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 who have been diagnosed 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 Mitchelstown in Cork and a Western Group.

What we do?

The IDWG is involved in a wide range of work and activities including:

  • Monitoring the implementation of Irelands first National Dementia Strategy
  • Awareness raising activities to fight stigma and improve the understanding of dementia including local and national media work
  • Contributing to numerous research programmes
  • 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 our Vice Chair Kathy Ryan is an ambassador for the Camino Fundraising Trip.

Current work

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 Engagement Request Form to Clodagh Whelan, Advocacy Engagement and Participation Officer clodagh.whelan@alzheimer.ie

Steering groups that members currently sit on include the following:

  • The Dementia Registry Project led by DCU which will improve national knowledge and data on the prevalence of dementia in Ireland.
  • Members sit on 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.
  • 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

Research

  • Contributed to a research study undertaken by University College Cork (UCC) on Loneliness and Dementia to examine the psychosocial impacts of diagnosis.
  • Helen Rochford Brennan contributed to the ERC Voices project which explored self-determination and aimed to change the law in relation to the right to legal capacity for people with disabilities.
  • Working with UCC on a project to examine best practice in palliative care and dementia

Campaigns

  • Throughout the year 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.

Other

  • The group have completed a project with Human Resources team in The ASI, focused on informing the recruitment and induction of new staff. Their induction video is now in use across the organisation.
  • Chair Ronan Smith serves as a Director on the Board of The Alzheimer Society of Ireland.
  • The group is seeking a theatre company to support, plan and facilitate the 5×5 week at The Abbey Theatre from June 10th to 14th inclusive. More information here

News from the Group

  • Helen Rochford Brennan was recently awarded an Honorary Doctor of Laws by NUIG to mark her contribution to the human rights of people living with dementia throughout Europe. She accepted the honour on behalf of those affected by dementia.

IDWG in the media

You can find out more about the work and lives of members of the IDWG through interviews and features they have recently given on TV, radio and press

Meet the members

We would like you to meet some of the members that make up the IDWG

Ronan Smith – Chair
Ronan was diagnosed with Younger Onset Alzheimer’s in 2014. Ronan was born into a theatrical family and acted as a child in RTE’s Tolka Row and in various feature films. He is the son of distinguished Dublin theatre impresario, the late Brendan Smith, and is married to actress Miriam Brady, who starred in Glenroe. Having studied law after school, Ronan qualified as a solicitor but immediately gave into the genes, developing a steady career as an actor and director, before, over the years, turning to management and production.

After his diagnosis, Ronan continued to work in Dublin theatres and was particularly involved in the Gaiety Theatre. Ronan cared for his father when he developed Alzheimer’s 30 years ago and was active in the then newly formed The Alzheimer Society of Ireland. He is a strong advocate and passionate about representing the voice of the person with dementia. Ronan is currently the Chair of The Alzheimer Society of Ireland’s Irish Dementia Working Group (IDWG), a member of the Understand Together Steering Group and an in-demand public speaker. In December 2017, The Alzheimer Society of Ireland announced that Ronan would be the first person with dementia to join its Board of Directors.

Kathy Ryan – Vice 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.

Opening Address 2019 FINAL 17.10.19

Kevin Quaid – Member Southern Dementia Working Group
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 68 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

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