Report on the Experiences and Needs of Former Family Carers Launched
Posted on: 29 September 2011
A report on the experience of former family carers, ‘Between worlds: The Experiences and Needs of Former Family Carers’, by the School of Nursing and Midwifery at Trinity College Dublin and Care Alliance Ireland was launched at Trinity College Dublin.
It is estimated that there are 274,000 family carers in the Republic of Ireland and while there has been significant progress made in the provision of state supports for carers, there is relatively little primary research on carers and none published on the post-caring /care transitions phase. The research that does exist points to the all-encompassing nature of informal caring, compromised earning potential and evidence of poor health and wellbeing amongst carers. These factors have ongoing significance for former carers and in the first Irish study of its kind, this research, undertaken in 2010 describes the experiences and needs of 40 former family carers. Former family carers were defined as those who cared for an ill or disabled family member at home for at least six months before they either died or moved into a nursing home or hospice. The length of time spent caring ranged from six months to 27 years and most people were caring for parents or a spouse.
Ms Marie Lynch Board Member Care Alliance Ireland, Prof Mary McCarron Head of the School of Nursing TCD and Mr Pat Kelly, Former Family Carer.
Commenting on the findings of the study, Principal investigator and Head of the School of Nursing & Midwifery, Professor Mary McCarron said: “This study, the first of its kind in Ireland, is an important first step in recognising the experiences and needs of people who are no longer caring for their loved ones. The findings identify the significant emotional, social and financial impact of the transition from being a full-time carer to one of former carer. As one participant described it; ‘you’re in no world, your pre-caring world has gone, your caring world has gone, you’re left with no world’. The findings also highlight how the skills and experiences of former carers can be an important resource within caring organisations through helping with sustaining others who are currently caring.”
In the study, former carers describe how becoming a full-time carer meant losing the life they had with all its social contacts, work and other opportunities. Subsequently, when the person they cared for died or moved to a care home, they experience further losses associated with their role and identity as a full-time carer. Losing both these worlds creates a profound sense of loss and emptiness. At the point where their ‘caring world’ has just ended carers often feel caught ‘between worlds’. They do not belong to any particular place and do not have any particular label or identity that applies to them. They experience a range of emotional reactions, such as guilt, relief and anger. These are made worse often by the feeling that they have been ‘dismissed’ and devalued by State services and this can become a barrier to ‘moving on’ and creating a new world for themselves. Other barriers include significant money problems and finding it hard to return to the workforce where previous skills for employment had been lost. The factors that help former carers to move on include family support and support from carers’ organisations. In moving on they begin to care for themselves, keep active, become involved in their community, and ‘get out of the house’. For some former carers, ‘moving on’ involves taking on other informal and/or formal caring roles giving the skills they had acquired while being full-time carers.
The former carers who took part in this study pointed out that there are no statutory health or social care services in place for former carers. This is a major issue and there appears to be a need for a formalised system of support that addresses the potential poverty trap and the risk of long-term unemployment as a consequence of opportunities lost during full-time caring. That report found that extending the Carer’s Allowance and more flexibility in social welfare regulations should be considered. There should also be a ‘toolkit’ to help prepare carers for when caring ends, with information on what to expect and where to go for help and advice. Finally, former carers know a lot about the health and social care services system and health workers in their area. They would like to be able to share this with new and current carers who could benefit from their advice and guidance.
Most local carers’ support groups are attended by more women than men but men make up 40% of carers in Ireland. They are under-represented in carer groups and other services. The male carers in the study described the support they received from self-initiated, small, emerging male support groups. The findings from the study may help carers’ organisations and state services to develop options that may appeal to male former carers.
Commenting on the research, Liam O’Sullivan, Executive Director of Care Alliance Ireland says: “For the first time in an Irish context, this research documents the unmet needs of Ireland’s former Family Carers. We in Care Alliance Ireland will do all in our power to secure suitable supports and recognition for this group of people who have given so much of themselves to their loved ones.”