What is the impact of dementia on the person’s family and who cares for the carers?

Jacinta Kelly, Clinical Nurse Specialist, Community Palliative Care Team, North West Hospice, Sligo, and Dympna O’Connell, Lecturer, Department of Nursing at St Angela’s College, Sligo, Ireland, explain the background to their longer article published in the March/April issue of the European Journal of Palliative Care.

Dympna O’Connell

Jacinta Kelly

In an earlier post published on the EAPC Blog, we talked about our study to explore the dementia patient’s journey through a regional specialist palliative care service in the Republic of Ireland from the perspective of healthcare professionals. Here, we describe the dementia patient’s journey through the specialist palliative care services from the perspective of their carers.

A diagnosis of dementia not only impacts on the individual diagnosed, but also on the person’s carer. While the significance of the carer’s role in maintaining the wellbeing of a person with dementia is unquestionable, it carries with it immense physical, emotional, social and financial strain. Chiao et al (2015) explain that dementia is a progressive illness, which requires the carer to assume increasing levels of responsibility as the condition progresses. Therefore, the imperative to care for the carers is essential, both for the carers’ own wellbeing and so that they in turn can continue to provide and promote a good quality of life for the person with dementia.

Image courtesy of the Irish Hospice Foundation.

Six carers were interviewed in this study and they all valued the specialist palliative care services for assisting them to care for their loved one in the final stages of life. One carer sent us a thank you card for inviting her to participate in the study, explaining that in her ten years of caring for her loved one with dementia, it was the first time she had had the opportunity to share her story: the first time anyone had asked her how she was coping. This tells us that there is some way to go on the road to ‘caring for the carers’.

We hope that the findings from this study will encourage further debate from healthcare professionals working in dementia care and specialist palliative care settings.


Chiao CY, Wu HS, Hsiao CY. Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review 2015; 62: 340–350.


Contact Jacinta Kelly by email.

Read the full article in the European Journal of Palliative Care

This post relates to The dementia patient’s pathway through the Specialist Palliative Care services: Part 2’ by Jacinta Kelly and Dympna O’Connell published in the March/April edition of the European Journal of Palliative Care (EJPC) 2018; 25 (2), 93-95.

If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription.

Read Part One of this article, An Evaluation of the Dementia Patient’s Journey through the Specialist Palliative Care Service (SPC) – Healthcare Professionals’ Experiences’ here.

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog.






This entry was posted in Dementia, EAPC-LINKED JOURNALS, European Journal of Palliative Care, PATIENT & FAMILY CARE and tagged , . Bookmark the permalink.

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