I welcome the opportunity to speak on the very important topic of dementia, an issue that touches so many people's lives, be it family, friends and neighbours. It reflects how we care for one another as a society, and how we support people to live with dignity, independence and security as they age. I look forward to a very engaging and constructive debate with Dáil colleagues. I know many are contributing. It shows how important an event this is. I welcome and acknowledge the presence in the Dáil Gallery of Jordan and Cian Adams, along with Helen Jolly, Cian's partner. I also acknowledge Agnes, Jordan's wife, and their dad, Glen. The brothers ran 32 marathons over 32 days during April and May, one in every county in Ireland, together with the London Marathon, where Jordan carried a fridge on his back for the entire run, to raise awareness of dementia and funds for frontotemporal dementia, FTD, research. They did this in honour of their late mother, Geraldine, who died from the disease in 2016. I have no doubt she would be proud of them, as is their dad, Glen. I commend the brothers on the tremendous effort they have put into their ongoing campaign, their personal courage and bravery, which does not go unnoticed, and the incredible spotlight they have placed on frontotemporal dementia, as well as on dementia in general. I welcome and look forward to our continued engagement. Jordan and Cian had incredible connection and engagement with all age groups, which I witnessed first-hand in the city of Limerick, and in particular with young people. That struck me. The brothers made a real and lasting impact on the general public's understanding of the lived experience and impact of dementia, not only on the person with the condition but also on their families and children. The Economic and Social Research Institute, ESRI, estimates that the Irish population aged 65 and over will increase from 780,000 in 2022 to over 1.3 million by 2040. Ageing is the biggest non-modifiable risk factor for dementia. It is estimated that there were approximately 64,000 people living with dementia in Ireland in 2020, with approximately 11,000 new cases each year. This figure is expected to rise to approximately 150,000 people by 2045, necessitating a sustained Government, HSE and societal response to keep people with dementia living as well as possible at home for as long as possible. A dementia diagnosis affects not only those living with the condition, but also their spouses, partners, children, neighbours and communities. A dementia diagnosis can be particularly difficult for people with young onset dementia, including those who may still be working and have a young family. That was very much the case with Jordan and Cian's mother, Geraldine. Good dementia care requires a whole-system response. People with lived experience and their families, clinicians, academics, voluntary organisations, statutory services and government all have distinct but interconnected roles. By working collaboratively, we can ensure that people living with dementia receive a timely diagnosis, are supported more effectively and are enabled to live as well and as independently as possible in their own homes and communities. Making Irish society more dementia inclusive is essential if we want people with dementia to maintain independence and enjoy the highest possible quality of life within supportive communities. For its part, the Government is committed to improving services and supports for people with dementia. We included specific commitments on dementia in the 2025 programme for Government to improve access to dementia diagnosis and care. We have also committed to improving data on dementia. That is something everyone agrees is a priority. Having good data is essential if we are to plan and deliver high-quality, equitable dementia diagnosis and post-diagnosis support services. In line with a commitment in the programme for Government, last May I announced the establishment of an Irish dementia registry. Full funding has been provided to develop the registry, and I am pleased to note that it is on track to come on stream in the middle of 2028. It will make an enormous difference. The registry aims to improve dementia care quality, inform service planning and policy development, and support research for people living with dementia in Ireland. For the first time, Ireland will have a dedicated system to collect reliable, consistent data on dementia, including data on assessment and diagnosis, what supports people receive and what outcomes they experience. In the programme for Government, we have also committed to rolling out more memory assessment and support services. The HSE's 2023 dementia model of care sets out a recommended service infrastructure and associated targets for the development of dementia diagnostic services countrywide. Full implementation of the model of care will ensure equitable access to dementia assessment and post-diagnosis support in all parts of the country. The model of care recommends the establishment of a national network of memory assessment and support services, regional specialist memory clinics and a national intellectual disability memory service. It also sets targets for assessment, diagnosis and review within these services. Under the dementia model of care, memory assessment and support services, MASS, provide specialist dementia assessment, diagnosis and post-diagnostic support, generally for more typical dementia presentations. Since 2021, the Government has funded the progressive establishment of new memory assessment and support services, focusing on parts of the country that previously had few or no diagnostic services. Three of these services are now operational, in Cavan-Monaghan, Mayo and Sligo, while the HSE has committed in its national service plan 2026 to progressing the opening of seven more MASS this year, in Donegal, Galway, Kerry, Limerick, Mullingar, Waterford and Wexford, respectively. Diagnostic assessment in a regional specialist memory clinic, or RSMC, is generally intended for younger, atypical or unclear presentations that require a more detailed assessment. That is very much early onset dementia. Since 2021, the Government has funded the establishment of two new RSMCs in Cork and Galway, and the expansion of the two existing RSMCs in St. James's Hospital and Tallaght University Hospital in Dublin. The HSE has committed to establishing a fifth RSMC in north Dublin in 2026. The Government has also funded the establishment of a national intellectual disability memory service, NIDMS. It is a centre of excellence in dementia assessment and diagnosis for people with intellectual disability, particularly supporting people with Down's syndrome who have an increased genetic risk for dementia. The NIDMS works in partnership with existing regional services and aims to support best quality outcomes for each person with an intellectual disability diagnosed with dementia in Ireland and their carers and supporters. There are now over 90 staff working in the diagnostic services established under the dementia model of care and all provide dementia assessment, diagnosis and post-diagnostic supports to people with dementia and their families. These services bring together multidisciplinary teams, including consultants, nurses, social workers, occupational therapists and other specialists, ensuring a comprehensive approach. In 2025, the four regional specialist memory clinics saw over 1,400 new patients and almost 5,500 returning patients. The operational memory assessment and support services saw almost 500 new patients and over 300 returning patients. As more memory assessments come on stream, we can expect the number of patients being assessed for dementia to increase significantly. In addition to developing an Irish dementia registry and rolling out more memory services, the programme for Government also commits to increasing the provision of community-based services, including dementia day care, dementia day care at home, dementia advisers and supports for people with young onset dementia. The key role of the national dementia registry is as a database, but that will be fed into by the memory assessment clinics and regional assessment clinics at local level, so we get a proper database for people with dementia. The registry will be an enhancement, as clinicians, people with dementia and the representative organisations agree. New Government funding has been allocated annually since 2021 to increase the availability of dementia community-based services, primarily through a partnership between the HSE and the Alzheimer Society of Ireland. I acknowledge the presence of ASI members in the Gallery. ASI day centres provide warm, welcoming and safe opportunities for social interaction and cognitive stimulation for people with dementia. They reduce social isolation and promote well-being among attendees. Day centres also support family caregivers by providing a break from caring responsibilities. In 2023, the Government allocated €2.1 million in funding to allow ASI day centres to return to full capacity in the wake of the Covid-19 pandemic. Three new ASI day services were funded in budget 2025 and a further five in 2026, bringing the total number to 62, with at least one now available in every county. In 2025, there were more than 80,000 attendees. Dementia services are also provided by a variety of smaller organisations around the country, including Western Alzheimers, which operates in counties Galway, Mayo and Roscommon. Since 2021, the Government has funded the provision of day care at home for people who, for a variety of reasons, cannot or do not wish to attend a day centre. This is particularly important for Jordan, Cian and Helen. Day care at home is delivered by trained care workers who provide one-to-one support to people with dementia in their homes every week in block hours. Unlike traditional home support, day care at home is activity-based, focused on providing variety, stimulation, social interaction and personalised enjoyable activities based on the interests of the person with dementia. In 2025, the ASI provided over 98,000 hours of day care at home. As of 2026, over 750 people are being provided with day care at home weekly. Western Alzheimers also provides some day care at home services. The overall budget now stands at €2.9 million. I know how important this is to people with dementia and, particularly, their families. It is something I fully understand and want to work with. Another vital community-based service is the national dementia adviser service. Dementia advisers work in every county in Ireland, providing information and signposting, as well as practical and emotional support, throughout the dementia journey, from diagnosis through to end of life. The service plays an important role in providing early intervention to prevent crises. Dementia advisers also support the person with dementia and their family in considering planning for the future, with a focus on legal, financial and care planning. Seven additional ASI dementia advisers have been recruited in 2025 and 2026, bringing the national total to 37, comprising 36 ASI advisers and one adviser employed through Western Alzheimers. ASI dementia advisers saw almost 5,000 new clients in 2025. Recognising that people with young onset dementia often have difficulty fitting into existing service provision, the Government decided in 2024 to fund the ASI to pilot activity clubs for people with young onset dementia. The funding was made recurring in 2025, and there are now 28 clubs in operation. The clubs are participant-led and provide an opportunity for people with young onset dementia to socialise together while engaging in enjoyable activities such as therapy, music sessions, gardening and social events. They support people to maintain independence, confidence and emotional well-being, while reducing isolation and promoting inclusion in communities. The HSE has made significant inroads into building awareness and understanding of dementia on the ground within communities. Dementia: Understand Together is a national campaign that promotes support, awareness and stigma reduction for people with dementia. It encourages people across society to stand together with those affected. Dementia: Understand Together works with over 60 national partners from the public, private and voluntary sectors, including businesses, academics and national community groups which are raising awareness through their branch networks. This is in addition to 2,100 community champions at grassroots levels who do valuable work locally to mobilise existing services. This morning, on the hallowed turf of Croke Park, there was a collaboration between the GAA, the HSE's Dementia: Understand Together and the five daughters of the late Sean McCague, a former president of the GAA. They are working together on dementia awareness. Jordan and Cian will be there on Sunday when a video will be rolled out. I will be attending the all-Ireland football semi-final in Croke Park, which will see the Dementia: Understand Together team join with the GAA and the family of Mr. McCague. I understand Jordan and Cian will be running around the perimeter and people will get to see what they do to promote awareness of dementia. The video will be shared with all GAA clubs across the country for further circulation among members. I commend the GAA on its collaborative approach to this. It was a positive launch in an area that is difficult for people who have family with dementia. People with dementia use a range of additional services that support older people, including day care centres. Home support is a cornerstone. The programme for Government commits to increasing ring-fenced dementia home support hours. Under the HSE's 2026 national service plan, a minimum of 22% of new home support hours will be allocated to people with dementia or cognitive impairment, up from 20% in 2025 and 18% in 2024. We will continue with that increase. The overall target for home support has increased to 26.7 million hours, with a budget of around €914 million, excluding complex home support. This is more home support hours than ever. It is nearly double the number provided in 2018. We want to continue with that. It is important that home support workers are assisted in understanding the needs of people with dementia and are trained to provide person-centred care. The Government has therefore funded the HSE to roll out a home support worker education programme across the country. There has been a successful pilot and a national roll-out is under way under the leadership of the national dementia office. I was pleased to bring the Health (Amendment) (Home Support Providers) Act 2026 through the Houses of the Oireachtas recently. It was signed into law by the President. Under the Act, for the first time in Ireland, all private, public and voluntary home support providers will be registered and regulated by HIQA and the Chief Inspector of Social Services. The aim is to improve the safety and quality of home support services by ensuring providers meet standards set by ministerial regulation. This will give the public confidence regarding quality. It is the first essential step in delivering on the programme for Government commitment to design a statutory home care scheme to allow people to stay in their own home for as long as possible. I acknowledge the work done on the Act by my predecessor, the Minister of State, Deputy Butler, and the officials in the Department. Meals on wheels is another key service used by many people with dementia. We have increased funding for the service this year by €2 million to €8.25 million. Respite care is hugely important. I know it is something Jordan and Cian have brought up. Residential respite is currently provided to approximately 8,000 people through older persons' services, while 1,200 people receive in-home respite. We recognise the significant contribution made by family carers. Government funding has supported the delivery of the carer's guarantee, providing a package of supports for family carers across all regions in partnership with the community and voluntary sector, with total funding of €3.3 million. Family Carers Ireland gets €3.14 million to deliver the emergency respite scheme and supports across five services. In this year's budget, I gave it as a defined line of funding. It is something that will be funded in its own right every year. All the funding for community-based services is supporting the delivery of Sláintecare. That is our overarching policy document in health. It has cross-party support and is the framework for the advancement of health in this country. For many people with dementia, there comes a time when living at home is no longer an option. The programme for Government commits to building more public nursing home beds and to including dementia-specific provision in all new community nursing units. We are working to progress this commitment so that there is an adequate supply of public nursing home beds to meet the needs of our growing older population. As many as 25% of patients in an acute hospital at any time have dementia and their outcomes are often poor. Government funding has been provided for dementia quality improvement initiatives in acute hospitals, so that people can receive the best possible care and be discharged with appropriate supports. National dementia services are currently preparing to implement the third national audit of dementia in acute hospitals. The audit will examine many aspects of dementia in acute hospitals, how the situation compares with the previous audits in 2019 and 2013, and provide recommendations on how to improve it. While medical advances offer hope for future diagnosis and treatment of Alzheimer's disease, there is much that can be done to reduce the prevalence of dementia through an enhanced focus on prevention and risk reduction. National dementia services and HSE health and well-being, supported by Government funding, are working on strategies to highlight the importance of maintaining good brain health in preventing or delaying the onset or progression of dementia. International research published by the Lancet Commission has shown that 14 risk factors account for up to 45% of all dementia. If we can address these risk factors on an individual, health service and societal level, we can positively impact on the prevalence of dementia. We really want to track these medical advances, which are very important, but there is an area where we can reduce the risk also. The HSE recently published an excellent brain health guide, with advice on ways to maintain or improve brain health and, therefore, reduce our risk of developing dementia. Palliative care is very important and it is very difficult for families when they get to this point. Palliative care is provided across a range of settings. To ensure the best possible delivery of palliative care in nursing homes, the Caru nursing home programme ensures that nursing home staff are trained and supported to deliver excellent care, in line with residents' and families' needs and wishes. The programme was delivered to over 3,000 staff in 2025. It helps to improve advance care planning and communication with older persons and their families, including many with dementia, to ensure a dignified end-of-life experience and bereavement support. People with dementia may require assistance with decision-making as their condition progresses. The Assisted Decision-Making (Capacity) Act 2015 establishes a modern statutory framework to support decision-making by adults who have difficulty in making decisions without help. There is also the Decision Support Service. The Assisted Decision-Making (Capacity) Act and the various types of support arrangements have particular relevance for people diagnosed with dementia. Under the dementia model of care, the aim is to promote the person's autonomy by working towards specific outcomes they have identified. Where they are unable to express or communicate their desired outcomes, their will and preferences are sought in line with the assisted decision-making Act. As part of post-diagnostic support under the dementia model of care, it is recommended that information about future planning be provided to the person and their supporter, including in relation to decision-making arrangements, enduring power of attorney and advance healthcare directives. Dementia advisers have a key role to play in this regard. This debate arose through Deputy Carrigy and, more particularly, Jordan and Cian and the impact they have had across the length and breadth of Ireland and in the UK and farther afield. The fact so many Members of the Dáil are taking part is testament to the impact they have had. In my role as Minister of State with responsibility for older people and dementia, I am committed to the continued expansion of dementia services in line with the dementia model of care. We want to continue to work in partnership with the Alzheimer Society of Ireland in a range of areas. We want to continue to roll out memory assessment clinics, regional clinics, specialist clinics, additional care in the home, day care including for those with young onset dementia, meals on wheels and respite. We want to advance in the research and medical fields also. We need to work with all stakeholders, most particularly for the families, to ensure all those with dementia can live as well and independently as possible for as long as possible in their own homes and communities, and can have access to high-quality long-term residential care if needed. A critical point is that we want to ensure that people with dementia and their families get the best supports possible at what is a very difficult time in their lives. I thank Jordan, Cian, Helen and everyone involved for being here today. I thank the FTD Brothers for what they have done to promote awareness of frontotemporal dementia, from which their late mother Geraldine passed away. I expect the debate today will be engaging and robust. We want to continue to advance supports and services for people with dementia and, more particularly, for their families. I very much look forward to engagement from all Members of the House throughout the debate.

Sentiment score: 0.35

Your grandmother was a woman of taste.

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I want to do justice to the debate. I want to deal with the issues that people raised. I want to give an idea of what my vision is on dementia. I have a vision and an actual view on what we need to do. The Minister of State, Deputy Butler, did great work in the role but there are certain things I want to do structurally. I want people to have an idea of what I have in mind. The FTD brothers, Jordan and Cian, Helen, their dad, Glenn, and Jordan's wife, Agnes, have done something unique. Every so often someone makes that impact, and they made that impact. They made it particularly with the younger cohort. I saw it with my own family. They are in their late 20s, and all they could speak about was Jordan and Cian. It is social media and everything else but they resonated and it was intergenerational. 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 is why we need the national dementia register up and running. It is critical. We need empirical data and we do not have it at the moment. That is why I fast-forwarded this last year. Second, I want the memory assessment clinics to be rolled out. Three are open and I want to see the other seven running and get more because we will get diagnosis and a structured system. The regional clinics, which are specialist, are very much in the space for young onset dementia, which is a growing area. The programme for Government includes supports for early onset dementia and the Alzheimer Society of Ireland has a key role to play in that regard. In some ways there is a contradiction in terms. With an early diagnosis, we have a better chance of ensuring people can live a good life. Kevin Quaid, a Limerick man, is in the Gallery. He is living with the disease. That lived experience is important. We then have to provide the services. The central person in this debate is the person with dementia and their family. Just because someone gets dementia does not mean they are not going to continue to live their life – they are - but we have to ensure we understand how it impacts them. We have to provide the services like respite. Home support was mentioned in the debate in a number of contributions. This was a very good, robust and genuine debate. Most people had had some connection to someone with dementia and the impact on their lives. One of the programme for Government commitments was to design a statutory home care scheme, so I sat down and looked at it. It is not something abstract. We have to do a focused body of work on it. It has to be a process. The first thing I wanted to do was get the home support providers Bill 2025 through. That is the first step. We cannot have a statutory home care scheme unless we regulate the sector. It is unregulated. We now have the legislation through. It is the first critical step in moving towards a statutory home care scheme. Deputy Connolly referred to the practical aspect. We have given the HSE funding to recruit 257 additional home support workers. I want them to be recruited and the HSE is doing that. I am having ongoing meetings with the HSE to try to reduce the number of vacant posts but it is an issue of getting the staff. They do great work. This is something we want. They need replacements but there is funding for 257 additional posts. The Alzheimer Society of Ireland, ASI, does great work. We will interact with it in the normal way in the budgetary process. We will not agree on everything - as I have said many times, if we gave the ASI everything, neither of us would be doing our jobs - but it has a key role to play. I have to operate within a budgetary system and a budgetary cycle. What the ASI has done with the day centres is brilliant. Many of its advisers are in the young onset dementia space. Day care at home is coming up a lot. I want to do more in that space. It is a great service. When I sat down and spoke to Jordan, Cian and Helen, Jordan described what it was like for them when their mother was diagnosed and the impact it had on the family, with day care at home and respite. The Minister of State, Deputy Butler, spoke about designated funding. Care Family Ireland is now a dedicated line of funding for respite. It is something we have to do. The area of new medicines was raised. That is hugely important. We have spoken about how, without the drugs, you can look at risk factors and reduce them but we are living in an age when drugs are coming on stream very quickly, thankfully. Two disease-modifying therapies for Alzheimer's disease, lecanemab and donanemab, have received regulatory approval in Europe and their manufacturers have applied to the HSE to have them considered for public reimbursement in Ireland. A full health technology assessment of lecanemab is being undertaken by the National Centre for Pharmacoeconomics, NCPE, while a full HCA submission for donanemab is awaited from its manufacturer. Deputies will appreciate that under the Health (Pricing and Supply of Medical Goods) Act 2013, the HSE has statutory responsibility for making decisions on which medicines are reimbursed from the funds available to it. The Department and Minister are not involved in this process and cannot instruct the HSE to make a positive or negative decision. Those drugs are coming on stream. In addition to these disease-modifying therapies, a blood test that was approved in May 2026 can rule both in and out Alzheimer’s disease pathology. It is intended for people who attend specialist services with symptoms such as memory problems. It is not a screening test for healthy people without symptoms. This test will be available in Ireland by the end of the year and in many cases could replace lumbar puncture as a means of confirming Alzheimer’s disease pathology. That will make a big difference. Something that came from Jordan and Cian, and more particularly from Helen Jolly, Cian’s partner, was the genetic frontotemporal initiative, GENFI. We will look at that space. No one has a fountain of knowledge. If we can work with GENFI, which is based in a London university, and become part of that research, that would be great. It is all about getting synergies; it is not about operating in isolation. We owe it to people with dementia to put that place as well as the day-to-day measures, which are so important. I attended the HSE’s Dementia: Understand Together campaign launch with the GAA and the five McCague sisters, who were speaking about their father, the former president of the GAA Seán McCague. They were speaking about their late mother, who looked after their dad, and about the impact. A couple of things came across really well there, including the fact people with dementia need to be kept involved. People may say they are afraid they will interfere. You have to work around the person with dementia and what they want. They want to be involved and to go to their local GAA or community club and to have people visiting. This is all hugely important. Studies on longevity show that a key element is connection and connectivity. A lot of people mentioned carers. We have a commitment in the programme for Government that by the end of the lifetime of the Government, the means test will no longer apply. We have made significant increases in the disregard for people receiving carer’s allowance. The work that carers do is incalculable. It is phenomenal work. In many cases they are working with people with dementia. My vision for dementia care is, first, that we support the fantastic day-to-day work of groups like the Alzheimer’s Society of Ireland, Western Alzheimer and community groups the length and breadth of Ireland. We will look at home support and then we need a dementia register and move towards statutory home care. I take Deputy Toole’s point about rolling out music therapy. We are doing work in that space. Fundamentally, the Government’s abiding objective is to ensure that people with dementia can continue living in their own homes with their families and supports. Once again, I thank Jordan, Cian and Helen for being here today. It is hugely important. There were great contributions. I look forward to our continued engagement. Collaboratively we will work to battle dementia.

Sentiment score: 0.19