Kieran O'Donnell: Clear Plan for Dementia Care

Thanks very much Cathaoirleach, and I want to do justice to the debate. So, I want to deal with the issues that people gave rise to, and I want to give an idea what my vision is on dementia. Because I have a vision, I have an actual view on what we need to do. Mary Butler did great work in the role, but there are certain things I want to do structurally. And I want people to have an idea of what I have in mind. So, firstly, the FTD brothers, Jordan and Cian, and Helen here as well, and our dad Glenn, and Jordan's wife Agnes. You've done something very unique. It comes along every so often, but someone just makes that impact. You made that impact. And as I said earlier, you made it particularly with the younger cohort. That young, I saw it with my own family. One of them came home to me in their late 20s, and all they could speak about was Jordan and Cian. Social media and everything else, but they resonated, and it was intergenerational. Issues that came up. So, what do we want? Our ultimate objective here is to ensure we look after people with dementia and their families. Where do we look after that? At diagnosis level? That's why I want the National Dementia Register up and running. It's critical. We need empirical data. We do not have it at the moment. That's number one. That's why I fast forwarded it last year. Number two, I want to see the memory assessment clinics rolled out. Three of them opened. I want to see the other seven. I want to get more. Why? Because we get diagnosis, and we get a structured system. The regional, which are the specialist clinics, they're very much in the space for young onset dementia, which is a growing area. In the program for government itself, which ASI have a key role to play, we want to enhance the service for people with young onset dementia. In ways, there's a contradiction in terms. If we get an early diagnosis, we have a better chance for people to ensure they can live a good life. Kevin Quaid is up in the gallery. Kevin is living with it. He's a limerick man to boot, but he's living with it. It's that lived experience. We then have to provide the services. The one thing that has come across, the central person here is the person with dementia and their family. Just because someone gets dementia doesn't mean they're not continuing to live the life they are. We have to ensure that we understand how it impacts. We have to provide the services like respite, home support, chemo, and a number of contributors. The one thing that came across, this is a very, very good, robust, genuine debate. Most people here had some connection with someone with dementia in terms of the impact on their lives. When I came in, one of the pro forms of commitment was around designing a statutory home care scheme. I sat down and I looked at it. It's not something abstract. It's something we have to do a focused body of work on. It has to be a process. The first thing I wanted to do was to get the Home Support Providers Bill through. That is the first step. We cannot have a statutory home care scheme unless we regulate the sector. It's unregulated. We now have the legislation through. It's the first critical step in moving forward a statutory home care scheme. That's number one. Number two, it has come up on a practical level. Deputy O'Connor, you made reference to it, right? I want the HSE, we've given them additional funding to recruit 157 additional home support workers. I want to see them recruit it. They're doing it. I have very ongoing meetings with the HSE to try and reduce the numbers. It's an issue in terms of staff. They do great work. It's something we want, they need to replace it, but there's 257 additional. I wanted to, as well, ASI do great work and we'll interact in the normal way in terms of the budgetary process. We won't agree on everything. As I've said many times, if we agree on everything, neither of us will be doing our jobs. But there's a key role to play and I have to operate within a budgetary system and a budgetary cycle. Obviously, what you've done in terms of the day centres, brilliant. Young Onset, Dementia, many of your advisors are in that space. The day care at home is something that's coming up in a big way. Want to do more in that space. Great service. It's coming across, when I sat down and spoke to Jordan and Cian and Helen, but Jordan brought it up in particular. What it was like for them when their mother was diagnosed and the impact it had on the family. Day care at home, respite. In the budget this year, specifically, and Minister Butler made reference to designated funding. Funding for respite, the care of family Ireland, is now a dedicated line of funding. Because it's something that we have to do with. One of the things that came up as well with people was the area around new medicines and in that space. That's hugely important. We've spoken about without the drugs that you can look at the risk factors and we can reduce it. But we are living in an age of drugs coming on screen now very quickly, thankfully. Looking to future, two disease modifying therapies for Alzheimer's disease. I hope I'm pronouncing these correctly. Lacanabab, doncanabab. They've been received relatively approved in Europe and the manufacturers have applied to the HSE to have them considered publicly in Boston and Ireland. A full health technology assessment of the lacanabab is being undertaken by the National Centre for Pharma Economics, the NCEPE, when a full HSEA submission for doncanabab is awaited from its manufacturer. Under the Health Pricing Supply Medicines Act 2013, HSE starts to be responsible for making decisions in which medicine is reimbursed from the funds available to it. The Department of Minister are not involved in this process and cannot instruct the HSE to make a positive or negative decision. Those drugs are coming on screen. Secondly, or thirdly rather, in addition to these disease modifying therapies, a blood test was approved in May 2026 that can both rule in and rule out Alzheimer's disease pathology. Attended the people who attend specialist services with symptoms such as memory problems and it's not a screening test for healthy people without symptoms. This process will be available in Ireland by the end of this year and in many cases could replace lumbar puncture as a means of confirming Alzheimer's disease pathology. That will make a big difference. Big difference. We're also looking at, and it came really from Jordan and Cain, but more particularly from Helen Jolly, Cain's partner, in terms of Gemphie. We're going to look at that space and no one has a fountain of knowledge. We can work with Gemphie, which is the London University, in that space and become part of that in terms of research. It's all about getting synergies. It's not about operating in isolation. We owe it to people with dementia to put in place, apart from the day-to-day, which is so important. I was at this morning with the understanding of dementia, the HSE understanding together, with the GA, the HSE itself, and more particularly the five MacCaig sisters, speaking about their father, former president of GA, Sean MacCaig, speaking about their late mother who looked after their dad, and just the impact. A couple of things came across really well. People with dementia are kept involved. People may say that they're afraid they'll interfere. You have to go and work around the person with dementia. What do they want? They want to be involved. They want to go to a local GA club, their local community, people visiting. These are all hugely important. If you look at studies in terms of people with longevity, one of the key elements is connection and connectivity. CARES came up for a lot of people here today. We have a commitment in the Department for Government that over the lifetime of this government, we look to that the means test will no longer apply. We've done significant increases in the disregard for people now that are receiving CARES loans. The work that CARES do is incalculable. It's phenomenal work. In many cases, they are working with people with dementia. My vision around dementia care is, number one, we do the day-to-day, which is the fantastic work Alzheimer's Society do, the likes of Western Alzheimer's, community groups to length and breadth of Ireland. We look at home support. Then we need to put structurally the dementia register and moving towards statutory home care. Fundamentally, the key focus here is to ensure the government, and I take Deputy O'Toole's point about we are doing work in that space for all the people with music therapy. Abiding the objective is to ensure that people with dementia continue to live in their own homes, with their families and their supports. Once again, can I thank Jordan and Cian and Helen for being here today. It's hugely important. Great contributions. Looking forward to our continuing engagement. Collaboratively, we'll work to basically fight and battle dementia. Thank you all very much.