Dr. Caitríona Crowe:

I thank the Chairman and I am delighted to be here. I am a consultant in old age psychiatry in south Tipperary and I lead a project called The Five Steps to Living Well with Dementia. It is a very innovative project and we are delighted to have the opportunity to present it to the committee today. As Professor O'Shea said, dementia is a huge problem now but it is going to be a much bigger problem when the population with dementia trebles by 2041. To put this in context, I ask members to step into the shoes of one of our patients. Perhaps they can imagine being an 80 year old woman looking after an 82 year old husband with dementia. He has been up all night, trying to get dressed and go home to his own mother, whom he believes is still alive, and when morning comes, both husband and wife are exhausted. Whom does she turn to or whom can she ring, and, if she rings someone, can they do anything to help? That person and that scenario are part of our wish to transform things.

As HSE staff, we understand just how difficult the health service can be to navigate, even for those working within the service, so we can imagine how difficult it is for an 80 year old carer to know where to go to find real help - not just a listening ear but someone who can do something to fix the problem. These are the people who have been at the heart of our project, and it is their experiences we have been trying to change.

We were very lucky in 2012 when we were awarded funding of €700,000 over three years to design new ways of supporting people with dementia. It was unimaginable for us, as clinicians, to get that funding from Atlantic Philanthropies and the HSE through a charity called Genio. We had to compete for that funding but we were one of four sites chosen nationally. We were given that funding to go away and make a difference. One of the big things they wanted, which really appealed to us, was that people with dementia and their carers would be at the centre of all that planning. It was a very novel way of doing business. We were all the table - people with dementia, carers, HSE staff, HSE management and voluntary bodies. It was a completely new way of doing business, from the bottom up. It was a matter of looking at what was already there and what was needed. The aim was to design a better way of doing things, and there was the money to do it. In our wildest dreams, that would not happen in anyone's career, so it was a huge joy to us all to try to make things better, because anything we could do would be better than the situation at present.

Professor O'Shea talked about the statistics, which are frightening. We are not doing a great job with the 48,000 people we have at present and we really need to do things very differently in order to make things better. Over the years, as clinicians, we gave a lot of thought to what might work better and we did a lot of service development. I set up the old age psychiatry service in south Tipperary, the geriatricians set up geriatric medicine and, jointly, we set up a memory clinic to diagnose dementia, as well as a day care centre for people with dementia. The more services we set up, however, the more the gaps became apparent, including gaps in information, in support and in respite. While we could set up the services, where did people go when things went wrong? That was a big issue that we wanted to fix.

We were very worried about how little support existed at a time of crisis. It is okay getting regular support, but what if the carer got sick? If that lady I spoke about broke her leg, where would she go? We had an example of a woman who was looking after her husband with dementia. She had to go to hospital with heart failure but took herself home prematurely to mind him because he could not be left on his own. We have been able to rectify that through the service and the project we put together, and I will tell the committee later how we did that.

We knew the service was fragmented and we wanted to change it in every way. We were also very mindful of the emerging national dementia strategy and our projects were chosen to provide evidence that would guide the development of that strategy. In fact, I was asked to be on the working group that developed the strategy and I am now on the monitoring group that is monitoring its implementation. In every way, the core objectives of the strategy have been absolutely embedded in all our work. We have not been doing anything that is separate or different. We were totally prioritising the objectives of the strategy, which are building awareness of dementia and destigmatising it, better diagnosis, post-diagnostic supports and better support for people in the community.

The whole consortium of 26 people - those with dementia, carers and all of us - sat down and we asked ourselves what we wanted to do. We said that we wanted to change the world for people with dementia. We wanted to transform the life experience of people with dementia and their carers, increase awareness of the illness among the public, dispel the myths, reduce stigma and encourage people to come forward earlier for diagnosis and treatment. Most of all, we wanted to provide flexible, person-centred care in the home so people could remain living at home for as long as possible.

I want to give a sense of some of our achievements as we are coming to the end of the project. We have established a single point of contact for dementia. A person can ring one number in south Tipperary and get a very highly trained clinician - a clinical nurse specialist in dementia - who will answer that call and solve the person's problem. Therefore, the lady whose husband is up all night will not just get advice; she will get practical care that will resolve the situation for her. It is transformational. She does not have to ring 20 people who will tell her to ring somebody else. We can solve it with an expert.

We ran a huge awareness raising campaign through developing the role of the community connector. The community connector has worked in health promotion and prevention, as well as in building awareness about dementia through talks in pharmacies, Men's Sheds, resource centres, day-care centres - you name it, she was there. She has worked with the ICA and Meals on Wheels and run pop-up shops. She also did a lot of work promoting the prevention message. The risk factors for heart disease are now the same risk factors as for dementia. If people manage those risk factors - for example, a bad diet, smoking, obesity and diabetes - they can delay and prevent dementia and even Alzheimer's. While that is not widely known, it is an important public health message to get out there. The community connector has been very busy with all of that.

We have run a very effective local media campaign, with monthly interviews on Tipp FM, our local radio station, which are available on our website as podcasts. Tipp FM is also making a documentary as a legacy to the project. Our website gets 4,000 hits a month and our Facebook page gets 2,000 to 3,000 hits a week, so there is huge interest. We were on "Today with Sean O’Rourke" and The Irish Timescovered a conference in May at which Professor O'Shea spoke. I was on "Morning Ireland" this morning before I came here because RTE picked up on the issue from this committee's press briefing, which is great. Media awareness has been very important because it is about putting out the word that people can live well with dementia.

One of the biggest things we have done is to develop an innovative service, the dementia support workers service. The dementia support workers are specially trained and selected people whom we put into people's homes. For example, we pay their car insurance so they can take people with dementia out of their homes.They are not the home help or the home care attendant, and we do not want to substitute for those services because people need those too. The idea is that the dementia support workers would re-engage people in the world and get them back doing things they had given up or taking up new interests and activities they had not even considered before.

We know that social stimulation and brain stimulation are as important as diet and exercise in preventing and delaying deterioration in dementia. For example, we have a man back playing golf again who had given it up. It is one of our dementia support workers who is taking him out to do that and he is now teaching her how to play. Other people are going to the gym or swimming, and, for some, it might be a case of just going shopping again. It is about facilitating them and not letting the disability get in the way, not doing something for them but enabling them to do something for themselves, so they are visible and participating in the world.

We provide routine, short-term care, but the most valuable service these workers provide is crisis care. If a person is in a crisis situation, he or she rings our specialist clinic, which is a single point of contact, and we can provide care straight away that is responsive, flexible and non-bureaucratic. There are no forms to fill because we fill in the forms. It is not like the person makes an application and it goes to a meeting in three weeks' time. Nobody can wait for that. If the carer has broken a leg, he or she needs care immediately. We are able to go out and fix the problem, provide immediate care and help them out until the natural supports take over. Of course, the natural supports are there in the form of family and friends, who are amazing, but this service has made a huge difference to families who are receiving it in south Tipperary. If a carer gets sick suddenly, or if a person is coming home from hospital and the carer is not sure whether they can manage if the nights have been disturbed, we can supply the service. We have had people coming home from nursing homes who use the service. We are really pleased with it. The whole project is being evaluated externally by Professor O'Shea and Professor Suzanne Cahill from Trinity College, and in our own evaluations, 97% of people are saying this is keeping their loved one at home.

We have also developed the first memory technology library for dementia in Ireland, located in the grounds of the South Tipperary General Hospital. It was set up by our occupational therapist and people can come there and view all sorts of telecare and stand-alone products that are helping in managing dementia, such as one-button radios and simple clocks. That service is open to the whole country. Everything we are doing is open to anyone who is on our website but the actual service is at the moment just funded for south Tipperary. We have had many conferences and training days and we have actually changed the mindset of the HSE locally, which means it has really come on board with this and has increased its provision of home help to people with dementia living alone; it is now at a level of up to four times a day in response to our project. Therefore, the HSE, which co-funds this project and for which we work, is really on board and wants to do things differently.

The lady who is looking after her husband had heart failure but took herself home from hospital to mind him. We got a call from the public health nurse and went there immediately. We put dementia support workers into the house to take care of the husband so the lady could recuperate and get better at her own pace. He was safe and still at home. We were able to give that support for a few days until the daughter came home from abroad. In the pre-project days, she would have had to go back to hospital and he would have to go there too, which he did not need. This is all in line with the strategy and it is absolutely where we need to go. It has been hugely successful in south Tipperary.

We are coming to the end of our funding. Our project will end on 8 October and our funding runs out on 29 August. We are involved in very positive discussions with the HSE, locally and nationally. We have met all the Ministers. We have met the Ministers of State, Deputies Lynch and Hayes, and the Minister for the Environment Community and Local Government, Deputy Alan Kelly. Our Deputies, Deputies Healy and McGrath, have been very supportive. There is huge interest in not just sustaining this project but in rolling it out nationally. We think we have developed this great funding and opportunity, and a solution to supporting people at home which is totally in line with the strategy.