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 of dementia with members throughout Ireland.

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 group is supported by The ASI and their work is overseen by a Steering Group comprised of people living with dementia.

Covid19 has meant that the group has met exclusively online since March 2020. The ASI has supported members to build their capacity to use technology to continue their advocacy work.

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 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 particularly our corporate partnerships ambassador roles for events such as 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 Request for Engagement to Clodagh Whelan, Advocacy Engagement and Participation Officer clodagh.whelan@alzheimer.ie

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
  • 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

 

Campaigns

  • 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 – Members were involved in the most recent  Alzheimer Society of Ireland Pre Budget Submission and are currently consulting on the next submission. 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. 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 

Projects

  • Rights Made Real – Human Rights project funded by The Irish Human Rights and Equality Commission. Tender document – IHREC Tender Irish Dementia Working Group
  • Diversity and Inclusion: During 2020 the group actively 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 2021 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: http://https://www.youtube.com/watch?v=XMI6hIpbJ4s
  • 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

 

Sean Mackell – Chair

Sean Mackell was born in Hilden, County Antrim in 1953. The second of 4 children Sean studied at Queen’s University, graduating with a Bachelor of Arts in 1976 and then an MSc in 1981.

Sean was a Trade Union official for all his working life. He represented workers in the public service in both the north and south of Ireland for many years before becoming General Secretary of the Guinness Staff Union in 1990. Sean retired in 2016 after 40 years’ service in the trade union movement.

Sean lives with his wife Mary and they have 6 children and 11 grandchildren.

Dublin Gazette Sean Mackell Dec 2020

Sean was diagnosed with Alzheimer’s in 2018 and with Mary’s encouragement became involved with The Irish Dementia Working Group (IDWG) supported by The Alzheimer Society of Ireland almost immediately. Sean says ‘being involved in the IDWG has been very good for me and hopefully I make a positive contribution to the work of The Alzheimer Society of Ireland. I always bring a ‘can do’ attitude with me’.

Sean’s professional experience as a Trade Unionist means he knows the power of the collective voice, during his term as Chair he is seeking to welcome new and diverse members to the group.

Helen Rochford Brennan – Member and Irish representative 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 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’. 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 – Vice Chair
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.

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