15th International Dementia Conference Two Day Programme

CEO Kim Tully will welcome attendees to the 15th International Dementia Conference.

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 is enjoying her move into the community and voluntary sector. Kim has a Master’s Degree in International Business from the University of South Carolina, USA. 

Minister Mary Butler will officially open the event. 

Minister Butler is Minister of State at the Department of Health with special responsibility for Mental Health and Older People. She is a TD representing the Waterford Constituency. Mary served as a Councillor having won a seat in the 2014 Local elections in the  Comeragh area before contesting the 2016 General Election after securing the Fianna Fáil nomination for Waterford. She also had the honour of being the first female Fianna Fáil TD to be elected for the party since 2007. In the 2020 General Election, Mary was delighted to be re-elected to continue her work representing the people of Waterford City and County.

Charlie will talk about his lived experience as someone diagnosed with dementia in 2019. He will discuss how it impacts his everyday life, and share lessons he has learned to support himself within his community of Mallow. In particular, he will detail the help and cooperation of the Crystal Dementia Care Team, and how community supports such as dementia-inclusive cafes and social days out have allowed him to remain active in his community.

(this session is prerecorded)

Prof. Cahill will discuss human rights within the context of dementia. In particular the areas of:

• Changing demographics and dementia prevalence rates worldwide and in Ireland
• Different models for understanding of dementia
• Value of understanding dementia as a disability and a human rights concern
• The application of a Human Rights-Based approach for practitioners
• Meaning of a Human Rights-Based approach for policy-makers
• Future directions in dementia care in Ireland

Professor Suzanne Cahill has a Bachelor’s and Master’s degree in Social Science from University College Dublin and a PhD from the University of Queensland Australia. She has over 35 years experience working in aged care and dementia services and is recognized nationally and internationally as a commentator and expert on dementia matters. She is an Adjunct Professor of Social Work and Social Policy at Trinity College Dublin. She also holds an honorary Professorship in Dementia at the CESRD in NUI Galway and is an Affiliated Professor of Health and Welfare, at the Institute of Gerontology, Jonkoping University, Sweden. She is the author of the book titled: Dementia and Human Rights and another book titled: Perspectives on the Person with Dementia and Family Caregiving in Ireland.

Short break

National Coordinator for Dementia: Understand Together Fiona Foley, will be joined by Dementia Champion Fiona Crotty, and member of the IDWG Kathleen Farrell to discuss the new dementia inclusive community symbol.

Dementia: Understand Together is a coalition response that aims to build understanding about dementia and create an Ireland that embraces and includes people with dementia and their families: a key priority action of the National Dementia Strategy. The campaign is led by the Health Service Executive and supported by people affected by dementia, national partners, and local community champions, who are taking actions to create inclusive communities. To visually connect action that is being taken across Ireland, representing the culture change around dementia, we developed a dementia inclusive symbol that will act as an overarching symbol of solidarity, inclusivity and support for people living with dementia and be a sign that communities, businesses and services are working towards being dementia inclusive. The symbol was created in consultation with people with dementia, their families, national partners and local community champions, members of the public and the Dementia: Understand Together working group.

Fiona Foley joined the team of the National Dementia Office in March 2022 as Senior Project Manager “Dementia: Understand Together”. 

Fiona Crotty has worked with Tipperary County Council for 27 years and in the Community Economic and Rural Development since 2016. Within her role as Administrative Officer she is the Tipperary Age Friendly Programme Manager, supports the Tipperary Local Economic and Community Development Committee (LCDC) Health and Wellbeing through Healthy Ireland and Sláintecare Healthy Communities Programme.

Kathleen Farrell is 70 years old. In 2021 Kathleen was diagnosed with Lewy Body Dementia with Parkinson’s. Since her diagnoses Kathleen has decided to speak openly about living with Lewy Body Dementia. Kathleen joined the Irish Dementia Working Group in 2022 and has decided to become an advocate for other people living with dementia. Kathleen hopes by sharing her stories and experiences the future for other people being diagnosed with dementia in Ireland may improve.

Gemma O’Donnell is the Dementia Adviser for the South Tipperary Region. She will be joined by Ann Marie O’Dwyer, Marguerite Keating and Teresa Normile to discuss their experience of setting up and running a community dementia café. 

Tipp Town Dementia Café Steering Committee Members:

Standing Left to Right:

• Elaine Wilkinson, Advanced Nurse Practitioner,HSE, Cashel Memory Clinic (diagnostic services),
• Teresa Normile, Community Development Co Ordinator, Knockanrawley Re-source Centre,
• Ann Marie O’Dwyer, Volunteer, Knockanrawley Resource Centre.

Seated Left to Right:

• Marguerite Keating, Irish Dementia Working Group, The Alzheimer Society of Ireland,
• Gemma O’Donnell, Dementia Adviser South Tipperary, The Alzheimer Society of Ireland.

(This session will be prerecorded)

There are many music experiences available for people with dementia and their family caregivers living in the community. However, distinction between these experiences is often blurred and choosing an appropriate music experience can be a challenge. This presentation provides an introduction to how music-based interventions and music therapy can support people with dementia and their family caregivers living in the community.

Dr. Lisa Kelly is a music therapist from Co. Galway and is the co-founder of Anam Music Therapy, a social enterprise which aims to provide accessible music therapy to those who need it most. Lisa graduated from the MA Music Therapy in 2020 with a first-class honours. She recently completed her PhD in April 2023 which explored how telehealth music therapy can support people with dementia and their family caregivers living in the community.

Break for lunch

Nancy will provide a brief history of the Validation Method as developed by Naomi Feil and discuss her personal experience with validation as a practitioner and researcher with 18 years experience in a memory day centre, in particular to how it transformed her work. Through her talk she will also demonstrate how Validation involves integrating skills and beliefs, as well as 3 techniques that can be immediately applied to practice.

Nancy Brown is the Deputy Director for Communications at the Validation Training Institute.

Nancy Brown has 18 years experience in dementia care in a memory day centre serving all levels of cognitive impairment. As a practitioner-researcher and specialist working with older adults living with advanced dementia, she is also a PhD candidate in dementia studies at the University of Edinburgh and the research centre ECRED. She is a Certified Validation Teacher and conducts webinars, workshops, and private consultations for professional staff, volunteers, families, and caregivers. Nancy serves as Communications Chair for the Non-Pharmacological Interventions interest area of Alzheimer’s Association International; and, Executive Committee member of SDRC (Scottish Dementia Research Consortium).

Emma O’ Brien, Kerri Malone, Orla McDonnell and Kate Hanlon deliver this presentation as an introduction to The Supportive Memory Guide eBook and to share key aspects of the eBook, how to use it and where to access it.

This guide has been created by occupational therapists to provide useful tips and practical strategies to empower people with early stages of dementia to create protective routines and systems. The eBook provides a range of advice covering topics on scheduling and planning, developing helpful routines and creating supportive environments to engage optimally. The eBook suggests easy ways to adapt smartphones, tips on managing medication, and potential uses of smart home technologies along with information on simple home technologies. These can make participation in everyday activities easier and compensate where memory and cognitive changes have impacted on the person.

The supportive review and feedback from the Dementia Working Group and a range of healthcare professionals is greatly appreciated and provided valuable input towards the publication.

Emma O’Brien is a senior Occupational Therapist for the Memory Technology Resource Rooms in Ireland

Orla McDonnell is a senior Occupational Therapist in Louth Primary Care

Kerri Malone is a senior Occupational Therapist in Louth Primary Care

Kate Hanlon is a multi-media specialist working with eHealth & Disruptive Technologies

People with dementia benefit from a palliative approach to their care, and in some instances, from input from Specialist Palliative Care. However, many do not receive this type of care. The Model for Dementia Palliative Care Project aims to develop a model to organise the service-delivery of palliative care to people with dementia and their families who are living at home in the community. This presentation will share results from the project, including evidence for core activities of dementia palliative care, and present the current draft model. 

Dr Siobhán Fox is a Lecturer and Senior Postdoctoral Researcher in the Centre for Gerontology and Rehabilitation in University College Cork.

Her research interests include the optimisation of palliative care for people with dementia. She has published multiple peer-reviewed articles, book chapters, and presented at international conferences on this topic. Dr Fox is project manager on the Model for Dementia Palliative Care Project (2017-2022).

Short refreshment break

Niamh and Amy will provide an overview of reminiscence therapy and the benefits that have been found for people with dementia. We will be touching on research points here. In particular, they want to highlight their own story on reminiscence therapy. They will give an overarching view of the ForgetMeNot App, how it works and how it can be used as a means of practically managing the symptoms of dementia. The team’s aim is to raise awareness of not only the app itself, but also the power and importance of reminiscence therapy for individuals living with dementia. 

Niamh Murray and Amy Boyden are Co-Founders of the ForgetMeNot App.

The ForgetMeNot App acts as a personalised and bespoke digital memory book for people living with dementia. The idea was borne from their personal experience caring for their loved ones living with dementia. For many years, Niamh and Amy used photographs, storytelling and music to communicate with their family members living with dementia. Little did they realise that at practice they had been doing for years was actually the basis of a body of research known as reminiscence therapy. The app features three main tools: photos,music and voice recordings which provide a simple means for family members and carers to practice reminiscence therapy, a practice with proven benefits in reducing agitation and stimulating brain activity.

This presentation will deliver practical information to people living with dementia and their support person or family carer. It will be based from Helen’s 20+ years working in the field of Older Person’s Services and will detail the fundamental aspects of transitioning from home to supported care.  

Helen holds a MSc in Dementia Studies and is a dementia champion in her local community as well as having personal lived experience of caring for her own father who had vascular dementia.  

Helen Walsh is a RGN working as an ADON for the past six years in older person services Mayo. She trained in London, and staffed there for six years moved back to Mayo where she worked in SGH and then moved into older person services where she has been for the past 20+ years. 

Michael Wright, Director of Public Affairs, Home Instead Ireland will be looking at the present and future of home care in Ireland. 

Michael will compare and contrast HSE Home Support Packages to the services of Private Home Care and look at home support issues prevalent in Ireland today. He will discuss what changes may we see and how could these impact the future of dementia care.

Michael Wright, Director of Public Affairs, Home Instead Ireland

Helen will be introduced by Kevin Quaid.

Dementia care giving follows a long, sometimes rocky path, but by taking your hand and guiding you through her 35 years of care giving her family members and mentoring those in her Lewy Body Dementia community, Helen will share the lessons she’s learned to ease the journey.

Providing practical steps to understanding, building a support system, tips for self-care, resources, and the wisdom gained expressed through the voices of her fellow caregivers as well as her personal journey. 

In addition to care giving other diseases, for over 30 years Helen was the primary caregiver and health care advocate for two generations of her family who lived with Parkinson’s Disease with Lewy Body Dementia.

Currently, she is a support services volunteer and the facilitator of a Lewy Body Dementia Association (LBDA) affiliated caregiver sup-port group in Northern California, a trained LBD caregiver peer mentor, a member of the University of California–San Francisco Memory & Ageing  Centre’s Family Advisory Council, a member of the Dementia Community Research Advisory Panel at the Global Brain Health Institute, and Patient and Public Involvement Chair (PPI) for the ISTAARTPIA: Partnering with Research Participants. In 2021, she was federally appointed one of two caregiver representatives to the NAPA Advisory Council on Alzheimer’s Research,Care, and Services under the U.S. Dept. of Health and Human Services making recommendations to the HHS Secretary and Congress, and recently was named the 2022 LBDA Volunteer of the Year.

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. He is also the author of two books: “Lewy Body Dementia, Survival and Me”, and “I am KEVIN not Lewy”. 

Kim Tully will provide closing words for the first day.