Ms Tina Leonard:

The session may be running late, but we are all delighted to speak to the committee today and we thank it for that opportunity. I represent the Alzheimer Society of Ireland. For those who are not sure about what we do, we work across the country, in the heart of local communities, providing dementia-specific services and supports. In 2014 we provided just over 1 million hours of care to approximately 9,500 people with dementia. The services we deliver include home care, day care, Alzheimer cafés, social clubs, cognitive stimulation therapy, dementia advisors, a helpline, care training and care support groups. We are also an advocacy organisation and we advocate for the rights and needs of those living with dementia and their carers. The voice of the person with dementia and that of the carer is at the heart of what we do.

They are closely involved in our work.

In 2012, only three years ago, the World Health Organization described dementia as one of the most serious social challenges facing the world today. This is a significant statement and it is against that background that I address the joint committee. As Professor O'Shea noted, the population is ageing and this will lead to exponential growth in the incidence of dementia in the coming years because age is the key risk factor. Assuming current trends will continue, the number of people with dementia, which stands at 48,000, will treble within one generation. We must also remember that 4,000 people under 65 years of age have dementia, and for every person with the condition, three others are significantly affected. Dementia is, therefore, a major social, health and economic issue. I am sure everyone present knows someone with the condition, as it extremely rare that a family is untouched by it. It is useful to provide again, in synopsis, the wider context which Professor O'Shea described.

Professor O'Shea, in outlining the cost of dementia care, pointed out that almost half the cost of care is borne by informal family carers. The largest share of Government expenditure on dementia care is allocated to long-term residential care, which is provided in the later part of the journey of those with dementia.

Dementia is a progressive illness which may last from two years to 20 years. An increasing number of people are being diagnosed with the condition in a timely manner and at an earlier stage. Cognitive ability is greater and different at the start of the journey than it is at its end. I am generalising in this respect because the journey is different for everyone. However, with 63% of people with dementia living in the community, the services required range from signposting services, providing links to local health care teams, clubs and cafés and other social facilities that allow people to be involved in society and, subsequently, day care and home care. Only much later and where absolutely necessary is residential care required. Virtually all Government expenditure on dementia care is focused on the end of the journey and only a tiny fraction of it is allocated to these other services. We ask the Government to consider how expenditure can be rebalanced to reflect reality.

The reason we all have the same message about community supports for people with dementia is that all of them and their family members express a preference for staying at home and receiving the support they need to do so. This makes economic sense because it is also the cheaper option. A recent European study, for example, showed that it was twice as expensive to provide residential care than dementia-specific home care. This is an important finding. In addition, there is plenty of expertise available to provide the services required, as Dr. Crowe explained.

The first national dementia strategy was published a little more than six months ago. While the strategy could be transformative, there are certain limitations to its implementation, not least that only three specific actions have received funding. We thank Atlantic Philanthropies, the Health Service Executive and the Department of Health for providing these funds. The three areas for which funding has been provided are general practitioner training, general awareness and specific interventions. Much more needs to be done. We want to ensure the needs that are not being met in the current system will be met in future. The current system is characterised by poor rates of diagnosis, low levels of post-diagnostic support, patchy and inequitable provision of care and a society that pushes people with dementia to the margins. The issue of stigma has been referred to by previous speakers. There is no pathway of care available for those making the journey I described, which lasts for between two and 20 years.

The two themes addressed in our pre-budget submission are, first, staying at home and, second, promoting independence at home. With 63% of people with dementia living at home, nursing home care should only be an option when the person needs a high level of care. People should not enter long-term residential care as a result of poor community-based supports. With appropriate community supports and interventions, people stay at home for longer, thus delaying the need to fund the costs of nursing home care. We call for intensive dementia-specific care to be extended beyond the eight pilot sites funded under the national dementia strategy. Funding of €22.7 million has been provided for intensive home care packages for people with dementia linked to the hospital discharge crisis. This will positively affect 500 people with dementia living in eight specific geographic areas. This funding has been provided to enable people in acute hospital settings to return to the community.

We want to promote resilience and independence at home. With approximately 48,000 people having been diagnosed with dementia, the provision of home care packages for only 500 people is a drop in the ocean. The individuals in question are a specific cohort of people who clearly have significant needs as they are already in hospital settings. We call for this pilot project to be extended to all local health regions at an estimated cost of €30.2 million.

The Alzheimer Society of Ireland is a national non-profit, dementia-specific care provider with a presence in every county. I referred to the different types of services we deliver. We have experienced a disproportionate decrease in funding from the Health Service Executive in the past seven years. As a section 39 organisation, part of our funding is provided by the HSE, with the remainder generated through fund-raising efforts. In 2008, the HSE grant covered the cost of 74.5% of our services. In 2014, the HSE grant covered only 67% of the cost of our services. The organisation requires a further €2.1 million each year if it is to return to the 2008 position. While we have continued to meet the needs of people with dementia, these needs are increasing. At the same time, our income from the HSE is reducing and we cannot assume that we can make up the difference through fund-raising. With the general practitioner training and public awareness work that is being financed under the national dementia strategy, more people will present seeking services and support. There is, therefore, a real picture of need, and funding is required to deliver it.

Staying at home is the first theme of our submission. The second, promoting independence at home, is strongly related to the first and also falls under the umbrella of community. It also links in to the contributions of Professor O'Shea and Dr. Crowe. Post-diagnostic support includes not only traditional methods of care, as these may not be suitable or desired, but additional interventions that help to maintain a person's independence. Our first recommendation for promoting independence at home is that funding be provided for a national dementia adviser service. As a result of restructuring in the Alzheimer Society of Ireland, we have been able to fund eight dementia advisers. These operate as signposters, if one likes, who link in with families to provide information on what services are available. An evaluation of this type of service in the United Kingdom found that it plays a significant role in enabling people with dementia and carers to re-narrate their lives and find a new life that has meaning, value and purpose. Our eight dementia advisers deliver a service to almost 2,000 people. We would like to extend this service to each county and estimate that it would cost €1.56 million to do so.

Dr. Crowe referred to teams linking up with people with dementia in the community. In this context, we make a recommendation that centres on case management and collaborative care. Evidence shows that a case management approach in the community reduces the likelihood of institutionalisation, increases independence and so forth. One of the priority actions in the national dementia strategy is for a primary care worker to play a key role in co-ordinating the care. We estimate that providing a case worker in all local health areas would cost slightly less than €2 million.

To conclude, people with dementia and their families want to stay in the community. This represents the truth of the situation, yet most of the Government's spend is weighted towards the end stage and long-term residential care. We need to look at how we are going to address the real needs of people with dementia in the community. The measures I outlined to the committee would significantly improve the lives of people with dementia and support the implementation of the national dementia strategy.

We are asking for political leadership on this issue. There is a world dementia council as well as G7 leadership and we hope that there will be cross-party political leadership on this issue in Ireland.