“With the support of Féileacán Bán and the carer network, I don’t feel alone anymore” -family care partner

A new book examining the experience of dementia care partners using the Health Service Executive’s Féileacán Bán Nursing Service has been launched, in partnership with the RCSI (Royal College of Surgeons in Ireland) Faculty of Nursing and Midwifery, in Dublin. 

Féileacán Bán: The story behind the service which supports the older adult living with dementia and their family, by advanced nurse practitioner Edel Carey, charts the journey of carers supporting dementia in the community.

Carey founded the HSE Féileacán Bán (White Butterfly) Nursing Service in 2022 to provide targeted support from the point of diagnosis for patients and their families. She is a leading advocate for person-centred, rights-based care for those living with dementia.

Approximately 64,000 people in Ireland are living with dementia. Almost two-thirds live at home supported by family, friends and their local community.

This vital introduction to life with dementia reveals the lived experience of many of the care partners that Carey has supported. 

The book contains moving and honest testimonies from dementia care partners about their reactions to a loved one’s diagnosis and the complex feelings and changing relationships that follow. This short, accessible primer points readers to the positive supports available through Féileacán Bán, including community links, memory lounges, carer support networks and acute services.

Featuring practical advice on how to deal with guilt, fear and loneliness, as well as guidelines on how to communicate with those living with dementia, this book is an important resource for Ireland’s large dementia partner community. 

Funding for the project came from RCSI’s Faculty of Nursing and Midwifery Clinical Bursary Award.   

“I am immensely proud of the journey I’ve taken in developing Féileacán Bán within my advanced practice role in the Health Service Executive (HSE),” says Edel Carey (RGN, RNP, RANP). “This book is more than just a resource; it represents the voices of family care partners who have felt unheard for too long.

“It is my hope that this initiative not only empowers caregivers but also fosters a sense of community and understanding around dementia, reminding families that they are not alone on this journey. I would like to sincerely thank everyone for coming to the launch and for your ongoing support in making this vision a reality.”

Dr Mary Boyd, Dean of the Faculty of Nursing and Midwifery, RCSI, said: “We are proud to support this important project through the RCSI Faculty of Nursing and Midwifery Clinical Bursary, which is awarded each year to support nurse and midwife-led initiatives in healthcare delivery and to strengthen the contribution of nurses and midwives to population health.”