Dementia Strategy: Discussion with Alzheimer Society of Ireland

I welcome the Alzheimer Society of Ireland. We had the opportunity before the meeting to consider its paper which has been circulated to all members.

Before I begin I wish to advise 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. If witnesses are directed by the committee to cease giving evidence on a particular matter and they continue to do so, they are entitled thereafter only to a qualified privilege in respect of their evidence. Witnesses 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 or entity by name or in such a way as to make him or her identifiable.

I understand Mr. Maurice O'Connell can give the committee the benefit of an executive summary of the paper that has been circulated. Our members have a number of questions to put. I invite Mr. O'Connell to introduce the delegation and make a presentation.

Mr. Maurice O’Connell

I am the chief executive officer of the Alzheimer Society of Ireland. I am accompanied by Ms Sarah O'Callaghan, head of public affairs and communications, and Mr. Pat Doherty, head of services.

On behalf the Alzheimer Society of Ireland and families I thank the Chairman and members of the committee for the opportunity to speak to the committee about dementia care in Ireland and the hidden health crisis of people with dementia and their carers. Dementia is a major public health issue with massive, social, political and economic implications. Regardless of its impact, it is a new area of policy focus that has inadequate funding and planning. As a result, there is no clear care pathways for dementia. Many families leave after diagnosis with little or no idea of what it is that is before them and many have nowhere to go to get information about what is available.

There are enormous gaps in dementia services. There is no clarity on how much is spent on dementia-specific care and on overdependent on undersupported family carers. Notwithstanding the pressures of the current economic climate, the Alzheimer Society of Ireland is acutely aware of the increased numbers of people affected by dementia, their growing health and social care needs and the cost to the State if these needs are not addressed. Many families are living in quiet desperation in a shadow reality with no service and no voice to be heard. We are struggling to cope with funding restraints and huge demand for our services nationwide but it is not enough.

Alzheimer's disease and other forms of dementia affect people in every community in Ireland. There are 44,000 people living with dementia today, with 50,000 carers and 132,000 family members also impacted. Demographic trends indicate that the numbers of Irish people affected by the condition is expected to soar to 104,000 by 2036. The impact of dementia is life-changing for the person and the family carer, affecting their physical, emotional and psychological well-being. Because of the multiplier effect, carers are often called the hidden patient.

Dementia affects people in different ways. Typically the person experiences gradual progressive deterioration in brain function, including decline in memory, reasoning, communication skills and the ability to complete daily living tasks. Over time the person becomes increasingly dependent on his or her carer and on dementia services.

Receiving a diagnosis of dementia does not change a person's desire to live at home for as long as possible and community-based models of care can be both effective and efficient in facilitating this, provided there are adequate levels of carer interventions to increasingly assist the family carer as his or her loved one's dependency increases.

The recent "Prime Time Investigates" programme showed only too clearly the impact dementia can have on family carers witnessing the changes it brings to their loved one's personality, well-being and ability to recognise those close to them. It goes beyond heartbreak for family carers, causing anticipatory bereavement and sometimes despair but, on the other hand, their overwhelming love for their family members gives the carer tremendous strength and resilience. In many cases the first we know about people in crisis is when the carer presents in the acute hospital setting. It is then too late for the carer who is burned out and ill and it is too late for the person with dementia to continue living a relatively healthy life at home.

Carers want to care and in doing so provide significant savings to the State. However, they are struggling to cope because most find that the current health and social care system is fragmented, inflexible and inequitable. Initially, the person and his or her carer have to struggle with the recognition of the early insidious dementia symptoms and seek medical assistance. Given the low levels of public understanding and dementia-related stigma, this recognition is often delayed because people do not know the signs or they are too afraid to seek help. The experience of accessing the diagnosis can vary from person to person, often based on geographical location or individual professions involved. For some it can be a swift and supported process but we know that all too often it is not. Many people are waiting up to four years for their diagnosis, by which time the person's condition has already progressed. This timeframe compares badly to nine months in Germany and 13 months in Italy.

All too often the diagnosis is given without information, training or back-up, with no support details provided, not even the Alzheimer helpline number. There are little or no community support services available to assist the person and the carer to live at home. Often they become isolated within their homes, away from community living. Many carers must significantly reduce work or stop working to care as the condition progresses. As the journey continues, families tell us of their difficulties navigating a health and social care system that is disjointed, overstretched and overly medicalised, where the person with dementia is not always valued and responded to individually. Carers can feel they have no voice yet must be the voice for two people.

Acute care settings could not be more dementia unfriendly. We often hear that "the person in bed No. 10 is troublesome". When long-term care is required for loved ones, there are not enough dementia-specific residential services, and these are usually not inclusive of the needs of carers. From the points of diagnosis through community living to palliative care, there is a constant struggle for the carer. For a person, the system is far too often only concerned with medical needs and is not cognisant of social, spiritual and emotional requirements. Many families tell us the Alzheimer Society of Ireland is their lifeline in hope, help and understanding. Our meagre service offering four hours of home care and two days of day care per week is the difference between being able to care and cope at home as against not being able to care at all. Those families do not know what they will do if this lifeline is taken away.

For 28 years the Alzheimer Society of Ireland has been working at the heart of local communities supporting tens of thousands of families in living at home, where they want to be. Founded by two family carers, today our national network of services, such as day care, home care, respite and carer support groups, provides social and therapeutic interventions for the person with dementia. At the same time the services provide care with vital supports and respite. For example, our social clubs strive to preserve the friendships, social connections and couplehood between the person with dementia and a carer. This is with the goal of ensuring they stay together for longer. Our tele-care project provides assistive technology for use in the home.

Volunteerism continues to be central to our work in fundraising and awareness activities. We have 500 trained volunteers working hand in hand with staff to enhance our professionally led services. Without this dedicated army of volunteers and staff, the Alzheimer Society of Ireland could not continue to provide current levels of services to our 2,100 service users. Constrained in our reach, users of the Alzheimer Society of Ireland's home care services receive an average of only four hours per week, while users of our day care receive two days per week. Services are largely full and at capacity, with waiting lists having grown by 33% this year to more than 1,000 families.

Calls to our national helpline have increased by 21%, with people desperately needing information and details of dementia services. These are all clear indicators that more people than ever before need help that is just not currently available. With an over-reliance on carers in Ireland, the risk of care-giver burn-out is significant and represents an immediate threat to the balance of care for people with dementia. When burn-out occurs, crisis hits. Often the family carer requires care and attention so the loved one can be prematurely admitted to long-term care, as there is no other option available. Ultimately, the cost to the State is a multiple of what the early interventions would have been, and the human cost to the person with dementia and the family carer is incalculable.

There is little doubt that there is a hidden crisis that is growing and will not go away. It needs attention now to meet the needs of people today but also to plan for the increased numbers of people that will be affected by the disease. The Alzheimer Society of Ireland recognises that the 2011 budget will be particularly difficult, affecting everybody and everything. The economic and human cost of ignoring this major and emerging challenge of a carer crisis will have significantly higher costs.

Where do we go from here and how do we improve the living experience of people with dementia and their carers on a daily basis? The next steps are clear. International research shows that carer support is central to achieving effectiveness in dementia care. Carers who can access home relief, day care relief and other community services can keep loved ones at home for longer. This is not only their preferred option but it also helps to lower health care costs and reduce the need for long-term beds. Therefore we desperately need to protect current limited dementia services in the community and extend the basic level of care to families currently in desperate need. We ask the members of this committee to use its influence on the Minister for Health and Children and the HSE to prioritise the existing community services and to clear current waiting lists to avoid carer burn-out. We must ensure that these families can continue to care for loved ones at home.

Strategically, we must build on the experience of other nations such as England, Scotland, Norway and Australia by designating dementia as a national health priority. We need accelerated development of a national dementia strategy with an implementation plan to address the current policy, planning and service gaps so that we can ensure a better quality of life for people with dementia and carers. This is so they can access diagnosis and interventions in a timely fashion, and can have choices in care options open to them while feeling like valued and active citizens.

We welcome the recent announcement from the Department of Health and Children on the commencement of development of a national dementia strategy. However, we urge the committee to give a unanimous endorsement of our call that this strategy and implementation plan be completed by the end of 2013. We ask that the committee make a resolution in this regard.

We cannot solve our economic crisis with a simple approach to cutting budgets without counting the cost to society at large. The basic survival of families coping with caring for their loved ones with dementia must mean something to us as a civilised society. A little help would mean so much; we are only talking about four hours per week. We have to appeal to the morality of providing support to those carers who are being so responsible, so loving and who are yet so scared. We cannot consign thousands of people to illness and isolation because of a lack of money. That is the beginning of an unjust society.

I thank the Chairman and members for their attention and I look forward to their questions. Ms Sarah O'Callaghan, head of public affairs and communications, and Mr. Pat Doherty, head of services, will help me to address them.

I thank Mr. O'Connell. I understand this is his first occasion to appear before the joint committee but I am sure it will not be his last.

I welcome the delegation from the Alzheimer Society of Ireland. Few people have not been touched by the issue of Alzheimer's disease. The public is becoming aware of the challenge of caring for Alzheimer sufferers when they deteriorate to the point where they need hospitalisation or do not recognise their families. I am very familiar with the centre located in my village of Adare and I visit it regularly.

The Alzheimer Society of Ireland meets a developing need but obviously if costs are being cut, its activities will have to be curtailed. Has it already experienced cuts to the funding it received from the State over the past two years? Has the society experienced difficulties in its fund-raising activities? I understand other voluntary organisations are finding it difficult to raise funds in the current economic climate. What are the implications for the society if the trend of cutting resources continues?

Carers groups have expressed concern that the carer's allowance may be targeted in the upcoming budget. Has Mr. O'Connell heard any indication as to whether this will be the case? There are rumours that the half carer's allowance may be reduced. Has he met the Minister of State at the Department of Health and Children, Deputy Moloney? I have a great deal of time for the Minister of State but he is under pressure from the Department of Finance.

I welcome the delegation. I agree with Deputy Neville that this is an area in which needs are increasing. Perhaps Mr. O'Connell can outline how he expects the area to develop in terms of demographics. I welcome that a commitment has been given on drafting a national dementia strategy but the committee should endorse his call for it to be completed by the end of 2013. That appears to be a sufficiently lengthy period for drafting a strategy and consulting interested parties.

It is clear from his presentation that the gaps and unmet needs are bigger in some parts of the country than in others. A strategy would address that issue. I am familiar with the centre in Limerick and the plans for Killaloe. A tremendous amount of work is being done there and the funding provided by the State is at least doubled through the voluntary efforts on the part of the society and home carers.

Several of my colleagues and I recently attended a presentation by the Alzheimer society in Buswells Hotel. One of the speakers was a carer who gave a striking account of what it is like to live with a loved one with dementia. Supporting carers is a major element of the society's work.

Mr. O'Connell stated that the waiting time for diagnosis can be up to four years in Ireland, compared to as little as nine months in Germany. What is the reason for this delay? It must be extremely stressful for carers who have to look after their loved ones in the absence of a diagnosis. How many dementia specific units are operational around the country and what sort of gaps exist in this regard? Waiting lists urgently need to be addressed. How much would it cost to meet the needs of those who are currently waiting for support and access to day care or other services?

I commend the society on its work. It is an important source of support for carers and we are all familiar with people who have benefitted from its services. As a committee, we have to make recommendations that will in turn support the society by ensuring it does not lose funding this year and that unmet needs are addressed by the HSE and the Department of Health and Children.

I thank Mr. O'Connell for his presentation. What sort of work has been done on finding ways to prevent or delay the onset of Alzheimer's disease? The document he circulated to members states that 44,000 people in Ireland suffer from dementia at present and predicts this number will increase to 104,000 in the next 25 years.

I can identify with the points he raised in regard to the question of management, although my county of Monaghan is fortunate in having residential care facilities for the elderly in St. Mary's hospital, as well as the Drumkill day care centre which covers most of the county. Public representatives in my region are anxious to protect these services regardless of what happens to the HSE's budget. I entirely agree that it is preferable to manage patients at home or in the community and that residential care should be a last resort.

I do not see why we should not be unanimous in pushing for the completion of the strategy by 2013 at the latest. It is Government policy to prioritise community care services. Perhaps they are not developing as rapidly as we would like but there is a major shift to the community setting to ensure all the services that can be provided outside of hospitals are made available. On the question of dementia being a national health priority, I can understand the perspective of the witnesses. The difficulty I find is there are competing priorities and it is very difficult to decide which should be identified as the overall priority. As a family doctor I was always of the view that anything which improves people's quality of life should be available immediately. I very quickly learned that this is not the case and as a former Minister for Health, who happened to be in the job in a time much like we are experiencing now, I am very conscious of the question of resources and how they are used. We cannot get away from the fact that additional resources are not there to spend on individual services that we would like to see. The question is one of how to move forward.

There is the question of the relationship between the society and the Health Service Executive. I am a great believer in everybody working in the service; I am talking about the whole service rather than just the Alzheimer Society of Ireland. We need much more co-operation, co-ordination and integration of services to ensure the best service for the people we represent and the best value for money. How co-ordinated is the approach of the Health Service Executive?

With regard to voluntary services, it is interesting that the next group to appear before the committee is the Neurological Alliance of Ireland. There are 28 voluntary groups involved with the alliance, including this society. If they have discussed co-operation and co-ordination, is it possible that better value for money might be available throughout all these services? They are all priority services and to isolate one, saying that it should be a priority over others, would be difficult. There are serious problems coming down the track in every country in the world in the provision of health services, even if we are to stand still. We can look at the number of people with dementia, the cost of new drugs coming on stream, new technologies and developments in medicine but I wonder how in 2036, which has been referred to, countries will be able to provide health services and care for people. These are questions we must address.

I support the work being done and I am fully aware of the work done right back to my own days as Minister for Health. The society was in its infancy then. I would be glad to support more rapid development of community care and I hope the strategy plan will be completed in 2013, with a way found to ensure there is no reduction in front-line services for people suffering from dementia.

I welcome Mr. O'Connell, Ms O'Callaghan and Mr. Doherty. When we speak about disability, disease or other progressive conditions, we always consider those with hearing problems as having an invisible disability. Alzheimer's disease is a more genuinely invisible condition. Not alone is the person invisible but those who care for him or her become invisible as well. On that basis the organisation should be commended as if it did not constantly promote the issue, making us look at ourselves and ensuring we deal with Alzheimer's disease issues, those affected would have no voice. That is very important. We have come a long way in dealing with mental health issues in this country and it is not the taboo subject it used to be. There is a still a taboo attached but not to the same extent.

It is not our job in this committee to consider how initiatives are financed. We examine the merits of a service or the need for a service to be provided. In this instance the argument is clearly won. We are starting from a very low base when one considers developments in other countries and the recognition of how Alzheimer's disease will affect all of us into the future.

The sadness of Alzheimer's disease is what affects people, with the gradual disappearance of the afflicted person to friends and relatives. I know somebody who dealt with a husband suffering from very early onset of the disease. She could see occasional flashes of the person she knew and it would bring joy to her. There is a caring element to the problem and a carer may experience burn out and give up. With a little help and the support given by the society, the experience can be completely different.

How much State funding does the society receive? I listened to the presentation, which indicated €18,500 would mean the loss of a service to four families, and that is clearly the loss of one job. The society does not get enough funding but what is the figure? Do local regions of the health service contribute? What is the difference in this respect?

I thank the delegation from the Alzheimer Society of Ireland for its presentation and echo the comments of previous speakers. One positive action of the society is the raising of awareness about dementia and the perceptions of it. Will the witnesses give us an indication of the incidence of dementia in Ireland? With many disabilities in this country it is very hard to identify raw figures. Do the witnesses have any idea of the level of dementia in the country? Is the incidence in Ireland higher than in other European countries? As we live on an island there are associated issues.

I am interested in the point made on the choices in care, as it is crucial to give families and carers opportunities for respite. The point was made about carers experiencing burn out. The presentation made the point that an economic evaluation identified that community support initiatives for respite and day-care support were far more cost-effective than long-stay accommodation. Could the committee be furnished with those figures, as it is important to make that case? All of us understand that it is far more cost-effective to keep people in their own home, where they want to remain, for as long as possible by providing adequate support to carers.

Has a submission been made regarding the habitual residency condition? There appears to be a problem whereby sons or daughters of people with dementia who return home from the United States are being denied carer's allowance purely because they have resided outside Ireland for some time. The focus should be on the level of care that is being given, rather than on where such people spent last Christmas.

Deputy O'Hanlon mentioned the level of co-operation between the HSE and the society. Perhaps the delegates will elaborate on this point in respect of another organisation that exists in the west of Ireland, namely, Western Alzheimers. What co-ordination takes place between the HSE, Western Alzheimers and the Alzheimer Society of Ireland regarding the provision of services in the west of Ireland? On that subject, I note that the only place on the map of the society's service network on which there is not a red dot is my native County Roscommon. Perhaps the delegates can explain this absence because although County Roscommon has a high dependency ratio, it lacks a dementia unit.

Residential services historically have been provided in psychiatric hospitals and someone who had dementia was put or shoved into a psychiatric hospital. I note that as properties are disposed of, funds are becoming available although the precise amount remains unknown. What provision has been made for dementia services from the funds that are being released from the disposal of property associated with the psychiatric services thus far? Alternatively, is dementia now being shoved into primary, community and continuing care, PCCC, and away from mental health and consequently is it losing out on the double?

I also wish to be associated with welcoming the Alzheimer Society of Ireland and compliment it on its work and on its voluntary work in particular. There is not a county in Ireland in which it is not providing services, particularly carers. I agree fully that carers' support is essential in respect of Alzheimer's disease and that early intervention is highly important. For years, people did not understand or recognise the problem posed by Alzheimer's disease and are only now beginning to realise the impact it has on people and on the elderly in particular. Community services are very important, particularly in isolated areas, although I acknowledge one can be similarly isolated in urban and rural areas. As I come from the country, I am particularly concerned about people who live on their own and who might not receive the level of care that would be provided within a family.

While much of what I had intended to ask already has been raised, I have a query on early intervention with patients. Although there is no cure for Alzheimer's disease, if it is detected in time can intervention prolong the period before the disease takes effect? In particular, I note it affects 44,000 people who are over 65, as well as 4,500 younger people at present. One now hears of people who develop Alzheimer's disease and dementia in their 50s, which was not heard of previously. Is there a medical reason that people appear to develop Alzheimer's disease at a younger age? Deputy O'Hanlon asked about medical care centres that are being rolled out nationwide at present. Should Alzheimer's units be included in such day care centres as it now is a common disease?

On the amalgamation of voluntary services, I note the Neurological Alliance of Ireland will appear before the joint committee next. Should there be greater co-operation among groups as they all are working in the same field? As for budgets and resources, they are under major strain and will continue under such strain in 2011 and for the following four years. All members will support attempts to maintain and keep in place the existing budget for the society in so far as possible and will try to use their influence with the Minister in this regard. However, the budget is under great strain at present. I will await the responses.

I join in the welcome to Mr. O'Connell, Ms O'Callaghan. and Mr. Doherty, as well as to their colleagues who also are present. I join them in commending to the joint committee the view that people with dementia and their carers will have direct access to the workings of the strategy expert advisory group in the preparation of the national dementia strategy. That is the least that the joint committee should support. The work of the expert advisory group certainly should be accessible in a consultative way to people with dementia and carers across the board, as that would enhance significantly its prospects of presenting a strategy rooted in the experience.

I note that €850,000 was removed from the budget for the current year 2010. While I note the society's presentation states how this was addressed, is there a way to provide an outline of how such cuts have had an impact in real terms in the current year as a means of ensuring the committee is unanimous in its lobby to prevent further cuts in 2011? It is important for members to bear in mind the figures the delegates have outlined because they must take on board that cuts cost more. This is an important point to bear in mind. They cost more in terms of the real care provision in respect of people being cared for in the home and in community settings. However, the alternative will cost more because of the cohort of people who are waiting to be assessed at present. A significant number - the society's submission suggested approximately three in ten - will present in a crisis requiring institutional support and care. Consequently, the real cost, as against the comparative figures of €4.6 million, will be in excess of €12 million to address this need. It is a "no-brainer" as ultimately, ensuring that sufficient money is provided to care for people in the home and community settings constitutes a saving in real terms. Moreover, it unquestionably would be the preference of the overwhelming number of people and certainly those in all the earlier stages of ongoing Alzheimer's disease and dementia.

The delegates mentioned a current figure of 4,400 people under 65 years of age but can they break this down further? What is the earliest age at which the presence of dementia is known? Are any of the aforementioned 4,400 people, who have been noted to have experienced various levels of dementia, in institutional care at present? What proportion of the younger people under 65 years of age are in specific institutional care, as opposed to receiving care in the home or community? I would welcome whatever responses the delegates can make and I join other members in endorsing roundly their case and in wishing them every success in the society's continued much valued and appreciated work.

The delegates can hear that members strongly support the case they have made. All members have given examples with the exception of Deputy Naughten, who does not yet have a service in County Roscommon. Perhaps this is something that could be considered. However, all members have the experience of seeing services within their respective constituencies. In my constituency of Kildare South, there is day care centre provision in Monasterevin, as well as a residential centre at St Vincent's Hospital, Athy, and that work is valued. The delegates are also correct to challenge members regarding the budgetary situation we face. We all accept that a significant contribution to savings will have to be made in the area of health. It was put to us that we must decide what to protect in the first instance. The way to approach this problem is to identify essential services such as that of the Alzheimer Society of Ireland and work back from this to put in place systems to achieve savings.

I was struck by the similarity between the case the delegation outlined to us and that outlined to us in the past month by the Jack and Jill Foundation which is working to support people in the community at a very low relative cost.

With regard to the figures mentioned by the Alzheimer Society of Ireland, is the annual cost per service user €4,600? Reference was made to a loss of service for four users in the order of €18,000. This figure seems to be fairly small considering the cost the State would have to pay for a nursing home facility for a person who can no longer be cared for in the community. I assume the cost of that ranges from €800 to perhaps €2,000 per week, depending on the level of care.

The Alzheimer Society of Ireland is putting a challenge to us but it is one that needs to be put to us. We support the strategy unanimously and agree on the need to have it implemented by 2013. We must do more than this and work politically to determine what we can do to ensure that the type of front line services being provided are protected.

I invite Mr. O'Connell to answer some of the questions. There was a great deal of repetition. There was a key question on research. Why have we such a high incidence of dementia? Why is the age profile decreasing?

Mr. Maurice O’Connell

I will not aim to answer all the questions myself. We may cut in on each other as we answer some of them. I will deal with the last one first. Recently a joint commission on neurodegenerative disease was organised by the European Parliament. The HRB has come in under that and has begun to direct all the research money associated with neurodegenerative diseases, especially Alzheimer's disease, into one pot. That is a first. Many of the pharmaceutical companies are spending millions upon millions of euro trying to find a cure. There is no cure at present. No pharmacological intervention is anywhere near coming to fruition. If it were, it would only comprise part of a solution.

With regard to research, Ireland has to play its part politically and economically in adding to the big pot across Europe. However, it will not solve the problem of Alzheimer's disease and dementia care. The only solution we have at present is care.

We can provide a table that will indicate the age profiles. People with Alzheimer's disease range from those in their early 30s – I know of such a case - to the old. The disease does not have boundaries and cuts across class and socio-economic groups. There is no one reason for this.

We have a really good opportunity to look again at further genetic programmes with a view to finding solutions. Again, the problem is so vast that we are only touching the surface. The only response that we know, medically and socially, is care that provides quality of life for the individual.

Let us consider the cuts. In 2008 we were cut by 5% in general but more in some areas, depending on the HSE area. Last year we were cut in line with the cuts to public sector pay. Most of the cuts were through salary cuts, with the exception of one or two problem areas in which the HSE had to cut further. Generally, we sustained the cuts by decreasing salaries.

Ms Sarah O’Callaghan

A total of €850,000 was cut from the budget last year. As Mr. O'Connell stated, this was the second year in which this occurred. In the first year we looked at non-pay costs and implemented pay freezes or income increases. Last year our only alternative was to consider salary cuts because we provide a staff-heavy service. This leaves us facing the reality that there is very little flesh on the bone. As it is, we bring 23% of a multiplier effect to our HSE funding through fundraising. We add to that through volunteer input to service delivery.

If we are subject to further cuts in the upcoming budget, we will reduce capacity to fundraise and engage volunteers. Taking up on what the Chairman said, it is very important that we rise to this challenge. The impact will be quite considerable and the cost, at just under €5,000 per client per year, could be the difference between somebody being able to stay at home and not being able to do so.

Mr. Pat Doherty

With regard to service provision, we provide more than 115 services throughout the country. Many are day care and home care services. There are places where we are not able to provide the minimum of two days of service. It is very important to establish more day care services. This is where some of the challenges lie. In some of the counties in which we are less represented, we are working constantly with the HSE to examine how we can establish services.

Some members asked about co-operation with the HSE. At local, regional and national levels, we are constantly working with the various divisions of the HSE to determine where gaps exist and what needs to be done to fill them, including through the provision of more day care or home care.

Our figure of €4.7 million concerns a range of services. In rural areas we have developed, through innovation, services such as the home-from-home service in Leitrim, which is ideal for very isolated communities in the west. In some counties, we only have one day care service. Although we provide a bus service, it is very challenging for people to sit on a bus for more than an hour travelling from one part of the county to the next. This is why we see the need to develop more day care services.

Ms Sarah O’Callaghan

Demographics have been raised by a number of members. In Ireland today, we have not compiled incidence rates. Prevalence figures are based on a European statistical formula that has been applied to our census figures. We know that the highest risk factor in developing dementia is age. Some 5% of those over the age of 65 have the condition and the incidence doubles every five years beyond that age. One in four people over the age of 80 are likely to have the condition. Using this formula, we estimate that it affects 44,000 people in Ireland and, as we explained in our briefing document, this has a ripple effect on one family carer and at least three family members per sufferer. As members will be aware, Ireland has one of the fastest growing older populations in Europe. This is why we estimate that dementia will affect 104,000 by 2036, with a knock-on effect on family members.

Baseline research is required in Ireland to find out the numbers who are living in the community and, hopefully, determine incidence rates. The society is pushing for this work to be done and I hope we will be able to discuss it with the committee at some point in the future.

Mr. Maurice O’Connell

I wish to speak about the relationship between the society and the Neurological Alliance of Ireland, NAI, which will make a presentation directly after us. We are one of the founding members of NAI because the only way people under 65 could be treated was by presenting to neurologists, who were completely under-funded. People under the age of 65 fell into the gap between disability, psychiatry and care for the elderly. We campaigned for the appointment of neurologists specifically to treat the 4,000 people under the age of 65.

The voluntary sector is an amorphous group of what are often called do-gooders who work in the heart and soul of our society. It has challenged the State on many occasions to invest resources where they are needed and it has called the health services to task. It is the voice of the people as well as a collaborator with the State. Killing voluntary organisations like a cancer because of monetary pressures could result in the loss of the health service's lifeblood.

Does Mr. O'Connell see a role for primary care centres in treating Alzheimer's disease?

Mr. Maurice O’Connell

It is important that primary care services become the first port of call for family members. It behoves us to increase understanding among general practitioners and community nurses about the symptoms of Alzheimer's disease so they can fast-track patients into services. The reasons for the current delays is a combination of fear on the part of families, stigma and reluctance on the part of GPs to make a diagnosis because, for example, Mary will no longer be able to drive to the village. However, the danger is that people will be further stigmatised by being labelled. It is essential that we educate doctors, nurses, physiotherapists and speech therapists if we are to provide adequate treatment for dementia sufferers in the community.

I thank Mr. O'Connell and his colleagues. They should feel free to correspond with the committee if they wish to clarify further matters. We will consider their proposals and make recommendations accordingly. We look forward to remaining in contact with the society and supporting its valuable work.

Sitting suspended at 4.25 p.m. and resumed at 4.30 p.m.