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 are we?
Members of the Irish Dementia Working Group July 2022
The IDWG members 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 ASI supports the group, and their work is overseen by a Steering Group comprised of people living with dementia.
The group meets in person and online, and The ASI supports members to build their capacity to use technology to engage in advocacy work.
What do we do?
Video above is a National Meeting of the Irish Dementia Working Group September 2019
The IDWG is involved in a wide range of work and activities including:
- Awareness raising activities to challenge 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 and sitting on project teams
- Member of the European Working Group of People with Dementia
- Lobbying political representatives
- Contributing to training and education programmes for health care professionals
- Supporting the fundraising work of The Alzheimer Society of Ireland and ambassador roles for significant campaigns such as Tea Day
- Engagement with arts practitioners to share the experience of dementia in new and innovative ways
The IDWG is involved in many wide and varied pieces of work that are outlined below. If you are interested in joining the group , please contact Saoirse Kelly, Advocacy Engagement and Participation Officer at [email protected]
Steering groups that members currently sit on include the following:
- Steering Groups being led out by the National Dementia Office including training development
- National Dementia Cafe Project co-ordinated by Engaging Dementia
- Dementia; 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
- Political Advocacy – Members were involved in the most recent Alzheimer Society of Ireland Pre Budget Submission, they contributed to both the content of the submission and the campaign. You can read more HERE Members also lobby politicians to keep dementia supports on the political agenda and in April 2020 The Steering Group sent this Open Letter to Fianna Fail and Fine Gael in response to the Government Framework Document.
- 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
- 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
- Rights Made Real 2022 – Human Rights project funded by The Irish Human Rights and Equality Commission.
- Diversity and Inclusion: The group has reached out to marginalised groups to welcome a more diverse membership. The Steering Group completed training with LGBT Ireland to improve their understanding of the specific issues affecting older members of the LGBTQI+ community. This work continues in 2023 with a focus on engaging with members of the Black, Asian, Minority and Ethnic groups.
- The Working Group focused on travel in 2019, they commissioned research on travel and dementia, engaged with the National Transport Authority and linked with the team at Irish Rail to improve the ability of people living with dementia to travel by rail. You can see the work here
- Members 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 on here and here
News from the Group
The IDWG is now on Twitter, you can follow them via @IrishDementiaWG
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.
Chair of the IDWG and Irish representative European Working Group of People with Dementia
Kevin is a native of Limerick and was diagnosed with Lewy Body Dementia in 2017 aged 53. 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’, and has recently published a book called “I AM Kevin NOT Lewy” and it’s a book of hope for everyone who has received a diagnosis of some type of dementiaHe is now an active advocate and raises awareness about the condition through speaking engagements and media appearances. . Kevin was nominated to represent Ireland on the European Working Group of People with Dementia in October 2022 for a second term and was elected Vice Chair of the group. Kevin is a strong voice for people living with dementia in Europe.You can order a copy of Kevins new book HEREIn December 2021 Kevin gave the Opening Speech, Resilience in Dementia at the 31st Alzheimer Europe Conference. To watch Kevin’s speech just click on the link belowhttps://31aec.alzheimereuropevirtual.org/event/member/697965
Helen Rochford Brennan
Helen Rochford-Brennan is a Global Dementia Ambassador, she is former Chair and current Vice Chair of the Irish Dementia Working Group and former Chair of the European Working Group of People with Dementia. Helen is on the Monitoring Committee of Ireland’s first National Dementia Strategy and is a panel member of WHO Global Dementia Observatory Knowledge Exchange.
Helen lives in Tubercurry in Sligo. Helen’s husband Sean who was hugely supportive of Helen’s advocacy work sadly passed away in late 2020. Helen 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 . She hopes her participation in research will one day help find a cure and better quality of life for people living with dementia.You can read Helens opening address to the Alzheimer Europe Conference 2019 HERE Helen spoke at the Alz Talks event in Cork in 2017 and you can watch back HERE
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. You can watch Jacinta at The Alzheimer Society of Ireland AlzTalks event in Sligo.