In this #HumansCare story, we are talking to Liam O’Sullivan, Executive Director of Care Alliance Ireland. Care Alliance Ireland is the national network of voluntary organisations supporting family carers in Ireland and a member along with Carers Worldwide of IACO, the International Alliance of Carer Organisations.
We spoke to Liam about the particular challenges facing carers in Ireland and how Care Alliance Ireland work to support them, about the Family Carers Online Support Group that they set up at the start of lockdown last year and about the role of online vs offline support in the future, amongst many other things…
Hi! Please tell us a little bit about yourself. How did you come to work for Care Alliance Ireland? What makes you so passionate about caring?
I grew up in Dublin, Ireland and have lived here all my life, although I was lucky enough to have the opportunity to travel in my youth. I have been at Care Alliance Ireland for 17 years and before that my background was in social work. I would love to say that I was passionate about caring before I got the role, but really I didn’t know much about it. Now with hindsight I appreciate the care provided, in my case, by my uncle who cared for my grandmother, who had dementia. And now I am passionate about it. I really enjoy the work and it’s so important. When you think of how caring touches so many people at certain stages of their lives and that there’s a good chance we’ll all be caring in the future – that’s what makes me passionate. It’s important for societal wellbeing that we have family carers, but also that we support them throughout the life cycle of caring.
“It’s important for societal wellbeing that we have family carers, but also that we support them throughout the life cycle of caring.”
Can you tell us a little bit about caring in Ireland and the particular challenges facing carers there? How are the challenges for carers in Ireland similar/different to those for carers globally?
There was some interesting data published by the Central Statistics Office in December last year, that identifies just under half a million family carers in Ireland. That’s about 1 in 8 of the Irish adult population and closer to 1 in 5 women in their 40s and 50s. The challenges for carers in Ireland are similar to those of carers across the world – isolation, high risk of anxiety, depression, feeling taken for granted in significant numbers.
Covid-19 has accentuated all this. Family carers have kept people safe and well throughout the pandemic and in Ireland, unfortunately, they’ve not been prioritised for the vaccine which is contrary to many countries across the globe. This is a battle we appear to have lost which is disappointing. It’s a lost opportunity to pay a level of additional acknowledgement to carers by prioritising them for the vaccine.
“It’s a lost opportunity to pay a level of additional acknowledgement to carers by prioritising them for the vaccine.”
Tell us more about Care Alliance Ireland and how you work to support carers.
We are a small not for profit, with a staff of five. Our work in the past has focused on policy and research submissions and we have also led and coordinated a national Carers Week, a model we borrowed from the UK. More recently we have entered the space of online carer support. Initially this was through a Facebook page during national Carers Week. We were always interested in the opportunity that an online carers support group presented and were thinking about how we might go about setting one up, and then back in March 2020 at the start of the first lockdown, the time felt right and we went for it and set up what’s become a really successful online carer support group.
There is a whole suite of supports and interventions associated with the group, such as quizzes, gardening clubs, drop ins, and the beauty of it is that if you have reasonable internet access you can take part in all these activities. You don’t need to live near a resource centre or a carers’ support centre, you can partake remotely and for those who are introverted, it seems to work better for them too. It’s been a great challenge and a great experience. We have volunteers, many of whom are carers, and we’ve been able to appoint someone to manage the project into the future.
We’ve also been involved in lobbying and campaigning for family carers to be prioritised for the Covid-19 vaccine, to make sure they weren’t forgotten about through the pandemic. Many carers feel they haven’t been given adequate support during this time, especially when all the services they were used to were taken away overnight.
You set up the Family Carers Online Support Group, via a private Facebook group, at the start of the lockdown last year. Tell us more about it and how it has helped family carers when the services and support they usually access was shut down due to the pandemic.
We have nearly 2,700 people in our Family Carers Online Support Group who engage regularly and get involved in the activities, and we have had some wonderful qualitative feedback. People have reported that the group has got them through this last year, that they don’t know what they would have done without it. We’ve had feedback saying that it’s been inspirational, amazing, that the peer support is so powerful and impactful.
We are currently working with a PhD student from the University of Limerick to explore the meaning it has to members of the group and look forward to publishing that in the not-too-distant future.
As Covid-19 emerged, the support services closed overnight and that was a real blow for so many people and these support services have yet to come back in significant numbers. Although there has been good work over recent years in the area of dementia cafes and carer support groups, 91% of our Family Carers Online Support Group members reported that they hadn’t been involved in these. That’s telling us there is an unmet need and a need that can be met in part online at such good value.
“Many many thanks for creating this support group. I, like many family carers, can feel rather invisible and isolated.” – Facebook group member
How do you see the role of online vs offline support developing in the future?
They certainly complement each other, but there is definitely no going back to where we were. When face-to-face support reopens, yes I believe that some people will go back, but others will think that they are getting good support online and that the face-to-face support just isn’t for them. It’s a great opportunity and we’re very keen to explore the impact and efficacy of such online intervention, because there’s emerging evidence that the online peer support piece can be as beneficial as face-to-face support.
Can you tell us three key changes Care Alliance Ireland has been able to bring about for carers?
Coordinating Carers Week for the last 15 years has definitely moved the dial a bit in terms of recognition for carers, albeit specifically around a week in June, but I think that hopefully has a more longer-term impact.
We have also been significant in protecting the income supports for carers and indeed increasing them. 12 years ago, when things did get very tough, we managed to largely protect the income supports for some full-time carers. Many aren’t in receipt of an income support for various reasons, largely due to means testing, but for those that were getting the supports we were successful in protecting them and expanding the scope of some to a degree.
Finally, due to our work, we are seeing in policy documents and research, more and more discussion around family carers as partners in care. There is more research being done in the area of caring and the idea of public patient involvement in research includes looking at the idea of family carers as experts in care. We have also been developing the concept of ‘carers assessments’ which has been rolled out in the UK and elsewhere but really hasn’t taken hold yet in Ireland.
What role does Care Alliance Ireland play internationally in raising the profile of carers?
We’ve been privileged to be able to support Eurocarers in its establishment back in the early 2000s and then more recently support the international carers movement through my role on the board of IACO, the International Alliance of Carer Organisations: we have been able to implement some good structure and governance. I volunteered as treasurer of IACO and through this enabled IACO to do some useful work and collaborations and seek to develop relationships with organisations outside of the English-speaking world. There is a lot of work still to do in that regard, notwithstanding the cultural differences and the definition and understanding of caring, and we have to be very conscious that we don’t seek to export a white EU centric perspective of what caring is.
How essential do you think a Global Carers’ Movement is in achieving recognition and support for carers?
Yes, it is very important. It’s about relentless incrementalism, so growing the movement in collaboration with well-run organisations across the world including Carers Worldwide, Carers UK, the National Alliance of Caregivers – the list goes on. Clearly there are gaps in terms of Central and South America, some states and governments have difficulties with outside NGOs seeking to affect change within their country and so there are geopolitical challenges. Not every country is run democratically, so how they might welcome an embryonic carers’ movement is not clear. We have to collaborate and show that it would be a win-win, but ultimately there are some countries that don’t do a lot to support family carers. Some of that is cultural, but it’s more than that I think, so it is important that there is a strong carers’ movement and I look forward to IACO 2.0 as it were, to be part of that.
What are your ultimate hopes for carers in the future?
People often care out of choice and they want to care as well as they can and have no regrets at the end of it. But on that journey sometimes it can be hurtful and damaging. Damaging to their health, their emotional wellbeing, their capacity to earn an income into the future. So I’d like to see people supported more in their caring, whether that’s by other family members or the state, and to feel that they have done well.
And at the community level, I’d like to see an increase in appreciation for the contribution people make to caring for a relative: for a child with special needs or a partner with a mental health condition, or an aging parent. I’d like to see more recognition. And what does recognition mean? It means you don’t have to explain what you’re doing, it’s understood by your neighbours, by your family, by the health and social care services. It means that you’re treated with dignity and with respect and given the support you need.
“And what does recognition mean? It means that you’re treated with dignity and with respect and given the support you need.”