Ms Tina Leonard:

I thank the members for all their questions, and particularly to Deputy Mary Mitchell O'Connor for ensuring that we are represented here today. I should have said that earlier.

To come to Deputy Ó Caoláin's question first, he asked about the under 65s of whom there are 4,000 and what different needs they may have. The obvious ones are that many dementia services in Ireland fall under the older age category. That is the first point to note. There may be age discrimination or an age barrier in that regard. Indeed, the national dementia strategy opens with the assertion that everybody in dementia has to benefit from the strategy but then, as one goes to the detail, many of the elements mentioned within the health services are under the services for older aged persons. Then one begins to wonder whether there is a barrier in that regard, even within the language used within the strategy. That is a real consideration.

There are other real considerations. Those under 65 are at a different place in life. Some of them are working and we have come across those who felt they had to leave work immediately. Questions arise, such as can workplaces be supportive of those with dementia and can they change the type of work they are doing. Such persons with dementia may have dependants and then there are financial issues. Also, there is an impact on public awareness. In public awareness work that we have carried out and in talking to those with whom we work who are under 65 and who have dementia, one sometimes finds that the level of understanding or acceptance on the part of the public is less because someone is assuming dementia to be exclusively an older age issue. We have even come across situations where those in their 50s, for example, almost feel they must justify and prove somehow that they have dementia because others do not believe and are not willing to give help as easily as they would for someone who is much older. All of those issues must also be addressed.

The Deputy also asked about the eight pilot sites. These are ones separate to the four Genio living well projects that we have heard about today. They are provided under the funding available under the national dementia strategy. The national dementia strategy has over €27 million to deliver three different actions, one of which relates to the provision of intensive dementia-specific home care for which there is €22.5 million. In that regard, there will be packages in eight pilot sites, four of which are in Dublin - in north Dublin, Dublin north city, Dublin south west and Dublin south east - and in Cork city, Waterford, Limerick and Galway. As Dr. Crowe stated, these are linked to patients who are in acute hospital settings to enable them to go back to the community. No doubt it is needed, but it is a narrow focus that needs to be expanded. Dementia-specific home packages need to be available for those with dementia across the country, not only if one is in hospital but for those already in the community looking to remain in the community. That is crucially important. It is worth noting also that currently HSE tenders are for generic home care packages. There are not dementia-specific tenders. We believe dementia-specific home care is very important because those with dementia have different and specific needs.

Deputy Ó Caoláin also mentioned the geographical lottery. It is worth mentioning post-diagnostic supports there. For example, one woman with whom we work who has Alzheimer's, Helen, is just over 65, but she was under 65 when she was diagnosed. She was diagnosed in Galway hospital, and lives in Sligo. She drove home on her own, was not told where to go or whom to talk to, and then, understandably, went into a darkness and almost did not leave the house for the first ten months staring at the four walls, not knowing where to go and what to do. That is a real experience of only a few years ago. Another person with whom we work, Séamus, who lives in Dublin, is in his 70s. He also has Alzheimer's. He was diagnosed in the memory clinic in St. James's. They put him in touch with the primary care team, which linked in with him, called to him and signposted him to supports, such as our Alzheimer's café and working group and the day-care centre locally. Immediately, from day one, both he and his family were given all that information. The committee will see from those two cases the difference in being linked in to information from the start and then, as Dr. Crowe outlined, to have that support and co-ordination of care as time progresses.

In response to Senator Colm Burke, Dr. Crowe spoke about the pathway in hospitals. It is important to mention that almost one quarter of patients in hospitals have dementia and those pilot sites and the three projects to make those hospitals dementia friendly are crucial. In particular, I am thinking of one person who went into hospital where there is not dementia-specific care and the decline was immediate and quite severe. When one is aware that those with dementia can continue to thrive with dementia-appropriate and dementia-specific care, that is so upsetting to see.

I should mention as well that the ASI is represented on the dementia strategy implementation review group. The implementation review group includes not only all of the experts but a member of our dementia working group - a person with dementia - and a member of our carer's network. It is crucial that the voice of the carer and the voice of the person with dementia are there. It is part of our policy and all the work, especially all the public awareness work, we are doing right now that we hear from those who are advocating for themselves.

On prevention, which was raised by Deputy Sandra McLellan, recently we published a paper that we commissioned the Institute for Public Health to write on prevention and dementia. One will have heard about keeping healthy and heart health. It is about not smoking, not drinking much, etc. Keeping the body healthy keeps the brain healthy - low education was a factor there. When the research was analysed it was discovered that if all the related and interacting modifiable risk factors were reduced by 10%, which is a big ask, taking the 2011 figures for dementia, within one year over 1,000 cases could be avoided or delayed.

That is a huge number. We call on the Government to ensure dementia and dementia prevention are included as a public policy message across all health messages. That is to support what members heard earlier.

Regarding the delivery of services to the 9,500 people we are reaching, and that is not the total number, 5,000 of those call our helpline. That is one service we provide. A different type of service could be a social club, café, day care, home care and so on. Is it a drop in the ocean? Yes. The reason for that is that the 48,000 people we mentioned are prevalence rates. If we are in the same position as the United Kingdom, then only half of those people are actually diagnosed. Also, we do not have the money to provide more services than those we already provide. That links in to what Deputy Fitzpatrick said about The Birches, our day centre in Dundalk, and what I said earlier. Our funding from the Health Service Executive, HSE, has decreased. We cannot plug that gap with fund-raising because the gap is becoming too wide and the demand for services is growing. Therefore, what do we do? That is the stark reality.

Deputy Byrne referred to the numbers in each county. Deputy Mitchell has the number for each county. They are prevalence rates. With regard to all the numbers we mentioned, it is important to point out that we do not have a register of people with dementia in Ireland. We do not know the exact number diagnosed and where they are located. Therefore, we cannot tailor services to reach those people. That information should be available, which is another question for the future. I hope I have answered all the questions.

To conclude, individualised, person-centred care is what we in the Alzheimer Society of Ireland are advocating for and what we are about. All the evidence shows us that interventions, supports and advice at earlier stages and throughout the journey enable people to live well, which is what they want, and it is also economically beneficial.