I sincerely apologise to our witnesses, those in the Public Gallery and staff for the interruption to our proceedings today. Parliamentary democracy is such that we have to take votes.
Services for People with Dementia and Alzheimer's Disease: Discussion
It is in the doldrums.
I apologise to our guests. I remind people to turn off their mobile phones or put them in flight mode. That would be of help. The second part of our meeting today is on the theme of transforming the life experience of people with dementia and Alzheimer's disease, and that of their families. I welcome Professor Eamon O'Shea and Dr. Caitríona Crowe of the South Tipperary Dementia Pilot Project, and Ms Tina Leonard, head of advocacy and public affairs, Alzheimer Society of Ireland. They will address the joint committee. I thank Deputy Seamus Healy for organising the meeting and for bringing this matter to our notice. I also welcome Deputy Noel Coonan to our meeting.
Go raibh maigh agat.
In a sporting sense, I also congratulate Professor O'Shea on his great victory last Sunday. We look forward to meeting him on the first Sunday in September.
This meeting is an important and extremely topical one on the issues of dementia and Alzheimer's disease, which are faced by many families and communities. Members of this committee are aware of the issues which arise when one is growing old. Our elderly population are a pivotal part of the health system, so it is important to examine the issues involved. Today's discussion is therefore opportune and welcome.
Before we begin, I must advise witnesses that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by the committee to cease giving evidence on a particular matter and they continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable.
Members are reminded of the long-standing ruling of the Chair to the effect that they should not comment on, criticise or make charges against a person outside the House or an official either by name or in such a way as to make him or her identifiable.
I call Professor O'Shea to make his opening remarks.
Professor Eamon O'Shea
I will start by providing a national perspective as a lead-in to Dr. Crowe who will talk about the South Tipperary Dementia Pilot Project, including some current ideas and realities about dementia.
Dementia is an ageing problem and there is still a great stigma attached to its diagnosis. The financial, emotional and social costs are high. Public knowledge is improving but attitudes remain largely negative. People with dementia and their carers are certainly one of the most vulnerable and invisible in society.
Ireland has an ageing population and therefore the numbers with dementia are likely to grow, particularly among the very old. The fastest growth area in the population is that aged 80 or older, so we are likely to see an increase in dementia numbers. There are just under 50,000 people with dementia in the country. By 2041, that number will have trebled to roughly 140,000 people. The numbers will increase, so the big challenge is to find ways of addressing some of the needs associated with dementia. The South Tipperary Dementia Pilot Project is about trying at an early stage to get to the heart of caring for those with dementia in their own homes.
We have done some work on the main costs of dementia nationally and, relative to other diseases, dementia has a huge cost. Our calculations show that the annual cost of dementia is about €1.9 billion, which is a significant cost relative to treating heart disease or cancer. The main driver of those costs are family carers who essentially provide most of the care for those with dementia. Approximately 50% of the costs are associated with family carers when a value is put on their informal care. This makes it different from other diseases whose treatment is associated with technology.
Residential care costs are also high but, interestingly, primary and community care costs are pretty low. This is because we have not yet got to the point where we are providing such services. This is an important point to note in the context of what Dr. Crowe and Ms Leonard will say later. Dementia is a different type of issue than the normal things we come up against in health where many costs are taken up by high technology and acute care. This is what makes it different.
The current realities include a lack of focus on preventing dementia, which is not often talked about. Some dementia issues have a preventative aspect, especially with regard to heart disease and stroke. We therefore need to concentrate on what we can prevent. Diagnosis is still largely poor and there is a stigma associated with it. Many people are unaware of the disease. The majority of the 48,000 I spoke of earlier would not have a diagnosis, which makes it very different from other illnesses. If it is unknown, we do not do enough about it.
Community care is largely fragmented and incomplete, although some valuable work is being done. We need to put the focus firmly on home-based care, supporting families and individualised and personalised care. Dr. Crowe will say that having that link to the clinical lead and having a focus on individualised and personalised care is a new dimension for caring for people with dementia in this country.
We know the Government's policy and we have just had a national dementia strategy, but the key is how we implement it. It is good that the strategy is there and the objective is to keep people in their own homes for as long as possible and practicable. The implementation of that strategy is the key element. We are hot on the heels of other countries that have national dementia strategies. The emphasis is on diagnosis, finding pathways to care that support those with dementia, personalised care, and having adequate residential care.
The national dementia strategy must be framed in a philosophy which is about person-centred care and personhood. It is also about the capabilities, inclusiveness and inclusivity of those with dementia within the system. The critical element of the implementation strategy is how to get to the person with dementia and their family carer in a way that will enhance the care experience. Dr. Crowe will speak later on about the South Tipperary Dementia Pilot Project, which is essentially wrapped up in a person-centred, personhood model.
The focus of implementing the national dementia strategy should be on the person with dementia, the family carer, and looking after people in their own homes. If we manage to do so, it will not only have a health benefit but will also have a potential economic benefit. If we can keep people out of residential care, it will be a major and valuable addition to resource allocation. Dr. Crowe will demonstrate that with some figures.
This brings me to what we need to do differently and why the south Tipperary project is so important. The current policy is encompassed in four or five key words. This is not only for Ireland but also internationally, where we need to move to a new model. Currently, we tend to think about dementia as individual, overly biological, and in terms of residential care, risk, deficits and exclusion. We must transform care from a world where these words - individual, biological, residential, risk, deficits and exclusion - are in common usage. Can we transform that world into one where we see dementia in some sense of collective, society and home-based care? Can we move from risk to examining people's capabilities, what they can still do, and how they can still engage in society and the local community? If we can move towards thinking of older people with dementia as significant assets in local communities and also moving from exclusion to inclusion, that is the real challenge. That is what is interesting about what Dr. Crowe is going to say - the transformation of a model from exclusion to inclusion.
I will stop Professor O'Shea. I apologise, but a vote has been called in the Dáil.
Professor Eamon O'Shea
That is fine. I was near the end.
Does Professor O'Shea want to finish?
Yes.
Professor Eamon O'Shea
The key element of the conclusion is the transformation of care. That is what should be emphasised in a national dementia strategy. To have that transformation, we need to challenge the following. We need to think of dealing with dementia as the most important aspect of ageing. We can talk about financing and communicating, but dealing with dementia is the really significant issue. We need to mobilise political and intellectual resources to support a liberating national dementia strategy. We need to make the national dementia strategy real and tangible for people living in their own homes. We need to create an understanding of dementia in society. We need to agree key priorities. For me, the key priority is to support individualised person-centred care for people in their own homes and communities. We need to support the practice of personhood. That is the challenge for everyone. It is not just for the deliverers of care or families but for the political system. Do we have the vision, courage and capacity to imagine a new paradigm, a new model, for people with dementia and, more importantly, activate the national dementia strategy to support this vision? If we were to do this, we could completely transform the lives of those with dementia.
Dr. Crowe will talk about what the transformation might look like.
The sitting is suspended until after the vote.
Sitting suspended at 1.05 p.m. and resumed at 1.20 p.m.
We resume in public session. I apologise for the delay, but these are the joys of parliamentary democracy. I thank Professor Eamonn O'Shea for his presentation and ask Dr. Caitríona Crowe to give her opening remarks.
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 Times covered 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.
I thank Dr. Caitriona Crowe for her passionate presentation. I now welcome Ms Tina Leonard, head of advocacy and public affairs at the Alzheimer Society of Ireland. I also welcome Ms Emer Begley, policy and research manager of the Alzheimer Society of Ireland and Mr. Noel Maher, clinical nurse specialist, Mr. Richie Molloy and Ms Maeve O'Neill all from the South Tipperary Dementia Project, who are in the Visitors Gallery.
A vote has been called in the Dáil. I apologise to the witnesses. Rather than stop and start, I will suspend the sitting until after the vote and eventually we will get to hear the presentations.
We might have a few votes.
This should be the final vote.
Sitting suspended at 1.32 p.m. and resumed at 1.48 p.m.
Professor O'Shea has had to leave us for a while due to another engagement, and we apologise for the interruption, which was a result of the votes being called in the Dáil. We will hand over to Ms Tina Leonard, head of advocacy and public affairs at the Alzheimer Society of Ireland, who is very welcome.
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.
I am conscious of time constraints as there will be votes in the Dáil.
I thank the panellists who have been here since this morning. We collectively apologise for all the delays today. I refer to the quote from the WHO which Ms Leonard cited which describes dementia as one of the most serious challenges facing the world today. I agree with that opinion and I know only too well the truth of it. I welcome all the delegates.
I do not have a raft of questions but one of the aspects that struck me with regard to the south Tipperary initiative is its simplicity. It is not complex and it is very straightforward, which is, perhaps, its strength. The critical aspect jumps off the paper but it also came across even stronger in the passion of each of the contributions. I apologise I did not hear all of Professor O'Shea's contribution as there was a vote in the Dáil. I refer in particular to Dr. Crowe's contribution. That passion, while it is not written into the text, just jumps out at me. I refer to such a critical component part in the success of the initiative which is the people; both they and the community have made this difference. I refer to the five steps of the Living Well programme or the building on those steps. The five areas are among the achievements of the past three years. Just two of the five areas, particularly, are directed to the dementia sufferer. The others are supportive of, or directly geared towards the wider family and then the community in turn, in terms of other supports, technological advances, dealing with the stigma, public knowledge, awareness, acceptance, all of those things. I ask the delegates to tell us a little bit about the clinical nurse specialist. I ask them to describe the factual position of the clinical nurse specialist - perhaps there are more than one - who is described in the contributions as the single point of contact for people with dementia.
My other question relates to the dementia support worker. I can readily identify with this role. I have had a recent experience within my extended family and friends of another case of dementia in the recent past and all that entails. I see how it can very much limit and arrest another's life because of the support requirements. I ask for more information about that role. How many dementia support workers are in the service in south Tipperary? With regard to the other areas I can readily understand and appreciate and I can apply them without any difficulty in my own community. I can see how we could all play a part. The clinical nurse specialist and the dementia support worker are more particular roles. Is there a training process for dementia support workers? What degree of preparation is involved? What is the personal profile of those who are support workers?
I refer to Ms Leonard's contribution and I ask Professor O'Shea to contribute as he thinks appropriate. I refer to the significant number of people with dementia under the age of 65. One particular case was represented in the audio-visual room only several months ago. He was a young man who could only be described as heroic, in my view, as he was looking after his mother who has dementia while still in her 50s. It can present even earlier than that. Are particular responses required for the younger age group as against dementia presenting in older life? Ms Leonard spoke about an estimated number of 4,000 people and that is not an insignificant number of people. This committee has addressed a raft of different rare diseases over the years that, in some cases, affect fewer than 100 people yet we are pressing, quite correctly, for specific supports and assistance. However, there is a particular cohort of younger people here and their needs may be slightly different, I would think, than those of the older cohort.
The investment of €30.2 million for dementia specialist intensive home care packages is one of the key component parts of the group's pre-budget submission. It proposes that this would extend beyond the eight pilot areas and to all local health organisations regionally. I ask the delegates to identify the eight pilot areas. I agree that receiving a service should not be dependent on where a person lives.
The people in south Tipperary will not be able to readily identify with what I am now going to say but I live four miles from the Border and I have lived there all my life, born and bred. Many in my home community, because of the absence of sufficient capacity within support structures and because of where they live, naturally gravitate towards the next little town or community and that might be in Tyrone or Fermanagh - I am thinking specifically of Tyrone and the Clogher valley. The fair deal support does not allow my neighbours, whose life gravitation has been to Clogher village, access to the use of that nursing home. There is a deficiency. We are talking about developing all-island solutions to health challenges and this is a very practical area. Fair deal should be available on the basis of the need of the individual as against the geographic location, not just of the individual, but of the service. I ask Ms Leonard to comment from the point of view of the Alzheimer Society of Ireland.
I thank the Chairman, Deputy Buttimer and the members of the committee for agreeing to hear about the south Tipperary pilot project, the five steps to living well with dementia. This project has done excellent work in south Tipperary and has been hugely successful. I thank all the delegates for the very thorough, informative and detailed presentations we have heard. The south Tipperary pilot project has been particularly successful. It has reached approximately 340 individuals and families who are touched by dementia, which, as all speakers have acknowledged, is hugely challenging now and will be in the future. The reason the project has been so successful links to what Professor O'Shea said earlier.
It is certainly well on the way to changing the mindset of society in south Tipperary towards dementia. In the past, the initial reaction was that a person with dementia needed residential care sooner rather than later, as they were seen to be a risk to themselves or their family members. That has changed in south Tipperary where people now see services and supports are available which enable a person suffering from dementia to live and be supported in their own homes and their own communities.
One of the reasons south Tipperary was chosen for the pilot project was because considerable work had already been done there in this field. The Le Cairde day centre opened in Cashel in 2006 and the Memory Technology Library in Clonmel in 2008. South Tipperary had form in this area. The three-year pilot has been particularly successful with single points of contact, the website, the dementia support worker and crisis care system all setting a scene whereby persons affected by dementia and their families see a future at home and in their own community, rather than in long-term residential care. The focus is to keep people at home living independently for as long as possible. There was a widespread media campaign undertaken by the pilot project which was supported by the local radio station, Tipp FM. It is to be congratulated on the success of this pilot project. This pilot project, with which Dr. Crowe has been involved, should be supported financially, along with the national dementia strategy, and rolled out nationally. I expect the committee to request this funding from the Minister and the Department and I hope it will do so.
I thank the delegations for their presentations. I really liked their empathy towards the patients in question and the language they used. They spoke about personalised treatment and it being inclusive to the person and their family. Often when we get these documents, one often just gets budgets and statistics.
The pilot project in Tipperary sounds fantastic. Dún Laoghaire has a strong project, Living Well with Dementia, run by Eilis Hession from the Health Service Executive. None of us wants to suffer from dementia when we are older. Tina Leonard said advisers can help slow the onset of dementia. I did not know diabetic patients are more prone to dementia.
I thank the Chairman for inviting Tina Leonard as it is important the committee hears from the Alzheimer Society of Ireland. I know the delegations want a commitment to continue the strategy with a budget behind it. I will do my best, as will every other member.
I thank Deputy Mitchell O’Connor for suggesting the committee invited the Alzheimer Society of Ireland to this session.
I missed the presentations but heard Dr. Crowe on the radio this morning. Dr. Crowe asked the committee members to put themselves in the shoes of one of her service users. I have been in those shoes, along with my brothers. My mam was diagnosed with dementia when she was 89. It was heart-breaking for the family but devastating for my mam who was very active up to three months before she passed away. We were really taken by surprise by her condition.
I was interested to hear Dr. Crowe talk on the radio this morning about not locking people with dementia away but to keep them at home. My two brothers lived with my mam. Through their unconditional love and affection, they made her life that little bit easier. The highlight of her day was going out. For some strange reason, she became a big fan of McDonald’s which she never liked before. Towards the end of her days, her favourite was chips and tomato sauce.
It is frightening that the figures for people with dementia will double by 2031, with 96,000 people diagnosed with the disease by then. What is different about this pilot project to what other organisations and many other communities are doing? Is there any graphic illustrating the national and regional distribution of the number of people with dementia?
I thank the delegations for their presentations and the work they are doing in this area. Obviously, it is a difficult area and will become an increasing one with our growing aging population. Up to 990,000 people will be over 65 by 2030 which will mean there will be a growth in the number of people with dementia.
I noticed a significant variation between the number of men and women who have dementia from the 2011 census. For men, it was 17,391 diagnosed with dementia while for women, it was 30,459. Why is there such a variation? Is it because women live longer? Has any research been done in this area? Is it an area in which we need to do further research?
An issue raised in the national dementia strategy was that 94% of hospitals have no dementia care pathway in place.
When reports and strategies are produced, I always worry about the timeframe for implementation of sections of reports and cross checking to see what progress has been made after two, three or five years’ time. Do we have enough mechanisms in place to cross check the progress that is made on what is set out in a clear strategy document, which took time to prepare? Who will audit it? It is very important. While it is great to produce reports, the timeframe for implementation of the recommendations is important. Regarding the finding that 94% of hospitals have no dementia care in place, what progress can be made on it and in what timeframe?
I thank each witness for their detailed and useful presentations. They outlined that in 25 years’ time, the number of people living with dementia will have tripled. It makes sense that people should be supported to live at home for as long as possible. There are waiting lists for the fair deal scheme, and with 20,000 people going over the age of 65 each year for the next number of years, it makes sense for people to be cared for at home. I was particularly interested in the south Tipperary dementia pilot project, especially in the way the witnesses personalised the stories in the presentation.
The presentation stated that there is a single point of contact in south Tipperary. I presume each of the eight pilot schemes has this single point of contact. Do people from outside the Tipperary area make contact? Have the witnesses considered temporary sheltered accommodation for people who do not have anybody to care for them? The presentation mentioned that it is possible to delay dementia. Could the witnesses expand on that? Ms Leonard mentioned that the project has provided more than 1 million hours of care to approximately 9,500 people suffering from dementia. Some 50,000 people suffer from dementia. Are the rest of them living in nursing homes or are many people receiving no service at all? The eight dementia advisers deliver a service to 1,760 people. I wonder about all the people who receive no service at all.
I apologise that I could not be here earlier. I read the submissions, which we received in advance of the meeting. Given that I have a family member who suffers from dementia, I am familiar with it, and it is sad to see the deterioration at an early stage. They try to get involved in family conversations, and get in and out of it. In a one-to-one situation they are only able to cope and one sees the difference. I agree that information is vital. In one instance, the person strayed and got lost. A simple thing like putting a mobile telephone in the person's pocket so one can make contact and know where the person is at any time of the day or night can be effective. It took three years before the family discovered this.
The person in my family began to suffer from dementia in his early 60s and is in his mid-60s now. It was a very sad time for his family, when they still had much to look forward to. He is still in his home and is being cared for. In Adare, where I live, there is an excellent day centre. It provides an outstanding service and is greatly supported by the wider community outside of those who may be involved with the families with dementia. I congratulate the witnesses on the work they are doing and wish them well. I have read their pre-budget submission and, hopefully, we will be able to further influence those who have the authority to make decisions.
I thank the witnesses for their attendance. I am sorry I missed most of the presentation. I never knew what dementia was until several years ago when my mother went into a nursing home and I realised some of the people there were suffering from Alzheimer's disease. I did not realise they needed special care and often wondered what we could do to help them. I always thought dementia was part of the aging process and that the older one became the more likely it was that one would suffer from it. Only when I examined the statistics and read Ms Leonard's report did I realise that 4,000 people under the age of 65 suffer from Alzheimer's disease, which is very alarming.
As a young person, how can one identify dementia? We all suffer from memory loss at some stage. Communication, functional abilities and behaviour are also mentioned. Behaviour is probably the most common way dementia is discovered. We need much more care, especially in our general hospitals and residential care. My mother was old and was in a nursing home because she was coming to the end of her life. I saw people who needed more than somebody putting them in a wheelchair, taking them to a dining room and feeding them and doing the normal things. Many of them had behaviour problems and it took two or three people to look after them. I am an advocate of people staying at home. I often say if anything happened to my wife or me I hope we would look after each other, and I hope my children look after me. The statistics are shocking. Some 48,000 people are suffering from dementia and, as the presentation stated, by 2041 the figure may have reached 132,000.
We are very lucky. I come from Dundalk. We got a bad beating last week in Thurles. I am sure Professor O'Shea was there, and he had his own problems. There is a centre in Dundalk called the Birches. The amount of work the people there do is second to none, however they find it very difficult to get money to keep them going and they depend on charity. We will have to push harder on dementia and let people know it can affect young people as well as old people. The presentation was excellent. If the committee can help the witnesses in any way, they need only ask.
Dr. Caitríona Crowe
I thank the members for their wonderful questions and their attention and interest. It is very moving for us that they are so receptive to what we are saying. Clinical nurse specialist is a recognised grade of nurse already in the health service. It is a very senior grade and is equivalent to the clinical nurse manager grade CNM2, who would run a ward. These people are senior and highly qualified, and they work across a range of specialties such as diabetes, respiratory medicine, midwifery and work at a very high level of expertise and autonomy with the clinical team. We developed our clinical nurse specialist post towards the end of the project when we realised there was a need for a very highly qualified nurse, who is highly expert in dementia in all the possible complications as well as the simple parts, to be in the community, go out and respond to need, do assessments and put in services. Being the single point of contact is attached to it but is not the clinical nurse specialist's only job. When a query comes in, it comes to a person who is very expert, highly qualified and can do something for the caller, not just to a secretary who will tell the caller to go to his or her GP.
The beauty of the pilot was that we could understand that this was the necessary level of expertise. It is a recognised grade and we have two fantastic people jobsharing the role at the moment. One is an advanced nurse practitioner in dementia and the other is a clinical nurse specialist in old age psychiatry. They are the best of the best and we are lucky to have them. We are going to mainstream this post as the service goes forward. It is a recognised, senior and expert grade that is useful for families and people with dementia.
I must interrupt Dr. Crowe. Functioning from what setting?
Dr. Caitríona Crowe
The project has been run through my old age psychiatry team for three years. It is not that these people were psychiatric patients. It was that I was the lead. It was meant to ensure good governance and accountability and to keep it safe. As we proceed, there will be no need for all of the patients to be under old age psychiatry. It is making them psychiatric patients unnecessarily. A part of our sustainability plan is to move them into community care, with the consultants having an overarching involvement and there being more of a memory team running it alongside HSE management. We are working on the location and setting. Our sustainability plan is for them not to be in mental health services, as they do not need to be there, and that they would access mental health services from our clinic and mental health specialists when they need it. Most people do not have psychiatric complications in dementia, but approximately one third of them do. People will be located in community care with the proper governance and supervisory structure around it.
Regarding Deputy Ó Caoláin's second question, which was on dementia support workers, they are an interesting grade. We have developed it and their role. It is based on peer support workers. Members might have heard of them. They crop up in many settings. For example, they are being developed in mental health services. We recruit them from the Alzheimer Society of Ireland and the Carers Association. We work closely with both groups. This is a collaborative project. We have recruited people who are trained to FETAC level 5, which is a nationally recognised qualification. We reinterviewed them for the project and checked their suitability. We had a high threshold. If I was happy to see them in my mother's kitchen, I would have them in the project. They had to be special, warm and giving.
We have fantastic people. There are 19 of them. We give them further training. We developed a two-day intensive dementia programme. We also give them monitoring and mentoring. We are very fussy about the quality of person whom we have. We brought them all in last week and they told us how much they loved doing this work. It is new work in Ireland. It is different than being a home helper. Some are home helpers and some are doing other jobs. Ours is a new model that can be expanded everywhere.
Deputy Ó Caoláin's third question was on the population. In south Tipperary, there are approximately 1,000 people with dementia. In or around one third of those are in long-term care, leaving 650 or so in the community. Our budget of €700,000 has allowed us to provide support to approximately 340 of these over three years. That is the cost of four or five people in long-term care in the same period. The cost effectiveness is staggering. I hope that I have answered the Deputy's questions.
Dr. Crowe has indeed. I thank her.
Dr. Caitríona Crowe
Turning to Deputy Mitchell O'Connor, the Stillorgan-Blackrock pilot is a sister project of ours. There are four Genio projects around Ireland, including one in Kinsale and another in Mayo. We are all closely linked and collaborative, so we recognise the fantastic work that is being done in Stillorgan-Blackrock. It is also trying to be mainstreamed. I did not have time to mention the other pilots today, but I want to acknowledge their fantastic work.
Deputy Byrne's comments about her mother were moving. We recognise that anything we do as professionals is only a drop in the ocean compared with what families do. What they do - the love and loyalty that they show - humbles us all of the time. We support them in continuing to do what they want to do. Irish families and communities are extraordinary. We see it every day. It would move one to tears to see what people do for their loved ones, how much they love them and how much they want to look after them. I wanted to say this publicly.
The Deputy asked me what was different about our project. It is a collaborative project between us and the four voluntary bodies, all of the HSE staff that one might think of, the Alzheimer Society of Ireland, the Carers Association, Muintir na Tíre and the South Tipperary Community and Voluntary Forum, which is an umbrella group of the 70 voluntary bodies in south Tipperary. At the core of the project are three people with dementia and three carers. Some of these carers are former carers. We got a blank page from the HSE and were asked how to do it differently. The HSE gave us that money. It was an amazing opportunity to redesign factors. We looked a great deal to former carers who explained that something or other was not there when they were caring, for example. It is a different approach, in that it is bottom up rather than top down, and had never been seen before. This was a major strength. People with dementia and carers attended everything we did. They told us what to do next. In our memory technology library, former and current carers told us what would work, what not to use, etc. Much of the expert opinion that I give families on what to do next I learned from other carers. They found that something worked and they passed on the knowledge to someone else. The collaborative, bottom-up approach, the person with dementia and the family are at the centre of everything, making our project different.
We had freedom with our funding to change the project as we saw fit. We did not have to get permission to make a clinical nurse specialist post. If we recognised that it was needed, we did it. It was free and unrestricted. That has been a liberating experience. We have done amazing work with €700,000 and had the freedom to provide support to 340 people, as we did not need to submit business cases, write letters or explain matters. It is a great model for how the health service could be in many other domains.
It is called, "Thinking outside the box".
Dr. Caitríona Crowe
Yes. That was encouraged. If something did not work, one could stop and try something else. That has been positive. Everyone working in the project has a day job as well. It is not just me, in that we are all enthusiastic about it. I am talking on behalf of 26 people. We are happy to have been given a chance to do this and change the world for people with dementia.
I was struck by Professor O'Shea's remarks about transforming the care and changing the model. Arising from the pilot project and his own work, is there a buy-in for that concept across the strategy?
Professor Eamon O'Shea
As part of my job, I evaluated the first year, and have just evaluated the second year, of the four projects across the country. They have been transformative in the context of individualised, person-centred care. The new model or, as Deputy Byrne called it, thinking outside the box has been the main lesson. The national dementia strategy was published last year and is at an early stage. If we can manage to integrate the ideas, concepts, philosophy and support for home-based care and people with recognising the person with dementia and his or her importance, the national dementia strategy can be equally transformative. There is a double win here. Dr. Crowe has emphasised what is good about this work, but the task for the next couple of years will be to support the strategy in being equally liberating.
Dr. Caitríona Crowe
Turning to Senator Burke's question, the difference between men and women is that women generally live longer. Men may have more risk factors, but it is women's longevity that has that figure so high.
The implementation element is important. The strategy's monitoring group will monitor the implementation. We have a large job to do there. Professor O'Shea and I are members of the group. We in Ireland are good at strategising, but we are not always good at implementing. That is our greatest job. At least this kind of approach can be implemented and copied everywhere. We are not precious about it. We can give everything to everyone. People have been coming to look at and find out about what we are doing. We are more than happy to help other groups to set up. They do not have to do all of the ground work; we have done that and found models that work.
Turning to Deputy McLellan, a single point of contact is important. As to the eight areas that will get intensive home care packages, those packages are in a novice state. They are concerned with getting people out of acute hospitals and back home. We have received funding from Genio for three packages outside of the eight. They are cumbersome to put in place and there is a great deal of paperwork, but they could be useful in time. There is no single point of contact yet, but each of the three other Genio projects that Deputy Mitchell O'Connor mentioned has a single point of contact.
We have not set up any sheltered accommodation as part of the project, but there is a small amount of it in south Tipperary and some people with dementia live there as part of our normal practice. We have not done anything differently in that regard.
Delaying dementia is important. This is something that we all need to think about. Four treatments for dementia came out between 1997 and 2002, but there has been no new treatment for it since. What has come out is evidence to the effect that, if one manages one's vascular risk factors, which we should all manage anyway for healthy hearts and brains, one can delay the onset of dementia.
That is part of the heart strategy. It is part of the Healthy Ireland strategy. We need to emphasise that and let that word go out. We were always afraid of dementia but at one time TB was not talked about. People never talked about cancer, HIV and AIDS. Those are now talked about. There is no stigma surrounding them. We need to talk about dementia in the same way as something that one can do something about. That is not to say that plenty of people who got it went on to live healthy lives. Therefore, it is not the only risk factor. If we, as individuals, can do anything, we would be happy to do so, but also acting as part of a wider community can help.
Deputy Neville spoke of the wandering and the simple contact by telephone, and I appreciate that. It is often other families who come up with those kind of solutions. We found that in the project. We have spaces where families can tell each other and give advice.
In response to Deputy Fitzpatrick on the question of dementia and Alzheimer's, it is common for people not to understand the difference. People say to us they do not mind if they have dementia as long as it is not Alzheimer's. Dementia is the umbrella term and Alzheimer's is the commonest type, but there are approximately 50 different types of dementia. People use the terms interchangeably and the Alzheimer Society of Ireland does not restrict itself to Alzheimer's but covers every dementia. The terms are used interchangeably but Alzheimer's is the commonest type of dementia.
Dementia is different to normal ageing. People think it is normal ageing and want to say that there is nothing wrong but it is different. The outcomes for the person are very different. We all are losing brain cells all the time, probably from our 20s, but that is not dementia. Dementia is not normal aging. As anyone who has been involved with it will know, there is a difference qualitatively in terms of the experience.
In the general hospitals, there are three big Genio projects. The Genio Trust, the funder of our projects, combines Atlantic Philanthropies and government funding through the HSE. There are three big Genio projects going on in acute hospitals over three years to improve the dementia care pathway through acute hospitals. These are in Blanchardstown, St. James's and the Mercy in Cork. Those are trying to correct the care pathway because general hospitals are terrible places if one has dementia. Patients get very confused and agitated. The projects are trying to smooth out and improve such issues as training, understanding and the environment so that the patient has a quicker trajectory and gets out quicker.
With our project we found it has spilled into the general hospital and one of the general hospital wards has made itself dementia friendly. Tesco has even set up fund-raising for us using its tokens to make the ward dementia friendly. It has been done out of donations with no new funding. The ward has been reoriented, painted in dementia-friendly colours and uses signage and trained the staff. We found with our project we can get patients out of hospital quicker because we can put in support workers to get them home, and that is a much better outcome. Those with dementia do badly in acute care. They have longer lengths of stay suffer higher forms of morbidity and greater mortality and are more likely to end up in long-term care.
I think I have answered my questions.
Has Ms Leonard anything to add?
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.
Professor Eamon O'Shea
I want to reiterate the points made by people who are closer to the issues than me. However, there are two aspects to be considered, the first of which is the large numbers, including the 50,000 who have been diagnosed and the multiples of that who will be affected in the next few years. How we deal with that will be a seriously significant issue, not only in terms of the issue of dementia but in the funding of dementia supports. Equally, when we talk about big numbers, it is easy to forget about the issue of dementia and the person-centred, personalised care that recognises the dignity and humanity of the issue for people and their families. That will be a key aspect in the coming years.
We are in a position now where we have a strategy. The key issue is the implementation of that strategy, which must be accelerated. Having a strategy is one thing, but implementing it is another. We need to recognise what I just mentioned, namely, the number of people affected and the individualisation associated with the illness. We have some examples of projects in south Tipperary and other areas where there are huge gains to be made from considering the social aspects of the disease and how communities can be mobilised if there is significant public investment in dementia. If we could merge the notion of the local with the issue of public support for people with dementia, we would be in a position to say we are addressing a significant issue. The opportunities are many.
I have a brief question regarding the fair deal scheme and the question I posed about someone being unable to access nursing home support within their immediate community because it is outside the jurisdiction. It is a problem, and I am sure it is not unique to north Monaghan. It probably goes along the Border's length, but I am most familiar with a particular case in regard to two homes in the Clogher Valley.
Ms Tina Leonard
This is a real issue. While we said the Government's focus in terms of spending is on long-term residential care, it is important to say that in an ideal world, there would be more options. The Deputy mentioned sheltered accommodation. There are no other options for people who need that level of help now, and that is a problem. People with dementia trying to access a nursing home under the fair deal scheme may, and do, come up against not only geographical problems but also that some nursing homes will not accept someone with dementia. For example, a member of a family I know was in a nursing home but the family were asked to take the person out of the nursing home because it could no longer deal with the person whose condition had progressed. Can one imagine getting a call like that? Even if someone gets a package under the fair deal scheme, there can be barriers in terms of accessing the care. Issues arise across the journey.
I thank sincerely Professor Eamon O'Shea, Dr. Caitríona Crowe and Ms Tina Leonard for the quality of their presentations and the work they do. Deputy Healy made the suggestion that in our meeting tomorrow morning we might reflect upon the proposal he made on the request to write to the Minister and the HSE. Is it agreed that we will discuss that in the morning? Agreed.
The joint committee adjourned at 2.55 p.m. until 10.30 a.m. on Friday, 17 July 2015.