Day One – 15th November
9 – 9:30 am – Doors Open, Light Refreshments Available
9:30 – 9:40am – Opening Words from Kim Tully, CEO Engaging Dementia, on Plenary Stage
PLENARY STAGE PARALLEL STAGE
Bryan Murray – Bryan is a member of the Irish Dementia Working Group supported by The Alzheimer Society of Ireland
Prof Ian Robertson will discuss the topic of Brain Health and Cognitive Reserve – how the onset of dementia may be slowed or delayed through healthy activation of the brain’s noradrenaline system.
Prof. Ian Robertson is Professor Emeritus in Psychology at Trinity College and was the founding director of Trinity College Institute of Neuroscience. He is a Founding Director of the Global Brain Health Institute, a Member of the Royal Irish Academy and a Member of Acadamia Europea. He is a highly-cited researcher on the brain’s attention systems and his most recent of a series of widely-translated popular science books is How Confidence Works: the new science of self-belief, published by Penguin in 2021.
The Economist Intelligence Unit defines value-based healthcare as “the creation and operation of a health system that explicitly prioritizes health outcomes which matter to patients relative to the cost of achieving this outcome”
Value-based healthcare is a healthcare delivery model in which providers, including hospitals and physicians, are paid based on patient health outcomes. Under value-based care agreements, providers are rewarded for improved health outcomes.
Value-based care differs from a fee-for-service or capitated approach, in which providers are paid based on the amount of healthcare services they deliver. The “value” in value-based healthcare is derived from measuring health outcomes against the cost of delivering the outcomes.
Critical questions in the context of dementia remain: Who’s values are valued? How do these promote respect for personhood?
Prof. Kate Irving – Kate works in Dublin City University, where she is Professor of Clinical Nursing, a joint appointment between DCU and the CHO9. Kate has a significant leadership role Irish dementia policy development and successfully led the national Dementia training initiative: Dementia Skills Elevator, aiming to develop dementia skills capacity in services and communities. She has also led several European research consortiums in dementia prevention and approaches to care and support.
Prof. Dominic Trepel – Dominic is an Assistant Professor (Health Economics), Faculty at School of Medicine (TCD) and Faculty at Global Brain Health Institute (TCD | UCSF).
Dr. Thomas Kelley – Tom is currently CEO of Sprink (www.sprink.co.uk), an organisation working to enable all people to enjoy the health and care outcomes that matter to them. Between 2018 and 2019, he was the National Clinical Advisor on Value-Based Health Care (VBHC) for the Welsh Government. Between 2013 and 2018 he worked at the International Consortium for Health Outcomes Measurement (ICHOM).
Dr. Helen Rochford-Brennan – Helen is a Global Dementia Ambassador, former Chair, and currently Vice Chair, of the Irish Dementia Working Group; and currently a member, (formerly Chairperson), of the European Working Group of People with Dementia and its nominee to the Board of Alzheimer Europe.
Light refreshments will be served
The presentation will provide an overview of CST including specific updates on CST training and implementation in Ireland. Recommendations for improving the availability of CST will be discussed.
Dr Michelle Kelly – Michelle has an undergraduate degree in Psychology and a Doctorate in Psychological Science: Applied Behaviour Analysis and Therapy. She is a Board Certified Behaviour Analyst, an Internationally Accredited CST trainer, and an Assistant Professor in Psychology at the National College of Ireland.
Dementia: Understand Together is tackling stigma and isolation by raising awareness of dementia and encouraging communities to take actions that will help to include and support those affected by the condition. The campaign is rolling out a new dementia inclusive icon which symbolises individual’s, organisations’ and communities’ solidarity with people with dementia and their families.
Fiona Foley – Fiona is a Senior Project Manager with the National Dementia Office. She was a business and competence manager in the automotive industry in Germany for 10 years. In Ireland, she then worked with a number of advocacy and health organisations. Most recently with the Alzheimer Society when she was seconded to the Health Service to develop a framework for Dementia Inclusive Communities. Before this, she established the Social Enterprise Siel Bleu, promoting physical activities for older adults and those with chronic diseases. She holds a BA in Business, MA in Management of Health and Non-profit organisations and certificates in Social Enterprise and Corporate Governance.
Aine Hutcherson – Aine is the Campaign Manager for the Dementia: Understand Together campaign. In addition, she leads a team responsible for producing accessible and translated resources to ensure everyone in our diverse communities can access vital health information from the HSE and their partners.
Aine has over 15 years’ experience in communications and marketing across both the public and voluntary sector in the UK and is passionate about improving health and wellbeing outcomes for all. Most recently she was responsible for communications and campaigns for Adult Care Services, Children’s Services and Public Health at Hertfordshire County Council, working closely with the NHS, commissioners and the community and voluntary sector. Previously she worked in fundraising and marketing for leading disability charity, Motability, who support people with complex needs with charitable grants to find mobility solutions that allow them to live life to the full.
Kevin Quaid – Kevin was diagnosed with Lewy Body Dementia in 2017 aged 53, after being diagnosed firstly with Parkinsons. He is a member of the Irish Dementia Working Group as well as vice chair of the European Working Group of People with dementia and co-founder of Lewy Body Ireland. Kevin has written two books – “Lewy Body Dementia, Survival and Me” and “I am KEVIN not Lewy”.
A catered lunch with a selection of freshly made dishes will be provided.
There is designated space to eat, relax and network.
Dementia Trials Ireland (DTI) is a five year study funded by Health Research Board HRB to offer clinical trials to people in Ireland living with, or at risk of developing dementia. The researchers and team involved will present an overview of the study, it’s progress and impact.
Professor Iracema Leroi – lead Dementia Trials Ireland (DTI)
Kate Byrne – member of the PPI panel, caregiver for husband John who has Alzheimer’s disease
Naomi Gleeson – member of the PPI panel, a person living with Lewy body dementia
Ann-Michelle Mullally – Clinical Study Coordinator Sense-Cog Care
This panel discussion will be chaired by Karen Meenan, PPI and Communications lead DTI
Karen Meenan is a Senior Fellow for Equity in Brain Health at the Global Brain Health Institute based in Trinity College Dublin and is co-creator of Lewy Body Ireland. She is the Patient and Public Involvement (PPI) and Communications Lead in Dementia Trials Ireland.
Members of the DRAT, facilitated by Ciara O’Reilly (ASI), will be talking about their experiences of being PPI contributors.
They are joined by Prof. Matthew Campbell who will speak on the lab-based impact of PPI
The Dementia Research Advisory Team is group of people living with dementia and current and former family carers who contribute to dementia research in a Person Public Involvement (PPI) capacity. These Experts by Experience influence, advise, and work with researchers across Ireland. Their unique insights add significant value to dementia research
Cíara O’Reilly – Ciara is the Research Project Officer with the Alzheimer Society of Ireland. She supports the members of the Dementia Research Advisory Team to engage in research in a Person Public Involvement capacity, as well as carrying out their own research project
Matthew Campbell – Matthew is Associate Professor in Genetics and Head of Department at the Smurfit Institute of Genetics in Trinity College Dublin. He graduated with a degree in Biochemistry from UCD in 2002 and went on to complete his PhD in 2006 at the same institution. In 2020 he was awarded one of Europe’s most prestigious grants from the European Research Council. In the same year he was elected Science Foundation Ireland’s early career researcher of the year. He is founder and Director of the Neurovascular Genetics Unit at TCD and has over 18 years of research expertise in the area of blood brain and blood retina barrier biology.
DRAT Members on Panel:
Brenda Buckley
Tony McIntyre
Janice Nolan Palmer
Kevin Quaid
Panel discussion with representatives from the over 40 national partner organisations who are supporting the Dementia: Understand Together campaign. Fiona Foley will lead discussion about their motivation to join the campaign, explore the actions they are taking and how they are contributing to changing the dementia culture in Ireland.
Partner Organisation Representatives:
Ronan Murphy | Head of Customer Experience | Irish Rail |
Louise O’Brien | Corporate Social Responsibility Manager | Boots |
Emer Coveney | National Programme Manager | Age Friendly Ireland |
Enda Brennan | CEO | Men’s Sheds |
Fiona Foley – Fiona is a Senior Project Manager with the National Dementia Office. She was a business and competence manager in the automotive industry in Germany for 10 years. In Ireland, she then worked with a number of advocacy and health organisations. Most recently with the Alzheimer Society when she was seconded to the Health Service to develop a framework for Dementia Inclusive Communities. Before this, she established the Social Enterprise Siel Bleu, promoting physical activities for older adults and those with chronic diseases. She holds a BA in Business, MA in Management of Health and Non-profit organisations and certificates in Social Enterprise and Corporate Governance.
Brain Health is not the absence of Brain Disease. Our panellists from the Global Brain Health Institute will discuss what aspect of Brain Health they are most interested in.
GBHI Fellows:
Dr Francesca Farina is a neuroscientist an Assistant Professor at Northwestern University, Chicago, USA. Francesca is a Senior Atlantic Fellow for Equity in Brain Health.
Dr Laura Booi, a social gerontologist, is a Senior Research Fellow at Leeds Beckett University, UK and co-founder of World Young Leaders in Dementia. Laura is a Senior Atlantic Fellow for Equity in Brain Health.
Dr Khanyo Ngcobo is a Psychiatrist and Honorary Lecturer in Durban, South Africa. They are also a Senior Atlantic Fellow for Equity in Brain Health.
Dr Valentine Ucheagwu is a Neuropsychologist from Western Africa who is a Current Fellow in the Global Brain Health Institute based in Trinity College, Dublin.
Mike Hanrahan is a Musician and Writer from Ireland and is a Current Fellow in the Global Brain Health Institute in Trinity College Dublin.
Facilitated by Karen Meenan. Karen Meenan is a Senior Fellow for Equity in Brain Health at the Global Brain Health Institute based in Trinity College Dublin and is co-creator of Lewy Body Ireland. She is the Patient and Public Involvement (PPI) and Communications Lead in Dementia Trials Ireland.
Light refreshments will be provided
Whether you are just starting your journey as a care partner and are still reeling from the diagnosis or have been on the journey for a very long time and are running out of steam you will find plenty in this practical talk to make life better for you and for your relative with dementia.
Dr Sabina Brennan is adamant that self-care is sensible not selfish and in the first part of her talk she introduces the factors that can influence whether your role as a care partner can have a positive or negative impact on your health and wellbeing. She will share practical tips to help you to make adjustments to reduce your stress levels, improve your health, develop useful coping strategies and reap the positive benefits of being a care partner.
Dr Brennan then switches focus from you to your relative advocating a ‘still me’ human rights approach to dementia care. In this part of the talk she will share information to help you better understand your relative’s symptoms. Once you have that knowledge the aim really is to help you to forget the dementia and focus on the person. Dementia doesn’t stop an individual from wanting happiness, enjoyment and love. All of these are still possible once you shift focus from the disease to the person.
Dr. Sabina Brennan – Sabina is a health psychologist, neuroscientist and best-selling
author
Facilitated by:
Dr. Sabina Brennan – Sabina is a health psychologist, neuroscientist and best-selling
author
Panel Members:
Helena Quaid – Helena is a complementary health therapist who is now full time carer for her husband Kevin who was diagnosed with young onset Lewy Body Dementia at age 53.
Helena is the current chair of the Dementia Carers Campaign Network (DCCN). Helena is also a member of the Dementia Research Advisory Team (DRAT) and is actively involved in Person Public Involvement (PPI).
Susan Crampton – Susan is a member of the DCCN. She was a supporter, carer and advocate for her late Mom, Anne, who lived with mixed vascular and Alzheimer’s dementia.
Colette O’Malley – Colette manages a HSE approved intensive homecare package of 72 hours for her mum who has been living with dementia since 2017 and requires 24/7 assistance. She also assists her mum, aged 83, every other weekend as she lives an hours
drive away from her, with her dad. Colette lives with her husband and two teenagers in Dublin and works full time. She is a member of the ASI’s DCCN to lobby for those living with dementia who are reliant on their loved one to campaign for dementia specific services particularly in homecare.
Aisling Harmon – Aisling is recently retired from private practice and cares full time at home for her mother with Parkinson’s Disease and dementia. As inaugural president of the Osteopathic Council of Ireland, she lobbied at European and National level. She represents the carer voice at PPI events such as the Scottish Carers Parliament, the World Carer Conference, and steering committee of HRB funded project “Towards Resilience in Families Caring for Someone with Dementia” (2018).
Carmel Geoghegan –Carmel was a former primary carer to her mum Angela. Angela received a very late diagnosis of vascular /frontal temporal dementia and Carmel cared for her mother until the end of life. Carmel has a background in community development and has been advocating for and involved in devising innovative community responses to issues since the early 1990s. Carmel established Dementia Ireland Empowering Communities with an emphasis on education to reduce the misunderstanding attached to a dementia diagnosis and empower those affected to voice their needs, fears and be involved in the decisions that affect them.
————–
The Dementia Carers Campaign Network (DCCN) is a group of people who have experience caring for a loved one with dementia. Set up in 2013, the group aims to be a voice of and for dementia carers in Ireland and to raise awareness of issues affecting families living with dementia.
The group is facilitated and supported by The Alzheimer Society of Ireland and is overseen by a committee of current and former carers who take responsibility for driving the work of the network
Home care in Ireland is currently unregulated. There is no systematic auditing of the safety and quality of home care, neither is one authority responsible for continuous improvement in the sector. This puts service users at risk. The current Government is planning to legislate minimum licensing standards in 2023, which has the potential to transform or stifle the sector. Home Instead is Ireland’s largest private home care provider, having provided home care in the state since 2005. Employing over 3,000 people in Ireland, Home Instead has consistently lobbied for the sector to be regulated, and for a statutory right to home care to become law. Across Ireland, there are discrepancies between regions regarding the home care service people receive, this includes the allocation of hours for people living with dementia. With 14 years of experience in the sector, Michael Wright will present on the choices Regulators and Legislators have and the impact of these choices on home care recipients in Ireland.
Mr. Michael Wright – Director of Public Affairs, Home Instead Ireland
Kim Tully –
Kim joined Engaging Dementia as CEO in late 2020. She has over 20+ years of experience in diverse roles for a renowned global organisation, and enjoys working in the community and voluntary sector. Kim has a Master’s Degree in International Business from the University of South Carolina, USA.
TeamUp for Dementia Research: supporting people with an experience of dementia to participate in dementia research.
The Alzheimer Society of Ireland launched TeamUp for Dementia Research in July 2021. This service
connects people with an experience of dementia with opportunities to participate in ethically approved
dementia research in a streamlined and inclusive manner. Ciara O’Reilly will speak on the effects of the service thus far.
Cíara O’Reilly – Ciara is the Research Project Officer with the Alzheimer Society of Ireland. She supports the members of the Dementia Research Advisory Team to engage in research in a Person Public Involvement capacity, as well as carrying out their own research project.
A new dementia education programme designed by the National Dementia Office (NDO), Health Service Executive (HSE), and Dublin City University (DCU) in collaboration with people living with dementia, family carers and experienced healthcare staff from all levels of community care is currently being piloted in three HSE areas. The team worked in partnership with Irish Times Training to accredit the programme as a QQI level 5 award. It is currently being delivered through the HSE/NDO and the Alzheimer Society of Ireland. An outline of how this programme can equip Health Care Support Assistants to provide person centred optimum dementia care will be presented. This encompasses a better understanding of dementia; use of communication skills to support engagement with the person with dementia and their family; utilisation of self-care strategies; use of ethical approaches to everyday dilemmas; and applications of a strengths and wellbeing approach to caring for the person with dementia. Experiences from the pilot phase and learning’s which will inform further roll-out will also be presented. The new programme aims to develop skilled, reflective and self-aware Health Care Support Assistants who are equipped to care for people with dementia with humanity, empathy, and dignity, so that they may live well for longer in their own homes and communities
Ms. Kate Brennan – Senior Project Manager with the National Dementia Office
Light refreshments will be provided
Kevin Quaid –
Limerick native Kevin Quaid was diagnosed with Lewy Body Dementia in 2017 aged 53, after being diagnosed firstly with Parkinsons. He is a member of the Irish Dementia Working Group as well as vice chair of the European Working Group of People with dementia and co founder of Lewy body Ireland.
After his diagnosis Kevin realised there was a lack of information about his particular form of dementia and wrote a book called “Lewy Body Dementia, Survival and Me”. He was one of the first patients in the world to write a book about Lewy Body Dementia from the patients point of view as well as his families point of view, He has since written a second book called “I am KEVIN not Lewy” .
With the number of people living with dementia set to double in the next 25 years, an urgent need exists for highly skilled and educated healthcare workers in dementia care to promote quality of life and wellbeing for all concerned, including family members. In response, Leading Healthcare Providers Skillnet, have developed a new QQI level 5 supplemental award titled Certificate in Dementia Care.
Dr. Michael Brennan will discuss this programme in detail.
Dr. Michael Brennan, PhD, MA, M Ed, RPN, RNT, H Dip in Addiction Studies, Dip Social Studies.
Dr. Michael Brennan – Michael has worked in healthcare since 1992 having registered as a mental health nurse with NMBI, he started in a healthcare educational role in 2003 on achieving a Master of Science in Education. He completed a Doctorate in Philosophy in 2012, from Trinity College Dublin. Since 2017, Michael has worked as a tutor on various courses at different levels of education. This role involves coordination, teaching, assessment, supporting learners, both academically and pastorally, administration, evaluation, and ongoing programme development
A catered lunch with a selection of freshly made dishes will be provided.
There is designated space to eat, relax and network.
In Ireland, approximately 67,744 people live with dementia of which 63% reside in community settings with increasing need and subsequent care costs (NDS, DoH, 2014). An Extensive scoping review identified gaps in this complex care area particularly, at point of diagnosis demonstrating urgent service need that is sustainable and provides continuity of support and care. The Advanced Nurse Practitioner Féileacán Bán Nursing Service delivers a novel and comprehensive multi-element post diagnostic dementia pathway from point of diagnosis and throughout the journey. Service provision includes, community clinics, interactive programmes, education, advanced planning, carer support networks, home visits, crisis intervention and virtual consultation.
Ms Edel Carey – RANP, RNP, RGN – PhD Candidate, MSc, PG Dip, H Dip
The Advanced Nurse Practitioner Féileacán Bán Nursing Service, Older adult Care with a specialist focus on dementia, delirium and NCSD, Cherry Orchard Hospital and Community Healthcare Area of Dublin South, Kildare and West Wicklow.
Young onset dementia is diagnosed in people aged <65 years old. This group of people often have young families, still in employment and have financial / caring responsibilities. People diagnosed with young onset dementia can often be cared for in the home, with many dementia services providers not having the services available to this younger group of people with dementia. Children often take on caring responsibilities which has not been documented as widely as that of a partner/spouse’s perspective of caring for a person with young onset dementia.
Cathal Blake will present research findings aiming to understand the perspectives of children/young adults with a parent living with young onset dementia.
Mr. Cathal Blake – PhD Candidate, School of Psychology, Dublin City University.
Early and Young-Onset Dementias (EYOD) have
unique economic consequences, spanning work, social, family and wider society. In the case
of Dominantly Inherited Disease Dementia (DIAD) has earlier onset so implications may be
more profound. Prof. Manuel Ruiz-Adame will discuss research conducted intended to give a comprehensive appraisal of the evidence on the
economic implications related to EYOD or DIAD populations.
Prof. Manuel Ruiz-Adame – Applied Economics – University of Granada (Spain)
The Alzheimer Society of Ireland (ASI) continues to create change through policy and research to support people affected by young onset dementia (YOD). There are between 2906 and 4311 people living with YOD in Ireland. It is essential that dementia inclusive communities have the right supports, but many community groups and service providers can lack guidance on how to do this appropriately. Most recently, we commissioned a team of researchers in UCC to develop a guidance document for community groups and dementia services. This presentation will describe the next steps in moving this guidance document into practice and implementation for community groups, dementia service providers and further at local and national level.
Dr. Diane O’Doherty – PhD, MA, BA
Diane is a Research Officer at The Alzheimer Society of Ireland
Light refreshments will be provided
The Memory Technology Resource Rooms (MTRRs) were launched in 2018 offering a dedicated person-centred post-diagnostic support service for people living with dementia, families, carers and healthcare professionals. The service is led by occupational therapists who provide a holistic assessment on how dementia is impacting the individuals daily occupations. At a visit to the MTRRs the OT will provide a demonstration of relevant Assistive Technology (AT), consultation and advice on practical solutions and strategies to support and enable the person to continue engaging in meaningful and daily activities. The MTRR Network is an important part of the emerging post-diagnostic pathway for people living with dementia in Ireland. It provides continuity of care; offering practical advice and solutions and is a resource for local health care staff. In 2020 an evaluation report of the service showed the value, role and contribution the MTRRs are making to people living with dementia and their families. This presentation will provide information on some of the assistive technologies that can help people living with dementia, and insights of the service from the evaluation report.
Ms. Emma O’Brien – Senior Occupational Therapist, Memory Technology Library, South Tipperary & Clinical Lead for the National Memory Technology Resource Rooms
Dementia is often associated with reduced social connections which may result in increased susceptibility to loneliness and social isolation. Virtual reality (VR) has shown promise in increasing the social engagement and interactions of older adults living with dementia despite not being designed for this primary aim. Researchers have advocated for a focus on VR which provides opportunities to foster meaningful social connections. This research aimed to explore how a VR space can be designed to enhance and maintain the social connectedness of older adults living with dementia. Older adults living with dementia and their nominated support person had the opportunity to iteratively design the VR space. Findings revealed that social connectedness is individual and ever-changing. It is important that the VR space is designed to facilitate dynamic needs and accommodate possible changes throughout the dementia journey. VR was reported as a possible means of instigating novel interactions between older adults living with dementia and their support person which were different from daily routines.
Ms. Aisling Flynn – BSc Occupational Therapy, PhD Candidate School of Nursing and Midwifery, NUI Galway
The Smart Dementia Care project aims to establish an understanding of how best to design digital tools for care planning and goal setting for people living with dementia (PLWD) and their carers.
This presentation will look at how co-design is being used to support engagement in activities of daily living for people living with the early stages of dementia, with such engagement intended to extend the period of independent living for the individual. Co-design aims to move beyond participation by focusing on co-production, equal collaboration, and joint decision-making. An important element of co-design in this context is the development of a broad understanding of living with dementia through initial exploratory meetings and discussion with PLWD and carers. These sessions do not need to center around technology design, with inquiry instead focusing on lived, everyday experiences of participants. Holding such meetings in a focus group format with a semi-structured protocol allows for co-questioning and discussion to emerge, revealing insights, which may go uncovered within a one-to-one protocol.
The intention is that integrating personalized goal-setting focusing on individualized activities and tasks will result in a system that is useful and effective in maintaining or improving quality of life and wellbeing for PLWD.
Dr. Dympna O’Sullivan – Dympna is a Senior Lecturer in Computer Science at TU Dublin
Dr. Julie Doyle – Julie is the Director of NetwellCASALA at DkIT
Please note that the above timetable may be subject to change due to unforeseen circumstances.