Statements from The Alzheimer Society of Ireland

The organisation calls decision a ‘pivotal moment’ and ‘landmark step forward’ 

The Alzheimer Society of Ireland (The ASI) welcomes the decision by the European Commission to move forward with the approval of Leqembi (lecanemab) for the treatment of early Alzheimer’s disease.  

On 15 April, the Commission granted EU authorisation for a medicine to treat mild cognitive impairment in the early stages of Alzheimer’s disease, under strict conditions. 

It is for use in people who have only one or no copy of the ApoE4 gene and who have amyloid beta plaques in the brain. It is the first such medicine to be authorised in the EU.  

The ASI is heartened by the potential for this treatment – the first disease modifying therapy for Alzheimer’s disease – to become available in Ireland, which will undeniably offer hope for many people and families affected by Alzheimer’s. 

This follows several years of research, during which Leqembi showed positive results in clinical trials.  

Leqembi is an antibody that targets the underlying biology of Alzheimer’s disease. People with Alzheimer’s have a sticky toxic build-up of amyloid, a protein, in their brain. By working with the immune system to target and break down amyloid, Leqembi has been shown to slow the progression of the disease. 

The European Commission’s decision represents a landmark step forward and pivotal moment in the treatment of Alzheimer’s disease, following decades of failed treatment development attempts.  

This is a critical juncture for the future of dementia care, and it is essential that Ireland now prepares for the swift integration of Leqembi (and next generation of treatments in the clinical pipeline) into our healthcare system, ensuring that those who can avail of this treatment are able to access it as soon as possible. 

While we are optimistic about the positive impact Leqembi will have, it is important to note that it is not a cure for Alzheimer’s Disease and will only be suitable for a small number of people in the early stages. Leqembi is a first-generation Disease Modifying Therapy with modest effects and some potential side effects. Continued investment and innovation in dementia services, support, and timely diagnosis is essential.   

 The ASI remains committed to working alongside healthcare professionals and policymakers to provide the best support for people living with dementia and their families across Ireland. 

On 28 March 2025, the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) issued a negative opinion on Ely Lilly’s application for donanemab, a drug aimed at slowing Alzheimer’s disease progression. The CHMP found that the benefits of treatment were not large enough to outweigh the risks associated with donanemab.  

Dr Laura O’Philbin, Research & Policy Manager at The Alzheimer Society of Ireland, said: 

“Of course, this news is not what we had hoped for and will be deeply disappointing for so many people across Europe, particularly as Kisunla (Donanemab) is already available in other markets including the United States, United Kingdom, China, and Japan. It is disheartening that the same clinical trial data has led to different outcomes in this context, and we will continue to monitor the situation closely alongside our European colleagues.  

“There is no denying this is a significant setback. However, research and development into other treatment options and therapies continues at pace worldwide with a strong pipeline of therapies in Phase II and Phase III clinical trials offering hope for future advancements. 

“In November, The CHMP (Committee for Medicinal Products for Human Use) recommended licensing approval for another anti-amyloid therapy, Leqembi, following an earlier rejection. The European Commission’s decision on this recommendation is expected imminently, marking a potential step forward.  

“There is no denying that disease-modifying therapies may have the power to change lives in the future, however the importance and value of high quality, person centred supports and services cannot be underestimated. The Alzheimer Society of Ireland remains committed to supporting and advocating for people with dementia and their families so they can live as well as possible for as long as possible.”

The Alzheimer Society of Ireland welcomes the appointment of Deputy Kieran O’Donnell as Minister of State at the Department of Health with special responsibility for Older People and at the Department of Housing, Local Government, and Heritage with special responsibility for Housing.  

Furthermore, Minister O’Donnell’s experience, particularly in the National Development Plan, will be invaluable in ensuring that Ireland is prepared to meet the needs of the growing dementia community, which is projected to increase from 64,000 in 2025 to 150,000 by 2045. We also acknowledge and appreciate the leadership provided by Minister Mary Butler in this area over the past five years. 

The ASI looks forward to meeting with Minister O’Donnell in the coming weeks to speak about further developing supports and services for people with dementia and their family carers, which has made significant strides in recent years. 

The ASI looks forward to helping the Government to develop and increase capacity within the dementia community in the coming years. 

The ASI also welcomes commitments to support people living with dementia and family carers in the Programme for Government, which includes many dementia-specific areas including: 

• Work with the National Dementia Services and key stakeholders to develop a National Dementia Registry to map services, identity need and the deliver equitable access to services; 

• Establish 20 new dementia-specific day care centres; 

• Include dementia specific provision across all new Community Nursing Hospitals; 

• Increase ringfenced home care hours, and funding for Dementia Intensive Home Care Packages; 

• Double funding for dementia day care at home; 

• Double the number of dementia advisers; 

• Rollout more Memory Assessment Support Services teams; 

• Rollout more early age dementia supports. 

The new Government will be crucial in advancing dementia strategy in Ireland that acknowledges the condition as a broader societal issue beyond the remit of older people. While over 64,000 people in Ireland currently live with dementia, approximately 4,000 have Young Onset Dementia, and many carers—both family and professional—face significant emotional and financial challenges that require continued support. 

We further welcome the appointment of Deputy Jennifer Murnane O’Connor as Minister of State at the Department of Health with special responsibility for Public Health, Wellbeing, and the National Drugs Strategy. In addition, we recognise the continued role of Minister Hildegarde Naughton, Super Junior Minister of State with responsibility for Disability, who has been a strong advocate for the dementia community. 

The Alzheimer Society of Ireland, CEO Andy Heffernan said:

“I welcome the appointment of Deputy Kieran O’Donnell as Minister of State at the Department of Health with special responsibility for Older People as we continue to work with Government to further develop support and services for people living with dementia and their family carers across Ireland. 

“During the general election, both Taoiseach Micheál Martin and Tánaiste Simon Harris committed to prioritising dementia care, a pledge reflected in the Programme for Government. The appointment of the new Cabinet and junior ministerial team reinforces that commitment, and we look forward to helping that team deliver in the future. These high-level appointments over the last few weeks will shape a comprehensive approach to addressing dementia.” 

Met Éireann has issued  Status Red weather warnings  for every county tomorrow, as Storm Éowyn sweeps across Ireland. 

These warnings are in place for tomorrow (Friday, 24th January), and may extend into the following days. 

As a result, The ASI’s in-person services and supports will not operate during Red Weather Alert periods. 

In addition, the National Office and all offices across the country will close tomorrow during Red Weather Alert periods. 

However, The ASI is working to still be on hand to support people during this time: 

• Our Alzheimer’s National Helpline 1800 341 341 plans to continue to operate remotely; 

• Our Dementia Advisers and Service Managers will work to provide phone support; 

• Local Service Managers will link with our service users about resumption of services. 

This is a rapidly evolving weather event. 

The ASI will assess when the red alert ends and determine when our services and supports can resume. We will keep you updated. 

Please take care during this time as, according to Met Éireann, the Storm will bring a swathe of extremely strong and damaging winds extending across the country bringing disruption. 

You can check updates on met.ie regularly, as conditions may change for the latest warnings and advisories. 

We take this opportunity to reiterate the warning from Met Éireann that everyone should stay at home and should not travel during the Status Red weather warning.

The ASI welcomes commitments to support people living with dementia and family carers in the draft Programme for Government.

The document sets out clear objectives to support the growing number of people impacted by dementia, with differing and complex needs.

The Government’s draft programme includes key measures to develop and increase capacity within the dementia sector in the coming years.

Dementia Specific:

✅ Work with the National Dementia Services and key stakeholders to develop a National Dementia Registry to map services, identity need and the deliver equitable access to services

✅ Establish 20 new dementia-specific day care centres

✅ Include dementia specific provision across all new Community Nursing Hospitals

✅ Increase ringfenced home care hours, and funding for Dementia Intensive Home Care Packages

✅ Double funding for dementia day care at home

✅ Double the number of dementia advisers

✅ Rollout more Memory Assessment Support Services teams

✅ Rollout more early age dementia supports

Carers:

✅ Continue to significantly increase the income disregards for Carer’s Allowance in each Budget with a view to phasing out the means test during the lifetime of the Government

✅ Progressively increase weekly Carer’s Payments

✅ Continue to increase the annual Carer’s Support Grant

✅ Examine how we can better support carers who are providing full-time care and attention to more than one person

✅ Examine the introduction of a Pay Related Carer’s Benefit for individuals who have to give up work suddenly in order to provide full-time care to a loved one Workforce:

✅ Consider measures to attract and retain staff in the disability sector. We will also develop a new workforce plan to address immediate staffing shortages

✅ Work with the voluntary sector through industrial relations mechanisms and other processes to progress pay issues that affect the delivery of disability services and the long-term viability of organisations within the sector

Access to New Medicines and Treatments:

✅ Increase the number of clinical trials and examine how better to support clinicians, researchers, and support staff to focus on clinical trial activities.

✅ Commit to a review of the drugs reimbursement process.

✅ Implement the Mazars Review recommendations to ensure that the end-to-end approval process is effectively resourced to provide more timely access to drugs.

✅ Investigate new methods for earlier reimbursement of certain treatments, including early access schemes for rare diseases.

✅ Work towards a more coordinated approach at European level, akin to the Benelux agreement, to leverage benefits like those achieved during the Covid-19 vaccination programme.

✅ Invest and advocate for the development and accessibility of innovative and breakthrough treatments for cancer, and other major diseases to improve patient outcomes.

Areas for Reflection:

1. Ireland’s first National Dementia Strategy was launched in 2014. A mid-term review on the progress of the strategy was published in 2018; however, a full review needs to be completed soon. It’s crucial that the new Government looks at the need for a new dementia strategy for Ireland with achievable targets.

2. While there is priority in the draft Programme for Government for the rollout of more Memory Assessment Support Services (MASS) teams, that is just one part of the overarching Model of Care for Dementia (2023), which offers a crucial pathway of care and support for so many people. The new Government must prioritise funding to resource all elements of the Model of Care for Dementia over the coming years.

3. While some reassurances have been given to work with the voluntary sector to address pay issues in the draft Programme for Government, the new Government must move quickly and effectively to eliminate the two-tier pay system for charity staff, include Section 39 employees in public sector pay agreements, and address concerns for home care workers.

A heartfelt thank you to all our staff, advocates, Friends of ASI, branch members, volunteers and supporters from all communities in Ireland for getting behind our ‘Deliver on Dementia – Make a Pledge to Keep Dementia a Priority’ General Election 2024 campaign.

Thanks also to the 265 General Election candidates and 90 TDs who signed our Dementia Pledge and committed to keeping dementia a priority in the new Government.

The ASI is very grateful too for the engagement of Minister of State for Older People Mary Butler TD who we thank for her support, understanding and funding of much-needed dementia services over the past number of years.

Also, a thank you to members of the All-Party Oireachtas Group on Dementia and especially Chair Senator Fiona O’Loughlin who has been an unwavering advocate for the dementia community in the Oireachtas.

The ASI looks forward to working with the new Government to improve the lives of those impacted by dementia across Ireland in the years ahead. The ASI will continue to actively engage with the new Government on an ongoing basis to ensure an efficient and inclusive implementation of this vision in the draft Programme for Government.

Andy Heffernan CEO

More Info: DementiaPledge.ie

The Alzheimer Society of Ireland welcomes the decision by the European Medicines Agency to recommend Leqembi for licensing approval. This follows a re-examination of an earlier decision to not recommend the therapy for approval.  We are another step closer to seeing Disease Modifying Therapies for early-stage Alzheimer’s Disease becoming available in the European Union and are optimistic that the European Commission will follow the EMA’s recommendation.  

If approved, this will mark the first Disease Modifying Therapy for Alzheimer’s Disease approved in the EU, and the significance of this cannot be underestimated.  

We are glad to see the EMA taking a cautious approach which protects people at the greatest risk of harmful side effects.  

Amid this excitement, we cannot forget the 64,000 people already living with dementia in Ireland who need services and supports to live as well as possible for as long as possible. Leqembi will only be suitable for a relatively small number of people who are in the very early stages of Alzheimer’s Disease. There are many for whom this drug will not be suitable, including those living with other types of dementia.  

Now, we must work together to accelerate efforts in Ireland to prepare for the arrival of Disease Modifying Therapies while ensuring we build on existing services and supports for those who will not benefit from them.

The Medicines and Healthcare Products Regulatory Agency approval of Leqembi (Lecanemab) in the UK marks a significant development in the treatment of Alzheimer’s disease. The Alzheimer Society of Ireland welcomes any progress in the availability of disease modifying therapies for dementia.

As the European Medicines Agency’s decision not to approve Leqembi is currently under appeal, this treatment remains unavailable in the Republic of Ireland. This highlights a pressing issue in healthcare access, where people in neighbouring countries may have different levels of access to treatment options.

At The Alzheimer Society of Ireland we believe that people living with dementia in Ireland deserve the same opportunities for treatment as those in the UK and elsewhere. The fight against dementia is a global challenge, and it is crucial that no one is left behind in accessing new and potentially beneficial therapies.

The Alzheimer Society of Ireland will continue to support and advocate for people with dementia and their families so they can live as well as possible for as long as possible. For support, please reach out to our confidential Helpline on 1800 341 341.

13th August, 2024

It is with deep sadness that we heard of the passing of Ronan Smith, a leading dementia advocate and former Chair of our Irish Dementia Working Group (IDWG) Steering Committee and The ASI Board of Directors.

Ronan was highly respected by all our staff and volunteer advocates. He was a real gentleman and had a rare gift of being a terrific listener and conversationalist.

Over many years, we were privileged to engage with Ronan as a leading advocate for the voice of people living with dementia – both in Ireland and in Europe.

We are grateful to Ronan for his work speaking publicly about living with dementia, he was a pioneer and an innovator and always encouraged new and diverse voices.

Ronan was our first guest on our AlzTalks storytelling event about dementia, in national newspapers, radio and on television, and took part in public speaking at conferences.

Ronan’s choice to be open about dementia broke down so many barriers and opened up so much understanding of dementia in Irish society.

We are particularly grateful to Ronan for his work on the IDWG Steering Group which gave the group increased prominence and supported the group’s regional development.

The ASI was very proud when Ronan joined our Board of Directors and his work on the board gave the organisation many valuable insights.

We all know that Ronan’s passing is deeply felt by everyone here at the ASI, our staff, volunteers and fellow advocates.

Ronan was one of a kind, and we are all so sorry to hear of his passing.

Our thoughts and prayers are with Ronan’s family, especially Miriam, Hannah and Loughlin.

From everyone at The ASI.

Ar dheis Dé go raibh a anam  

26th July, 2024

The Alzheimer Society of Ireland is disappointed that the European Medicines Agency did not recommend Leqembi for marketing approval. This means that the benefits were not judged to outweigh the risks. This news is not what we had hoped for – particularly as Leqembi is already available in other jurisdictions including the United States, China, Hong Kong, South Korea and Japan. The clinical trial data under consideration was the same and we are disappointed that the outcomes are different. We will continue to monitor the situation closely.  

This news is not what we had hoped for and will be incredibly disappointing for so many people across Europe. We urgently need safe and effective treatments for Alzheimer’s Disease.  

There is no denying this is a setback however research and development into other treatment options and therapies is continuing worldwide. Earlier this month, another Disease Modifying Therapy (Donanemab) received FDA approval in the United States and are hopeful that will bring better news when reviewed in Europe.  

The ASI will continue to support and advocate for people with dementia and their families so they can live as well as possible for as long as possible.