Mr. Andy Heffernan:

I thank the Chair and committee members for the invitation to speak here this morning. By way of introduction, I will put dementia in context. It is estimated that over 55 million people are currently living with dementia and, according to the WHO, dementia is now the seventh leading cause of death and one of the major causes of disability and dependency among older people globally. In Ireland it is estimated that 64,0000 people are living with dementia and this is predicted to rise to 150,000 by 2045. Additionally, it is estimated that some 500,000 Irish people have been affected by dementia in some way.

Dementia itself is an umbrella term for a series of symptoms that cause changes to the brain. The most common sub-types are Alzheimer's, vascular dementia, mixed dementia and dementia with Lewy bodies, but there are over 400 more. It is a progressive neurological condition associated with a range of cognitive, behavioural and psychological symptoms, including memory loss, problems with reasoning and communication, and changes in personality that impair day to day living.

The difficulties faced by people diagnosed with dementia and those who provide care and support are complex and immense. Despite this stark scenario, the Alzheimer Society of Ireland, ASI, comes before the Oireachtas Joint Committee on Health with a message of hope. Our vision is an Ireland in which people on the journey of dementia are valued, can realise their rights, exercise choice and live well where they choose. We believe this vision can be realised for the following reasons.

The Department of Health launched Ireland’s first national dementia strategy some ten years ago in 2014. In recent years, the ambition set out in this plan has begun to be realised with increases in Government funding for initiatives, services and supports for people affected by dementia, together with the commitment and leadership of the Minister of State with responsibility for older people, Deputy Butler. This funding ensures our services continue to grow. In 2023, we delivered just under 126,000 home care hours and 78,000 day care at home hours. We trained 819 family carers to support their loved ones with dementia and our team of dementia advisers had 4,674 new referrals and more than 13,000 individual meetings. Our day centres had more than 63,000 attendances this year and our social clubs more than 10,000. In 2023, our helpline had 6,500 interactions. The launch of the landmark model of care for dementia in Ireland is a game-changer and its implementation will be a life-changing pathway from diagnosis to end of life. Key targets and pathways set out in the model of care, such as a network of memory technology resource rooms, memory assessment support services and specialist regional memory clinics, some of which are already in place, build on current services. There is ongoing collaboration with the national dementia services with our team, together with enhanced funding as part of the HSE enhanced community care programmes, positive links with integrated care for older persons teams and the introduction of new positions at assistant director of nursing level with a focus on dementia service improvement. In the last three years alone, we have developed innovative new services such as day care at home, rolled out community engagement initiatives and continued to destigmatise dementia. We have witnessed significant developments in research such as the funding of Dementia Trials Ireland by the Health Research Board, which aims to triple the number of clinical trials available for people with dementia in Ireland by 2026. Internationally, there are new disease-modifying therapies for Alzheimer’s disease that are expected to be licensed for use in Europe in the coming months. There are further insights and understanding regarding brain health and dementia risk reduction strategies, together with potential new diagnostic tools such as blood-based biomarkers.

However, despite the myriad reasons for hope and evidence demonstrating service and funding improvements, we know there are people throughout Ireland at the moment who are struggling and feel hopeless. We cannot forget them. The ASI conducted research involving more than 650 people undertaken in May and June last year. People with dementia and family carers reported significant challenges in accessing services. They reported an administrative burden and stress in having to fight for services and support. The research found that 63% of carers had difficulty accessing services, with 25% of those experiencing great difficulty. Of the respondents in receipt of home care, almost two thirds have experienced a delay or a reduction in the delivery of home support due to a shortage of home care workers. People living with dementia told our research team that they are grappling with low mood, isolation and loneliness, with a majority categorising their mental health as poor or fair. This echoes what many of our front-line colleagues hear on the ground. We recommend the following measures to continue to improve the experience of dementia in Ireland so that those who are struggling and facing the multifaceted challenges dementia presents can be better supported.

First, we are looking for the improvement of access to services and the plan for the implementation of the model of care for dementia in Ireland. In this regard, we need a time-bound implementation plan for the model of care and ring-fenced multi-annual funding for that implementation.

Unfortunately, the excellent plans for 2024 are being negatively impacted by the recruitment embargo within the HSE.

We must also continue to grow our own services to tackle service gaps and geographical inequities. We know that access to dementia-specific services can be sporadic, particularly in rural areas and we want to see targeted investment in the areas of greatest need.

We must address home care staffing issues. It is well established that home care delivery is extremely challenging here in Ireland and internationally. We welcome the WRC's agreement last year to move towards pay parity for section 39 workers. However, we still await its application. There is also a need to address travel issues for home care workers as well as introduce meaningful career progression opportunities.

Second, we must open up local communities to address loneliness and isolation. Loneliness is an internationally recognised public health risk. Ireland has the highest rates of loneliness in the EU, and people living with dementia and carers are even more vulnerable to loneliness. Dementia requires a societal response.

We believe continued support for the work of the HSE's Understand Together Campaign, and our own community engagement programmes, including highly successful intergenerational initiatives, in addition to developing an action plan to address loneliness and isolation in line with the asks set out by the loneliness task force, is necessary.

Third, we must fund the provision of psychotherapeutic support and education to people with dementia and carers. It is long established that people with dementia, and family carers, struggle with their mental health. Research tells us that counselling is highly effective in reducing depressive symptoms and anxiety in carers of people with dementia. Education better equips families to cope and support the person with dementia.

Fourth, we must provide sustainable financial supports to carers. Research by the ASI, and her sister organisation, Family Carers Ireland, have consistently shown that family carers of people with dementia are struggling to make ends meet, which creates stress and anxiety. As inflationary pressures continue, there remains an urgent need to enhance social protection for this cohort.

Finally, we must ensure comprehensive preparation for the application of current and future innovations in dementia care for the benefit of all those impacted. The dementia landscape is on the cusp of significant change with landmark innovations in disease modifying therapies and diagnostics. It is critical to engage with clinicians to plan for the likelihood of at least some of these innovations reaching Ireland.

There is a rapidly growing body of evidence on dementia risk reduction and prevention which must become part of the public discourse. Brain health is everybody's business.

There is excellent translational research happening in institutions across Ireland. We must support research professionals and clinicians to ensure that this research is embedded into practice.

We very much view and understand dementia through a human rights lens, and the ASI is very much led by principles of personhood and dignity. Dementia care in Ireland has taken huge strides in recent years but we are still not upholding the rights and personhood of every person affected by the condition. However, the tools are there and I think that with continued funding, and political will, we believe life can improve for people living with dementia, their families and their communities.