementia care and improving the lives of people with dementia especially on sensory issues. Agnes is supported in her work by her PA Joanna Fozard of HammondCare.
Agnes has written a booklet on Dementia and Sensory Challenges, produced by Life Changes Trust (2015), co-authored a book on practical ideas for people with dementia living at home – My Home, My Life: Practical ideas for people with dementia and carers, produced by HammondCare (2018) and has recently published Talking Sense – Living with Sensory Changes and Dementia with Dr Julie Christie, also with HammondCare.
Agnes received a lifetime achievement award from Alzheimer Scotland in 2013, was awarded an MBE in 2015 and a Churchill Fellowship in 2016. Not only does Agnes like to raise awareness she likes to have fun and practices yoga and mindfulness.
Julia Jones is a writer and the co-founder of John’s Campaign (https://johnscampaign.org.uk/#/) with Nicci Gerrard. Until December 2018 she was also the primary carer for her mother June who died with dementia aged 94. The ten years of her mother’s life made a profound impression on Julia and she has recorded aspects of their experience in numerous blogs and article as well as the book Beloved Old Age (Golden Duck 2016). She has also produced two activity books for older people and their carers as well as Honoured Guests, a guide for care home managers published by Care England (2018).
Eddie Lynch is the Commissioner for Older People for Northern Ireland and started his appointment in June 2016. Prior to his appointment, Eddie was the Chief Executive Officer of Age Sector Platform. In this role, he was responsible for managing the organisation’s staff and supporting the board, committees and wider membership in its policy development and campaigns work. Eddie joined Age Sector Platform in February 2008 having previously worked at the Consumer Council for five years, where he was Head of Consumer Affairs.
Charlotte McArdle, Chief Nursing officer (CNO) for Northern Ireland is responsible for professional leadership, performance and development of the professions in Northern Ireland, including Allied Health Professionals. In her role Charlotte ensures that standards of practice are developed in pursuit of high quality care and experience that is supported by high quality professional training and development. Charlotte is department’s policy lead for patient experience, real time user feedback, co-production and nutrition.
Charlotte has undergone a Florence Nightingale Leadership Development Scholarship focusing on embedding a culture of Safety, Quality and Experience. This includes the development of KPI’s for all service teams. She has a strong commitment to person centered practice and evidencing improved outcomes for people who use health and social care services, particularly regarding safety, quality and experience. Charlotte completed the International Council for Nurses Global Nurse Policy Leadership Programme in Geneva 2017. She is an Honorary Professor at Ulster University faculty of health science.
Dr. Micheal McBride
Dr McBride took up the post of Chief Medical Officer during a time of significant change for Health and Social Care in Northern Ireland with responsibilities for Policy and Strategy in relation to Public Health, Quality and Safety and Research and Development. He also provides strategic advice to Minister and other Government departments on health related matters. He has been closely involved in the development of the new Health and Social Care structures, post Review of Public Administration, including the establishment of the Public Health Agency. Dr McBride currently leads in the work to transform health and social services in Northern Ireland in line with Health and Wellbeing 2026 – Delivering Together.
At the request of the Health Minister Dr McBride took up the post of Chief Executive of Belfast Health and Social Care Trust from December 2014 to February 2017. He combined this role with Chief Medical Officer. As Chief Executive Dr McBride was head of an integrated health and social care Trust which provided hospital-based and social care services to the population of Belfast, as well as most of Northern Ireland’s regional specialist services. He had responsibility for key Ministerial priorities, corporate responsibility for the Trust’s 20,000 employees, and overseen the Trust’s annual budget of almost £1.3bn.
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.
Shailey Minocha is Professor of Learning Technologies and Social Computing at The Open University (OU), UK. The focus of her research has been to understand users’ interactions with technology and investigate the factors that affect usability, user experience and user adoption of technology-enabled systems. By applying the principles of Human-Computer Interaction and systems thinking, she examines the implications of contemporary technological developments for individuals, organisations, society and policy.
In the research programme (2016 – 2019) funded by Sir Halley Stewart Trust and the ESRC Impact Acceleration Account and in collaboration with Age UK Milton Keynes, Carers MK and Samsung, Shailey and her colleagues at the OU have investigated whether and how wearable activity monitoring technologies can contribute towards supporting active and healthy ageing, in self-monitoring and self-management of health, in alleviating social isolation and loneliness, and in caring. Examples of activity monitoring technologies that help to track activity, exercise, heart rate and sleep, include those from Samsung, Fitbit and Garmin.
Richard Pengelly was appointed as the Permanent Secretary of the Department of Health, on 1st July 2014. Prior to this Richard‘s previous post was as the Permanent Secretary of the Department for Regional Development (DRD)
Richard is a Chartered Accountant, and before joining the Department for Finance and Personnel in 1998 he worked in the Northern Ireland Audit Office and in private accounting practice. He also holds a Post Graduate Diploma in Public Administration from Warwick University.
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.
Bio coming soon…
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.
Cathy Warnock LLB Hons McSc
Cathy graduated in Law from Leeds University in 1992 and qualified as a Solicitor through the Institute of Professional Legal Studies, Belfast, in 1994. She subsequently obtained a Masters Degree in Organisational Management from Queen’s University. She has specialised in Private Client work for 20 years and has worked in the Private Client Department of Edwards & Co Solicitors since 2007.
Private Client work involves advising clients on various aspects of planning for the future – making wills, lifetime gifting of assets and completion of Enduring Power of Attorney documentation. Advance care planning sits alongside these areas and assessing the capacity of clients is integral to much of this work.
Outside of work Cathy is a Dementia Friendly Communities Champion for the Alzheimer’s Society, delivering workshops to increase knowledge of dementia in the community.
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.
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 Brazil holds the appointment of Professor of Palliative Care in the School of Nursing and Midwifery, Queen’s University Belfast. He is also a Fellow in the Centre of Social Innovation and Evidence, Queen’s University Belfast, where he is the Lead for the Chronic Illness and Palliative Care Research Programme. He holds an honorary appointment in the Department of Health Research Methods, Evidence, and Impact, Faculty of Health Sciences, McMaster University, Hamilton, Ontario Canada.
Professor Brazil’s research focuses on the structure, process, and outcomes in service delivery of quality care for family carers and patients as they near the end-of-life. As part of this work, he examines how personal, social, and environmental factors affect care. This work is designed to assist in the development, evaluation and translation of new and innovative interventions to improve access, quality and outcomes in this population. He has over 300 publications including 187 peer review journal publications related to these interests. He has taught undergraduate and post graduate learners in palliative care and health services research. He has been active on numerous working and advisory groups at the international, national, and regional levels and has served on several grant review boards in both Canada and Europe.
As CEO of Life Story Network and tide – together in dementia everyday Anna provides leadership and strategic direction and forges sustainable relationships with a broad range of organisations and networks. Anna co-founded Life Story Network and tide after a long career in the field of health and social care, including senior and Director level posts across the sector, and a personal experience of caring. Anna is also an Associate with Manchester Business School, former Tutor on the NHS Elizabeth Garett Anderson (EGA) Leadership Programme and is a published author in the field of health care leadership and dementia.
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