Mr. John Dunne:

On behalf of Family Carers Ireland, I thank the committee for giving us the opportunity to address the health needs of persons with dementia and the services available for them.

We are pleased to be appearing with the Alzheimer Society of Ireland. We have long history of co-operation in supporting families caring for someone with dementia. Examples of our engagement on this are as follows: five of our basic online courses that cover generic caring issues are on the HSE's dementia pathways portal; we have our own basic e-learning module on dementia care; our online carer forum offers a virtual peer-support network for carers of people with dementia; and all of our crisis supports,including counselling and emergency respite, are available to carers of people with dementia.

A good deal of our research is of relevance to dementia care. In particular, in 2021, we partnered with Dr. Emma O’Shea of UCC’s Centre for Gerontology and Rehabilitation to research the factors that support resilience in families supporting someone with dementia and influence the sustainability of family care giving in the context of dementia. That report concluded that almost half of the cost of dementia care is attributable to the opportunity cost of care provided by the family and that we need to give families care options if we are going to propagate the ageing-in-place dogma, which we do support.

Following that report we collaborated with the Alzheimer Society of Ireland, ASI, specifically in researching the financial challenges facing families caring for people with dementia in Ireland, which is based on analysis of feedback provided by family carers of people with dementia as part of our 2022 State of Caring report. Generally speaking we see our core competence as rooted in the practicalities of caring including providing generic personal care. We defer to ASI on issues relating to dementia itself. In that context I am quite happy to endorse pretty much everything Mr. Heffernan has said, just for the record.

As an organisation, Family Carers Ireland, FCI, consciously focuses on the family carer precisely because too often carers do not realise until it is too late that if they do not look after themselves they will not be able to keep looking after anyone else. It is a bit like the aeroplane announcement where in case of emergency you put your own mask on first before you put it on the children because you could pass out faster than you would die. Carers need to look after themselves and be reminded to do that.

I must mention the upcoming referendum about family caring, which obviously relates to caring in all situations and not just dementia, and the need for recognition, value and real tangible supports and services to make carers' lives easier. FCI sees the referendum as important for enshrining recognition and value for family care in our Constitution. Having said that, it would have been helpful in countering widespread disappointment with what is perceived to be a watering down of the recommended wording from the citizens' assembly. I am sympathetic to the Government's view that they thought they were strengthening it but either way it is an aspirational kind of statement. It would have been nice to see some further progress on the roll out of the career guarantee during 2024 as evidence of the State's striving to support family carers.

Rather than looking at the condition, we focus on what we call the caring dyad of the carer and cared for person rather than on the condition. It is a different perspective to the one framed in the national dementia strategy. Dementia is challenging but many of the specific challenges it presents such as changing relationships, personal care, flight risk, and carer harm are not specific to dementia. They also present on a spectrum that must be calibrated alongside the internal resilience and external supports the caring individual or family can draw upon. Before she died my mother developed delirium on top of relatively mild dementia. The diagnosis made little practical difference. There is no national delirium service. For me the syndrome mattered less than the sudden and significant changes in her situation that had to be managed on a day-to-day basis.

For the avoidance of doubt, I am not arguing that our focus on the care situation is superior to the condition-based one but merely that as reflected in the effective partnership we have with the Alzheimer Society of Ireland the two are complementary. We fully support the development of a national dementia strategy but we would like to see it along with the family carers' strategy - in case it sounds like we are going for dementia - along with a positive ageing strategy, a mental health strategy and a stroke strategy all being developed in the context of an overall integrated social care strategy informed by an holistic model of integrated care focused on the changing needs of patients and their carers.

Between 2012 and 2015, the HSE and Genio co-funded four innovative local projects with a view to demonstrating how people with advanced dementia and complex needs could be enabled to live fulfilling lives in their community and to prevent avoidable residential care or hospitalisation. Among the features of the projects, they offered a 12-week intervention providing additional flexible and responsive home care hours including overnight respite and weekend cover as well as telecare devices and other technologies; it is interesting that this bit of the project was less well taken up in general. The project incorporated a dementia education programme for home support staff, an education programme for public health nurses and the adoption of the Zarit caregiver burden interview to assess carer burden. The pilot projects informed the subsequent development of a mainstream community supports model for dementia services. As an organisation we have continued to partner with the HSE in the delivery of the living well with dementia project in south Tipperary since 2015.

A key feature of the pilot programme was personalised supports based on an assessment of the person with dementia and their family carer as a single unit of care. This was a tremendously important generation from our perspective. The pilot projects, as I have mentioned, use the Zarit caregiver burden scale to assess the burden.

I will not bring the committee through the nuances of the various tools for measuring the situation of carers but I would make the point that, from our experience, focussing on burden is a perspective that risks promoting dependence rather than resilience, and we think resilience is a much better way to go in terms of promoting care sustainability.

I am happy to acknowledge that the Department is continuing to explore the best approach to assessing carer need following a recent pilot evaluation of the interRAI module in CHO 2 and we are actively engaging with it in this endeavour.

An early evaluation of the Genio initiatives noted that while the pilots focused on dementia, the learning had the potential to inform the development of many other service areas in Ireland and internationally. The failure to see this potential being realised is disappointing. We share ASI's frustration with the uneven delivery of dementia services and many other elements of our health services. This reflects a frequent lack of coherence across the health and social care system. For example, a recent evaluation of the project in Tipperary argued for additional resources for a local dementia service that is already significantly better resourced than those in the rest of that particular CHO.

In that context, I would like to conclude by repeating a concern that I have voiced to this committee before. Given the experience to date with CHOs and the even stronger focus on regional autonomy in Sláintecare, how are national services to avoid a postcode lottery in national initiatives such as the dementia service or, indeed, the carer guarantee? If we are to do that, it will require practical mechanisms and possibly a detailed service specification to each regional executive officer, and these will have to be informed by appropriate strategies. I refer back to the concept of a single integrated social care strategy that I mentioned earlier. I thank members for their attention. I am happy to answer questions in due course.