Dementia Carers Campaign Network

Who we are?

The Dementia Carers Campaign Network is a group of people who have experience caring for a loved one with dementia.  Set up in 2013 the group aims to be a voice of and for dementia carers in Ireland and to raise awareness of issues affecting families living with dementia.

The group is facilitated and supported by The Alzheimer Society of Ireland organising meetings and keeping members updated on campaigns and events. The DCCN is overseen by a committee of current and former carers who take responsibility for driving the work of the network. Members of the network are invited to attend four meetings a year. At these meetings the group discusses issues affecting people with dementia and their family carers.

The DCCN is made up of an Eastern Group which meets in Dublin and a Mid-Western Group which meets in Limerick.

In June 2019, The DCCN hosted an event called ‘Empowering Volunteer Family Carer Advocates’ which aimed to promote importance of the carer voice and to showcase the value of voluntary carers in Ireland during Carers Week. Please watch the video that captured the day (above).

You can find out more about the work that members are involved in below. If you are interested in working with the DCCN on a piece of work, please complete and return this Engagement Request Form to advocacy@alzheimer.ie

What we do?

  • Fully involved in 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
  • Contribute to numerous research programmes
  • Present at conferences nationally and internationally
  • Members sit on a variety of National Steering Groups to influence public policy
  • Lobby political representatives
  • Contribute to training and education programmes for health care professionals

The DCCN is an opportunity for you to raise awareness of what it’s like to care for a loved one with dementia and the supports people need to keep caring

Judy Williams Chairperson

Current work

  • Yes, But Do You Care?

    The DCCN, and other family carers supported by The Alzheimer Society of Ireland, collaborated with acclaimed visual artist Marie Brett to share their stories of caring for someone with dementia.The resulting artwork is a cross-disciplinary installation which re-imagines the hidden, and often challenging, aspects of caring, while exploring the possible implications of Ireland’s new capacity legislation for family carers. The piece, which combines live dance and spoken word with floor drawing and sculptural and video elements, is creatively and sensitively brought to life by award-winning dance artist and choreographer Philip Connaughton.

    The aim of this artwork is to build new audiences, to offer topical thinking and reflection space and to encourage philosophical consideration of how human rights can be promoted and protected in Ireland. Family carers who contributed to this project are very proud of this collaboration and were moved by the experience.

    The artwork was intended as a live performance in 2020, but due to Covid-19 restrictions, the piece has been re-imagined as a filmic artwork. The Irish Museum of Modern Art kindly streamed the artwork for two weeks in April 2021.

    Trailer available below and full visual artwork is now available on www.yesbutdoyoucare.ie

The carers who contributed to the ‘Yes, But Do You Care?’ artwork were moved by the experience. Watch the video below to hear about the thoughts, reflections and feelings of some of the carers involved in the project, in conversation with the artists and Dr Tara Byrne, Arts Programme Manager at Age & Opportunity.

Information for family carers

  • We recently worked with The ASI information team and the DSIDC (Dementia Information and Services Development Centre) to produce a series of factsheets about understanding behaviour changes in the person with dementia designed to support and inform anyone affected by dementia.  You can read and order the factsheets HERE.

Steering Groups

  • Members sit on a number of groups Groups being led out by the National Dementia Office Steering Groups including: Diagnosis, Post Diagnosis Pathways and Memory Technology Resource Rooms.

Campaigns

  • The DCCN also gets involves in a campaign each year.  In late 2015 they launched their first campaign on The Impact of Caring and followed this with Walk in our Footsteps in 2016.
  • Most recently the DCCN worked with their colleagues in the Irish Dementia Working Group on the issue of diagnosis.  This joint campaign aimed at healthcare professionals has been delivered to GP’s, Occupational Therapists and Nursing Homes and has been very well received.

The Impact of Caring

Caring for a loved one with dementia takes time, energy and, above all, love.  It can be a long and emotional journey but with the proper support, it can be a rewarding one too.  The DCCN aims to represent, raise awareness and campaign on the distinct needs of people who care for someone with dementia.  You can download a copy of the campaign here

Walk in our Footprints: A Dementia Carer’s Journey

This campaign highlighted the different stages of a dementia carer’s journey, sharing their personal experiences of the issues and needs that arise at each stage. You can download a copy of the campaign here

 

News from the Network

The Network is now on Twitter, you can follow them via @DCCNIRL

DCCN in the media

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

In October 2020, one of our members Máire-Anne Doyle spoke to RSVP magazine about caring for her father, Brian who had vascular dementia – Read the article HERE

In July 2020 as part of our Budget 2021 campaign “Dementia – The Forgotten Crisis”, family carer Denise Monahan spoke in The Irish Times about the impact that the closure of ASI services has had on her family – Read the article HERE

In April 2020, as the impact of COVID-19 took hold, Una Caulfield spoke to the Irish Independent about the difficulties of caring for a loved one in the midst of a pandemic – Read the article HERE

‘Let’s Talk Dementia’ radio series – This six part series, presented by Fionnuala Sweeney, looks at different aspects of dementia featuring our Chairperson http://www.understandtogether.ie/lets-talk-dementia/

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