THE LIVED EXPERIENCE OF CARER RESILIENCE TOLD BY CARER ADVOCATES

Abstract Ref: 
0146

Laura Reid1,Aisling Harmon2
1The Alzheimer Society of Ireland, Dublin, Ireland
2Dementia Carers Campaign Network, Dublin, Ireland

Background: Established in 2013 this network of volunteer family carers is a national
advocacy group that presents a vital opportunity for carers to use their voice to raise
awareness of issues affecting families living with dementia in Ireland. The network is
facilitated by a dementia specific service provider.
These carer advocates wish to present on a piece of qualitative research they have recently
conducted on the topic of carer resilience at the advanced stages of caring for a loved one
with dementia.

Methods: There are 43 family carer advocates on the network, all of whom were invited to
participate in this research.
The piece of qualitative research conducted by the network with its members took the form
of a questionnaire.
The research sought to ascertain how informed and supported carers felt as their loved ones
transitioned to long term residential care and the stage thereafter. This research did not discuss the level of professional care given to their loved one but
what supports and services were offered to the carer at that time and how this affected their
resilience.
The aspect of caring for a loved one availing of hospice care naturally emerged during the
research process and this topic was also explored in relation to carer resilience.
Completed questionnaires were analysed to show findings and draw conclusions.
Results: The research gives insight into the lived experience of carer resilience told by carer
advocates. The results show that carer advocates feel ill-informed and badly supported as
their loved one transitions to or resided in long term residential care.
The research also showed that carers feel more informed and supported if their loved one
availed of hospice care rather than long term residential care.
Conclusion: Carers are not properly informed or supported when their loved one
transitions to or resides in long term residential care and this negatively affects their
resilience.