Dementia Carers Campaign Network

The Dementia Carers Campaign Network (DCCN) is a group of people who have experience caring for and supporting a person living 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, and there is a committee of current and former carers who take responsibility for driving the network’s work. Network members meet online and in person to have their voices heard and influence dementia policy and practice in Ireland.

The DCCN comprises members throughout the country and is always seeking new voices. You can learn more about the DCCN’s work in the Current and Previous Work section below. If you would like to talk to us about joining the group, don’t hesitate to get in touch with Judy on [email protected].

If you or your organisation is interested in collaborating with the DCCN on a piece of work, please complete this Engagement Request Form and return it to [email protected].

• Awareness raising activities to challenge stigma and improve the understanding of dementia and the unique needs of those who support and care for people living with dementia
• Local and national media work
• Campaigning and lobbying political representatives to influence policy and funding
• Contributing to training and education programmes for healthcare professionals
• Members sit on a variety of National Steering Groups to influence public policy
• Presenting at conferences nationally and internationally
• Working with Arts practitioners to find new ways of amplifying the carer experience

Sharing The Learning

DCCN members presented at the Alzheimer Disease International Conference in London in 2022 with a focus on sharing their learning’s with other carer advocates

‘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 for family carers of Ireland’s new capacity legislation. The artwork, 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 in Ireland at the time, it was 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 the full artwork can be viewed at www.yesbutdoyoucare.ie

Events

In June 2019, The DCCN hosted an event called ‘Empowering Volunteer Family Carer Advocates’ which aimed to promote the importance of the carer voice and to showcase the value of voluntary carers in Ireland during Carers Week. Watch more about the event here

Information for family carers

The DCCN regularly works with The Alzheimer Society of Ireland’s Information Team. Members of the group have contributed to the Living Well Day to Day factsheet and Assisting with personal care factsheet.The DCCN also worked with the Dementia Information and Services Development Centre (DSIDC) to produce a series of factsheets about understanding behavioural changes in a person living with dementia.These factsheets are designed to support and inform anyone affected by dementia.  You can read and order HERE.

Steering Groups

Members sit on a number of steering groups to influence public policy, including the Dementia Understand Together Working Group and the Steering Committee for the Implementation of National Guidelines on ‘Appropriate Prescribing of Psychotropic Medication for Non-Cognitive Symptoms in People with Dementia’.

The group previously completed work with National Dementia Office Steering Groups including: Diagnosis, Post Diagnosis Pathways, Memory Technology Resource Rooms and the Advisory Group for the Draft Model of Care.

Campaigns

The DCCN is a campaigning group, amplifying the voice and concerns of people who care for a person living with dementia and working to raise awareness.

•  In 2015 the DCCN launched their first campaign on The Impact of Caring and followed this with Walk in our Footsteps in 2016.
• In 2018, the DCCN worked with their colleagues in the Irish Dementia Working Group on the issue of Diagnosis.  This joint campaign was aimed at healthcare professionals and has been delivered to GPs, Occupational Therapists and Nursing Homes where it was very well received (please see the video for the Diagnosis campaign below).
• The DCCN worked with visual artist Marie Brett and dance artist and choreographer Philip Connaughton in 2019/2020 on the ‘Yes, But Do You Care?’ art project which gave a platform to family carer experience in an innovative way to bring that experience to new audiences.
• The DCCN have been raising issues related to caring during Covid-19, the need for dementia specific homecare and political awareness of dementia funding over the past 3 years. In particular giving voice to the unique and difficult experience of caring during a pandemic and its enduring impact.

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

Helena Quaid – Chair DCCN

Helena is from Cork, she is a mom of three, step-mom of three and grandmother of seven. Helena is married to Kevin, who was diagnosed with Lewy Body Dementia when he was 53 having been diagnosed with Parkinson’s Disease two years earlier. Following Kevin’s diagnoses, Helena and Kevin have both worked to raise awareness and reduce the stigma of dementia. Helena speaks frankly about the reality of caring, the tough decisions, the challenge of self care, and the importance of preserving her own identity and not to be defined by her caring role. Helena is a Complementary Therpaist and Reiki Master, who has always taken a holistic approach to care.

Paddy Crosbie – Committee Member

Paddy Crosbie lives in Dublin and cared for his husband Derek, who was diagnosed with Young Onset Alzheimer’s Disease aged 58. Sadly, Derek passed away in November 2021. Paddy has been involved with the DCCN since it began in 2013, he has been involved in policy consultations, political advocacy, raising awareness through media and using the arts to communicate about carer issues to a wider audience. Prior to retiring early to care for Derek, Paddy worked in local government. Paddy is the Irish representative on the European Dementia Carers Working Group facilitated by Alzheimer Europe.

The DCCN is now on Twitter.  If you would like to follow us, we are on @DCCNIRL

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 2022 our Chair Helena Quaid spoke to Virgin Media News about The ASI Pre Budget Submission to government.

Also in 2022 member Jackie Golden spoke about how she and her husband Frank live as positively as possible with Frank’s diagnosis. Read the RSVP article HERE

Member, Aisling Harmon, took part in a number of media engagements during Carers Week 2021, speaking about her experiences during lockdown and the enormous strain that family carers are under.  Read article in The Irish Times HERE. Listen back to Newstalk HERE. Listen back to RTE Radio One HERE

In October 2020, our member 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 The ASI Budget 2021 campaign “Dementia – The Forgotten Crisis”, family carer Denise Monahan spoke to 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 former Chairperson Judy Williams http://www.understandtogether.ie/lets-talk-dementia/

If you are interested in joining the DCCN please email [email protected]

If you or your organisation is interested in collaborating with the DCCN, please complete this Engagement Request Form and email it to [email protected]