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Welcome to the fourth Care Alliance Research & Policy E-zine. You can read previous editions of the e-zine here. If you have any comments or would like to learn more, do get in touch (

Research Focus
“20 Years of Family Carer Research in Ireland”: Call for Papers

Care Alliance Ireland was established in 1995 to act as an umbrella organisation for organisations that support Family Carers directly. In the course of those 20 years, there have been significant policy developments for Family Carers, recently and most notably with the publication of the National Carers Strategy in 2012. Primary research in this area is currently being undertaken in Ireland across a range of disciplines and third-level institutions.

The time is right to bring together all this research and share it with a wide audience of interested parties. A review of historical research is also timely.

A one-day conference will take place on Friday 20th November and the date will coincide with International Carers Rights Day. The theme of this conference is “20 Years of Family Carer Research in Ireland”.

Full details are available on the Care Alliance website. The call for papers can be downloaded at this link

Informal enquiries should be directed to Policy & Research Officer Zoe, by email ( or by phone (086 883 4942).
Family Carer Research Group meeting to take place

Following the successful reconvening of the Family Carer Research Group in June 2015, the next meeting will take place on 14th September from 10 am to 1 pm in The Carmichael Centre, Dublin.

The group affords researchers and interested parties working in the field of family care an opportunity to share and discuss their work with others. It also creates networking opportunities to facilitate stronger working relationships between members of the not-for-profit sector.

At this meeting we will hear updates on several current projects, including the collaborative project between Dr Stephen Gallagher and his team in University of Limerick and Care Alliance Ireland on the topic of benefit finding for Family Carers. (Information on that project can be found here.)

If you wish to attend the meeting on 14th September, please RSVP to Zoe (

UCD & Care Alliance Ireland to partner on new research

Care Alliance Ireland are delighted to announce a new research partnership with UCD and other collaborators, including St Vincent's University Hospital, on a project entitled "Towards resilience in family caregiving for people with dementia".

The project is funded by the Health Research Board and will be led by Professor Gerard Fealy and a team of researchers from the UCD School of Nursing, Midwifery and Health Systems. The project will focus on the development and promotion of resilience in Family Carers of people with dementia. The findings of the study will provide important new evidence on carer resilience and will inform policy, carer supports and interventions.

We anticipate that the project will commence in the autumn, and we will be bringing you updates from the project in coming editions of this e-zine. All enquiries should be directed to Dr Attracta Lafferty, UCD (

Care Alliance creates research sub-committee

As part of Care Alliance’s ongoing commitment to supporting primary and applied research on Family Caring and the role of Family Carers, a new research sub-committee of the Board of Directors of Care Alliance has been formed. This sub-committee, chaired by board member Deirdre Shanagher (Development Officer with The Irish Hospice Foundation), will ensure that research which is undertaken and supported by Care Alliance is of high quality and will have a positive impact on the lives of Family Carers. The task of the sub-committee will be to review research proposals, submissions, research reports and any other materials related to research associated with Care Alliance. The terms of reference of the group are available to read on our website.
Making the Respite Care Grant a pro-rata payment

The Respite Care Grant is a key component of government support for Family Carers in Ireland. With major reductions in the rate of the Respite Care Grant in previous years (although these have stabilised), Care Alliance Ireland are calling for a return to 2012 rates for Budget 2016. Dr. Caroline Crowley recently released a paper calling for the payment to be paid on a pro-rata basis, in contrast to the existing "12 months or nothing" approach of government. 

The full paper can be read here. You can contact Dr. Crowley via email at

Policy Update
Budget 2016

In preparation for Budget 2016 in October 2015, many of our member organisations and other groups have been preparing and publishing their Pre-Budget Statements. The Care Alliance Pre-Budget Statement is available on our website, and we are calling for (among other key points) the full restoration of the Respite Care Grant – a call echoed by many other groups across the sector.

Here are links to some of the Pre-Budget Statements of other organisations which seek to address the concerns of Family Carers. If you have any queries in relation to these, please contact those organisations directly.

Care Alliance Ireland

Disability Federation of Ireland 

Alzheimer Society of Ireland 

Neurological Society of Ireland  

Active Retirement Network Ireland 

Acquired Brain Injury Ireland 

Review of the Nursing Homes Support Scheme – A Fair Deal

On 20th July 2015, the Department of Health published a document entitled “Review of the Nursing Homes Support Scheme, A Fair Deal”. Care Alliance welcomes the report, noting that for many Family Carers and those they care for, this scheme is an important element of their care planning into the future.

In particular, we welcome the assurances that there will be no increase in the contributions expected from care recipients and their families – which will ease the minds of many people in need of care, and their Family Carers. There is greater acknowledgement of the need and desire for an increase in community care – although there is no real sense of how that is to be achieved. A focus on the administration of the scheme should ensure that the scheme is easier to access in the future, as should higher levels of information and better communication for applicants and their families.

The full review is available to read on the Department of Health website.

International Perspectives
Research Paper: “Health and wellbeing in informal caregivers and non-caregivers: a comparative cross-sectional study of the Swedish general population” (Berglund et al., Health and Quality of Life Outcomes, 2015)

The health impact of being a Family Carer is well documented, and includes impacts on physical, mental and emotional health. In a paper recently published in Sweden (and available here), a large-scale dataset was investigated with regard to self-reported health measures.

Data from the annual “Health on equal terms” national public health survey in Sweden was used to investigate instances of poor health within the carer and non-carer populations across Sweden.

Statistically significant differences in responses were seen in the majority of cases between the carer and non-carer populations. Caregivers reported lower general health, lower psychological wellbeing, more days with “poor physical health”, and more days lost work capacity (where carers were in employment).

The results of this research are similar to research carried out in Ireland, in particular research undertaken by Care Alliance in 2008. It is clear that the health impact of caring for a family member in their home continues to be of concern, both nationally and internationally.

Research Report: Caregiving in the US

Recently published by the National Alliance for Caregiving and the AARP Public Policy Institute in the US, “Caregiving in the US” (2015) outlines key demographic and other data collected using interviews conducted online. Interviews were carried out with 1,248 adult caregivers (18+) who provide some level of unpaid care to an adult.

The report gives a comprehensive overview of caring in the US including data on gender, education, age, etc. of carers. Also included is information on the health, financial and social impacts of caring for a family member, which are broadly comparable to the Irish situation. Key points of interest include:

•    Approximately 17% of American adults are caring for an adult.
•    75% of US carers have been caring for less than 5 years.
•    Nearly half (48%) of care recipients live in their own home.
•    59% of carers assist with an Activity of Daily Living, with half of these carers finding this very difficult.
•    Two-thirds of carers monitor the health of the person they are caring for, and the same number communicate with health care professionals regarding the health needs of the person they care for.
•    50% of carers advocate with providers, services and agencies on behalf of the care recipient.
•    Only 14% of Family Carers have received training to undertake some of the complex medical tasks needed when providing care, with over 60% of carers providing 21 or more hours a week doing so with no training.

Although the research did not include information from those carers caring for a person under 18, nor indeed from carers under 18, the data contained in the report will be useful to researchers undertaking international comparisons. The executive summary of the report can be found here, with the full report available here.

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