Irish Dementia Working Group
The Irish Dementia Working Group are a group of people living with dementia who advocate for better services, supports and policies in Ireland.
Who we are?
Members of the Irish Dementia Working Group attending the launch of The Alzheimer Society of Ireland Pre-Budget Submission 2019
The Irish Dementia Working Group (IDWG) was set up in 2013. It is an advocacy group of people living with dementia. The group is an independent campaigning voice for the lived experience with members throughout Ireland.
The group meet to share experiences and highlight issues that are important to them. It is a space to do something proactive and positive and bring purpose to life after diagnosis. The IDWG is working to improve life for people living with dementia throughout Ireland. The group is supported by The ASI and their work is overseen by a Steering Group comprised of people living with dementia. The IDWG is made up of an Eastern Group which meets in Dublin, a Southern Group which meets in Cork, a Western Group which rotated locations and a South Eastern Group meeting in Kilkenny. There are approx 40 active members.
What we do?
Video above of the first National Meeting of the Irish Dementia Working Group September 2019
The IDWG is involved in a wide range of work and activities including:
- Monitoring the implementation of Ireland’s first National Dementia Strategy
- Awareness raising activities to fight stigma and improve the understanding of dementia including local and national media work
- Presenting at conferences nationally and internationally
- Sitting on a variety of National Steering Groups to influence public policy
- Influencing the internal work of The Alzheimer Society of Ireland for example through the recruitment and induction of new employees
- Member of the European Working Group of People with Dementia, Ireland currently holds the position of Chair for this group
- Lobbying political representatives
- Contributing to training and education programmes for health care professionals
- Supporting the fundraising work of The Alzheimer Society of Ireland particularly our corporate partnerships and Chair Kathy Ryan is an ambassador for the Camino Fundraising Trip.
The IDWG is involved in many wide and varied pieces of work that are outlined below. If you are interested in working with the IDWG, please complete and return this Request for Engagement to Clodagh Whelan, Advocacy Engagement and Participation Officer firstname.lastname@example.org
Steering groups that members currently sit on include the following:
- a number of Steering Groups being led out by the National Dementia Office Steering Groups including: Diagnosis, Post Diagnosis Pathways and Memory Technology Resource Rooms.
- National Dementia Cafe Project co-ordinated by Engaging Dementia
- The Dementia Registry Project led by DCU which will improve national knowledge and data on the prevalence of dementia in Ireland.
- Understand Together a public support, awareness and information campaign aimed at inspiring people to stand together with people who have been affected by dementia. You can find out more about the campaign here
- Involvement of people living with dementia – The group collaborated with The Centre for Economic and Social Research on Dementia at NUI Galway and The Alzheimer Society of Ireland on Hear Our Voice! Guidelines for Involving People with Dementia in policy, advisory, consultation and conference activities. You can find more information HERE and read the guidelines HERE
- Political Advocacy – The Steering Group sent this open letter to Fianna Fail and Fine Gael in response to the Government Framework Document. Read here; Open Letter 24th April 2020
- IDWG members campaigned on the issue of diagnosis with their colleagues in the Dementia Carers Campaign Network. This joint campaign aimed at healthcare professionals has been delivered to GP’s, Occupational Therapists and Nursing Homes and has been very well received. Watch here
- The Working Group focused on travel in 2019, linking with the team at Irish Rail to improve the ability of people living with dementia to travel by rail.
- The group took part in the Abbey Theatre 5×5 programme and worked with a theatre company Bow Productions to explore the complexity of living with dementia at our National Theatre. Watch how they got one here and here
- Members completed a project with Human Resources team in The ASI, focused on informing the recruitment and induction of new staff.
News from the Group
IDWG in the media
Meet the members
We would like you to meet some of the members that make up the IDWG
Kathy Ryan – Chair
Kathy was diagnosed with younger onset Alzheimer’s in January 2014 at the age of 53. Kathy is a mother to two boys (21, 23) and lives in Cashel Co. Tipperary, Ireland. She has two dogs Bella and Juno who keep her busy! Kathy is a passionate advocate for promoting the mental health and wellbeing of all. She got involved in advocacy work because she wants to break down the stigma and create awareness of dementia.
At present Kathy travels all over Ireland; she sits on National Steering Groups, participates in research, and speaks at conferences and to many healthcare professionals. In January Kathy went to Bulgaria to collect a European award on behalf of the IDWG. The day of the award ceremony marked 4 years since her diagnosis and Kathy commented that at that dark moment she would never have imagined the opportunities that being part of the Irish Working Group have opened up. Most recently Kathy presented at the Alzheimer Europe conference in Barcelona which is attended by over 900 delegates.
Helen Rochford Brennan – Member and current Chair European Working Group of People with Dementia
Helen is the current Chair of the European Working Group of People with Dementia and is the group’s nominee to the Board of Alzheimer Europe; she is former Chair of the IDWG and continues to sit on the steering group. Helen is on the Monitoring Committee of Ireland’s first National Dementia Strategy, she is also an Alzheimer type of Dementia Consultant and a Global Dementia Ambassador.
Helen lives in Tubercurry in Sligo with her husband and is a Mum to one son living in London. Helen campaigns to raise awareness of dementia through a rights based approach, speaking at international conference’s, gives many media interviews, engages with pharma, scientists, clinicians, educators, students and many research projects from developing evidence –based diagnosis to palliative care.
Helen was diagnosed after a five year struggle with Early Onset Alzheimer’s at the age of 62 and has since written very personally about living with the Alzheimer type of dementia, this year she has contributed to two books on human rights. She hopes her participation in research will one day help find a cure and better quality of life for people living with dementia.
Kevin Quaid – Vice Chair
Kevin is a native of Limerick and was diagnosed with Lewy Body Dementia in 2017 aged 57. He is an avid GAA fan and speaks about the fighting spirit of the Limerick hurling team and the fact they never gave up. He brings that same spirit to his life with dementia. Kevin is married to Helena and has three children, three stepchildren and four grandchildren. This family man is an adventurer who spends time in Australia and loves to travel.
After his diagnosis Kevin realised there was a lack of information about his particular form of dementia and wrote a book ‘Lewy Body Dementia, Survival and Me’. He is now an active advocate and raises awareness about the condition through speaking engagements and media appearances. Kevin and Helena recently took part in The Alzheimer Society AlzTalks event and they are eager to show how a dementia diagnosis affects the whole family not just the person diagnosed.
Jacinta Dixon – Member Eastern Dementia Working Group
Jacinta is 70 years old and was diagnosed with Alzheimer’s in 2016. She lives in Clondalkin in Dublin and has three children and 6 grandchildren. Jacinta lived in East Africa for 25 years and spent 11 years working for the Disability Federation of Ireland (DFI) on her return to Ireland. Jacinta wants to continue to live well and be part of her community despite her diagnosis. She enjoys collecting her grandchildren from school, likes to go supermarket shopping locally and take regular walks. She also enjoys hiking, reading and the outdoors.
Since her diagnosis, Jacinta feels that she receives wonderful support from her family and the local community; however she believes that many members of the public do not fully understand what dementia actually is. Jacinta has recently participated in a number of awareness raising events in order to tackle this including The Alzheimer Society of Ireland AlzTalks event in Sligo.
She also took part in the Big Life Fix television programme which brought awareness to the struggles of living with dementia and explored how technology can support independence.