Diarmuid Wilson (Fianna Fail)
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I welcome the Minister of State, Deputy White, to the House. He is here almost as often as when he was a Senator.

Susan O'Keeffe (Labour)
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I move:

That Seanad Éireann:acknowledges the Government?s commitment to the introduction of capacity legislation in line with the UN convention on the Rights of Persons with Disabilities and the progress in relation to that legislation;
reiterates the importance of the right of those people with disabilities not to have their decision-making skills interfered with or reduced;
notes the Government?s commitment in the Programme for Government to the development of a National Dementia Strategy;
recognises the work being done towards the publication in 2013 of the National Dementia Strategy, NDS, and urges the Government to ensure that that strategy recognises the societal rather than the medical context of dementia and Alzheimer's;
acknowledges the preliminary work already carried out for the National Positive Ageing Strategy which commits to setting out a common framework for the development of operational plans by a number of Government Departments which will clearly set out each Department?s objectives relating to older people;
acknowledges the establishment of the Cabinet sub-committee on social policy;
notes the critical role played by the 50,000 family carers of those living with dementia and Alzheimer's in our communities;
acknowledges the principle set out in the National Carers? Strategy published in July 2012 that carers should be supported in managing their physical, mental and emotional health and well-being, and the importance of this Strategy in relation to the care of those with dementia;
note that the number of people living with dementia will treble from 42,000 in 2012 to an estimated 140,000 in 2041;
notes the estimated current cost of dementia care at ¤1.6 billion;
calls on the Government to ensure that:

-- the NDS ensures that provision for dementia and Alzheimer's must be embedded across delivery of all clinical care;
-- the NDS supports the appointment of a clinical director for dementia in the HSE;
-- the necessary resources to implement the NDS are provided;

further calls on the Government to ensure that:

-- the NDS meets the health and social needs of the care-givers of those with dementia;
-- the NDS will properly account for the needs of those living with early-onset dementia; and
-- the NDS reflects a 'whole of government' approach.

"Dementia" is a word that we use, but do we stop to consider what it means? It means the loss of thinking. This is worth thinking about for a moment. It is our capacity to think that sets us apart. Our capacity to reason is at the core of who we are as human beings. Cogito, ergo sum, as Descartes once said. We have been saying it ever since because of its simple and direct truth.

Each of the 42,000 people living in Ireland with dementia has a tale to tell about how his or her thinking is lost or on the way to being lost. These people have a story to tell about how they are losing themselves. The National Institute of Neurological Disorders and Stroke, NINDS, defines dementia as:

[A] word for a group of symptoms caused by disorders that affect the brain. It is not a specific disease. People with dementia may not be able to think well enough to do normal activities, such as getting dressed or eating. They may lose their ability to solve problems or control their emotions. Their personalities may change. They may become agitated or see things that are not there.
Alzheimer's disease is the most common form of dementia, a group of disorders that impairs mental functioning. At the moment, Alzheimer's is progressive and irreversible. Abnormal changes in the brain worsen over time, eventually interfering with many aspects of brain function. Memory loss is one of the earliest symptoms, along with a gradual decline of other intellectual and thinking abilities, called cognitive functions, and changes in personality or behaviour.

Much money is being spent worldwide on research to cure or contain Alzheimer's disease, ranging from brain imaging techniques to identify brain changes, medications to treat the biological changes in the brain, and research to try to manage the behavioural symptoms that cause so much difficulty. Researchers in the US have identified a particular protein that becomes toxic in the brain of someone with Alzheimer's disease and believe they may be able to develop a treatment that would go some way towards alleviating the symptoms and-or halting the progression of the condition. We cannot wait that long for research or rely on it to save us or to stop the numbers increasing. We must not wait. Recently, the World Health Organization, WHO, published a document calling on countries to treat Alzheimer's disease as a public health priority.

Many of us have heard stories of those with Alzheimer's disease. Some of us have experienced it at first hand in families. Today, 50,000 carers, especially family carers, know that they cannot wait for research to help them with the care of their loved ones. I pay tribute to their enormous efforts, work and dedication.

I note and welcome the Government?s commitment to a national dementia strategy in the programme for Government. Many matters are vying for the attention of the Cabinet, but these statistics are well known.

The Minister of State and his colleagues know the urgency of the matter.

I urge that the development of that strategy place dementia not just in a medical context, but in a societal context, where those who have dementia live, because of the impact it has on family and friends. There is a need for a response from society to those with the condition. Even if researchers could in the morning conjure up great new drugs, they will never replace the need for a strategy. A lack of strategy will always imply a more haphazard and less efficient approach, even with the best will in the world, and there is plenty of really good will out there, banging the drum for better care and treatment.

The strategy will only work if the medical aspect is combined with joined-up thinking that comes from placing this very firmly in a societal context. The national dementia strategy will require a whole-of-government approach. It may fall in the lap of the Minister of State to drive it but reaching out to other key Departments, including those dealing with housing, transport and health, among others, and to voluntary organisations who do so much, will be the way to make it succeed.

What might a strategy look like? Specifically, a strategy needs to offer common standards of care for dementia. Those standards need to be derived from clinicians, experts, academics, voluntary groups and those with experience of dementia and the care of dementia. Ensuring that those with dementia are part of the solution is key to making any strategy work. It will also ensure that their dignity is at the core of the strategy. Person-centred care - long espoused by the Alzheimer Society of Ireland - should remain central to the strategy, and the strategy must also ensure rights to treatment. Carers and those with dementia must be treated with dignity and the standards need to reflect that.

The strategy needs to urge a move away from high cost, long-term care to community-based services in which those with dementia and their families have a role to play, as many do now, although not in an organised, recognised and strategic way. Early diagnosis will be key to making this model succeed and it should be central to shift treatment away from an over-reliance on drugs. Continued research into dementia should form part of any strategy, as should the good management of all data relating to the care of those with dementia. The strategy should urge the appointment of a clinical director within the HSE with specific responsibility for dementia, and there should be specific training of staff, who work with those with dementia, and who should improve their knowledge and skills. It should also recognise in particular the needs of those with early-onset dementia and address their needs.

A budget ring-fenced for the care of dementia would be ideal. As it stands, the budget is not ring-fenced and the true cost implications of treating dementia in Ireland are not currently known. Estimates suggest that ¤1.4 billion is spent directly and indirectly on the care of Alzheimer's disease. The strategy is not a call for a budget but it should rather motivate a whole-of-government rethink which must include gathering the data that gives not just the cost of care, but the way in which care is delivered and the impact of that care. We must seek ways to spend resources more carefully and efficiently.

I acknowledge the work being done for the national positive ageing strategy, and I am confident that the obvious overlap between these two strategies will benefit both. The forthcoming capacity legislation will form another vital pillar of support for people with dementia and many others too, including those with intellectual disabilities and acquired brain injury. Ireland has already signed up to the UN Convention on the Rights of Persons with Disabilities but to ratify we must move to this legislation very quickly.

The basis for the legislation must be the "will and preferences" of those directly affected and people with dementia or any other condition or injury must have the right not to have their decision-making skills interfered with or reduced as they currently are on a daily basis. Remarkably, the 1871 Lunacy Act is still with us. It is time to jettison it and the production of a national dementia strategy would be a good time to send the signal to herald in the capacity Act, which would encourage and promote people making their own decisions or, where necessary, supported decisions.

The Alzheimer Society of Ireland in particular has done sterling work over many years and its national conference is taking place tomorrow. I welcome the opportunity to speak to this very important motion, which fundamentally is to underline the urgency of this strategy for the thousands who are affected and the many thousands who will be affected.

Denis Landy (Labour)
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I second the motion. I wish to share time with Senator John Kelly.

Diarmuid Wilson (Fianna Fail)
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Is that agreed? Agreed.

Denis Landy (Labour)
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I welcome the Minister of State to the House and thank him for coming here to take this very important debate organised by the Labour Party. I welcome Ms Gráinne McGettrick and Mr. Maurice O'Connell, CEO of the Alzheimer Society of Ireland, who are in the Gallery.

I acknowledge the work done by the Government to date on the dementia issue and the willingness of the Government to put it into the programme for Government. It has started to work, by way of a review, on dementia in our society. Senator O'Keeffe has provided a very detailed outline of the position in this country. I will take a different perspective, which is from personal experience. Anybody who has seen the effect of Alzheimer's disease in a family member or a close friend will know it is probably one of the worst conditions anybody could have the misfortune to encounter.

Currently in this country there is, unfortunately, almost an unwillingness to accept that the initial problems with Alzheimer's disease exist. We can end up with cases where the problem has gone too far, and the only solution in such cases is acceptance by family and the affected person, if the person is capable of it. That leads to nursing homes or long-stay hospital cases.

We must ensure that we put a strategy in place, and we will begin work on that very soon. The strategy must deal with a number of specific elements, including prevention, delaying the illness, early diagnosis and awareness within communities that people may have symptoms of Alzheimer's disease. People must be aware of this, and much good work has been done by the Alzheimer Society of Ireland and various other groups around the country. We are getting to grips with the issue but we must put such work into the strategy, along with a care management element. We must bring services out into the community and examine residential care as part of the strategy. The strategy for dealing with Alzheimer's disease must be completely transformative.

This Government has the willingness to act. We hear about budgets every day of the week which relate to every government item but a budget must be ring-fenced for this issue. As I stated earlier, it is probably one of the worst illnesses that anybody could encounter. I welcome the Minister of State's presence and await the rest of the debate. I hope I will have an opportunity to speak again at the end.

John Kelly (Labour)
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I welcome the Minister of State to the House and congratulate him on his recent elevation as I have not yet had the opportunity to do so. I wish him well in his post. I am from County Roscommon, which has the highest rate of dementia per capita in the country. At a recent conference on dementia, it was estimated that 4,000 people in the country will be diagnosed every year with the condition.

I have worked with an organisation called Western Alzheimers for a number of years and its biggest difficulty - a lack of funding - arises from the fact that it already deals with 381 families in Galway, Mayo and Roscommon. Home care packages are key to this. I bat for those three counties because that is the area where the association operates.

It is crucial there are no funding cuts to home care packages in those areas, in particular in my area, for which I have just given the figures, because we have the highest rateper capita.

I am a big supporter of Western Alzheimers and have raised funds for it. Part of its service delivery is to raise funds to deliver a service, but we are going through hard times and people do not have the money any more to contribute as much as they would like to. I have always complimented people who have always given to good causes, even in hard times. It is crucial that Government funding is put in place and that there are not cuts to home care packages.

I refer to the community employment schemes. They have no difficulty getting approval for CE employees but they have difficulty finding people to do the work. Many lone parents, who were allowed to keep their lone parents allowance and get a community employment allowance, were taking up those jobs and were very complimentary of them. That facility has been taken away and they must depend entirely on CE money. Community employment schemes are therefore finding it very difficult to get CE workers.

On the economics of not funding home care packages and respite services and putting people into high dependency beds in selected nursing homes, not every nursing home can deal with dementia patients. Given the small cost we are talking about, it makes economic sense to keep these people at home with the services the likes of Western Alzheimers provide.

Mary White (Fianna Fail)
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I welcome the Minister of State and congratulate him. It was very moving listening to Senators O'Keeffe, Landy and Kelly speaking about this frightful disease. I fought to maintain the public nursing home in Crooksling, which is close to Tallaght. We got a reprieve from the Minister, Deputy Reilly, but it was my first experience of seeing 80 patients, who suffer from Alzheimer's, in one long room. It was a horrific experience and it brought me back to reality. This issue should be addressed. If one has not dealt with people who have Alzheimer's, it is very difficult to empathise with the situation.

Some of my colleagues know that, in 2006, I produced a policy document, A New Approach to Ageing and Ageism, and it gives me pleasure to support this Labour Party motion. I was honoured to be asked by Deputy Martin to produce the Fianna Fáil policy document on older people, active ageing and quality care. It is a Fianna Fáil policy paper to promote the human potential of, and human rights for, older Irish citizens.

Over six months, during the course of my extensive research for the preparation of this document, I learned a great deal about the afflictions and issues which face elderly citizens every day. Dementia is an extremely distressing condition for those who suffer from it, and it causes much anguish and pain to their families and close friends. The situation presents a problem of great magnitude and a formidable challenge to health and social services.

The shocking fact is that, currently, roughly 41,700 people in Ireland suffer from dementia, more than 26,000 of whom live at home. What is even more shocking is that, every year, approximately 4,000 new cases arise. This is a clear indicator that we must, as a matter of urgency, put provisions in place within our health system to tackle this terrifying epidemic. There are no signs of this growing problem abating. It is estimated that a major increase in the number of people with dementia is likely to occur after 2021, with the numbers growing to between 141,000 and 147,000 by 2041.

When one considers that dementia costs more than cancer, heart disease and stroke combined, at a current cost of ¤1.6 billion per annum, it is clear that this is a severe issue which could cripple an already damaged health system. An emphasis must be placed, therefore, on the development of co-ordinated, multi-layered and well-resourced services which will be responsible to the individual needs of people with dementia and those who care for them.

Fianna Fáil outlined the complexity and range of issues involved in the effective management of dementia in the 1999 action plan for dementia. Following the publication of this report, community supports were enhanced and increased levels of funding were made available to develop a wide range of community services, including community nursing, paramedic and home help services, and support to family carers. During our time in office, enormous strides were made in the concept and practice of services for older people as we took the view that there was an intimate link between the care of older people and that of people with dementia.

The need to provide support and dignity and independence through the provision of the appropriate people and carers was heavily stressed during our time in office. The Government must make the dramatic changes which are clearly needed to aid the 41,700 people suffering from dementia, to halt the inevitable growth of this affliction and to help the countless family members and close friends who incur most of the responsibility of care, which is nothing short of a disgrace.

Jillian van Turnhout (Independent)
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I welcome the Minister. I thank my Labour Party colleagues for tabling the motion. It is great that there is harmony in the House as everyone welcomes the initiatives and strategies to deal with mental capacity legislation, dementia, Alzheimer's and positive ageing. I would like to move beyond words and explore ways we can make the issues before us tangible. We can all say these words but we all know action speaks louder than words.

I would like two issues to be fed into the national dementia strategy before it is published. First, expert opinion is that earlier and accurate diagnosis is important, as colleagues have said, for the individual but also for family members because of what such a diagnosis will deliver for them and it is imperative that coming out of the implementation of the strategy, resources will be put in place or reconfigured that will result in a nationwide health service, which provides timely diagnosis and provision for early intervention supports and services. A crucial component of this will be access to a uniform assessment of needs for both the patient and their carer. My understanding is that the HSE is piloting a single assessment tool, which will need to be such that it provides the necessary early indication of the onset of a dementia and acts as an early detection mechanism which leads on to the necessary follow up of interventions and support services.

Currently, the first port of call for most patients who present themselves to our health service with possible symptoms of a dementia is at GP level. Making a diagnosis of dementia is not easy and Irish research, including anecdotal evidence from my local GP, has shown that many GPs, like their counterparts in other countries, are reluctant to get involved in the area because of lack of confidence and training, stigma, difficulties differentiating normal ageing from the signs and symptoms of dementia and resource issues. There is a requirement, therefore, to ensure all health care officials at GP, primary care or residential care levels are skilled in the detection and diagnosis of dementia and are suitably equipped with the necessary people skills to handle the delivery of the diagnosis to patients and their families.

The second issue relates to community-based services. Following on from the early diagnosis of dementia and consistent with the Department of Health?s stated policy to shift the emphasis of care back into community settings, there is a need to ensure these settings are age and dementia friendly. Access to clinical dementia experts at local community levels will form the basis of key community services for those with dementia and their carers. People who need and receive community care, whether through home help, respite, home care packages, hospice and palliative care services, value these supports enormously. However, access is discretionary, unequal and problematic. The root of this issue is the lack of legislation to underpin access to these services. There is no statutory entitlement to home care and community care services. Since access is discretionary, it is extremely difficult for individuals, families and carers to get information and reliable access at critical points for example at discharge from hospital, onset of disability, diagnosis of dementia, long-term or life-limiting illness. I agree with the Ombudsman who observes that "people do not know where they stand in terms of their entitlements and in terms of the HSE?s obligations to provide services". I also support the call made by Older and Bolder for the inclusion, as part of a national dementia strategy, of the development of long-promised legislation to establish a clear right to community care. Only this can provide the clarity and security to individuals and families.

I stress that I welcome this motion and I recognise the Government?s achievements in this area such as the publication of the national carers strategy in 2012, which was broadly welcomed by carers groups as an aspirational document that provides a solid basis for informing future policy decisions. However, I also note the reaction from some groups I work with in the areas in question that a motion such as this is nothing more than a series of platitudes unless accompanied by action such as the tangible recognition of the vital work carried out by family carers. While 50,000 carers are responsible for Alzheimer's and dementia patients, 137,000 other carers look after other people with disabilities spanning all age groups from children to the elderly. Recognition of their work can be shown by the provision of adequate and ring-fenced resources, including payments to carers, which should not be seen as income supports but as direct supports for their caring duties.

We are all conscious that we are approaching budget 2013. The Minister for Social Protection recently gave us assurances that core benefits will be protected but we are still wondering what are core benefits? For example, is the half rate carers allowance a core benefit? I refer to the funding sources for carers, which include the Department of Social Protection, which covers benefits and allowance; the Department of the Environment, Community and Local Government, which administers the housing adaptation grant; and the Department of Health, which deals with hospital and respite care. When I consider this, I wonder whether the citizen or the Government is at the centre of policy, as he or she must constantly run around. He or she has to be assessed several times before a decision on his or her care and he or she must repeatedly go through his or her family history.

I wonder if we can reconfigure resources to put the patient and the carer at the centre, so that we do not waste resources.

Capacity legislation is mentioned and I support the idea of doing more. I advise the Minister to read the document prepared by 15 stakeholder organisations on essential principles of Irish legal capacity. Advanced care directives are legal in Ireland but do not enjoy statutory footing. It is important that people in an already disempowered position, facing dementia or the onset of Alzheimer's among many capacity diminishing conditions, are not further disempowered by uncertainty about whether their health care wishes will be respected. The Minister for Health provided an answer on 8 June to the effect that advanced care directives are not on a statutory footing. Can we get clarification from the Department of Health and the Department of Justice and Equality to work in a co-ordinated fashion to ensure a section on direct care directives will be inserted into the forthcoming capacity legislation?

I commend the community-based project of the Irish Hospice Foundation, Think Ahead, currently being piloted in Louth and Limerick. It encourages people to think about, discuss and record their preferences for future care. Advanced care directives are an issue we must talk about in Ireland.

Sean Barrett (Independent)
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I commend the Labour Party, Fine Gael and Fianna Fáil Senators, the Independent Senators nominated by the Taoiseach, on the all-party agreement on the motion. Although I will support the motion, I have a small quibble with one sentence in it, as I wonder whether it despairs too much: "[T]hat strategy recognises the societal rather than the medical context of dementia and Alzheimer's". Would there not be a high return on research when we consider the cost of ¤1.6 billion and the 42,000 people affected by it? There is a large research budget and it seems to be a priority to see what we can come up with and whether we can form links with exercise, drugs, diet, the environment, lifestyle, counselling and positive mental health. We all get older and it is not an illness. It will happen to us and, not to medicalise it unnecessarily, we have a very large drugs industry with which the Department negotiates. There is some relationship there and we give them a good price. Do they have international research that might help the Department? Can we head it off by the appropriate medical treatment and research?

Ireland has a particular problem, as Senator Kelly said. Social studies research reflects the heavy rate of institutionalisation in the past. There were huge mental hospitals in Ballinasloe and Mullingar. Are we too deeply in that tradition or are there more positive ways of dealing with it? What would follow if the Minister and his Mediterranean colleagues got together? Countries in the Mediterranean seem to treat old age differently and there may be some hope in that.

Senator Mary White is proposing legislation to abolish compulsory retirement. Can we use research, intelligence, contacts with the drugs industry and the Minister's contacts with Mediterranean countries and eastern Europe so that we do not have to deal with dreadful consequences for patients and relatives? In places like Georgia, people live very long lives and do not experience these problems. Rather than accepting that there will be these sick people and having to provide them with accommodation care, should we refuse to accept it as inevitable?

I asked people in alternative medicine whether the decline of old people could be arrested and they responded that it would be very difficult. Perhaps there is some hope and scope in the large research budget of the Minister of State at the Department of Jobs, Enterprise and Innovation, Deputy Sherlock. There may be a return to shifting some of it and getting into the best international research where this is a problem. This will help the Minister to cater for disasters that happen to people and their families but to try to head some of them off before they happen and take preventative measures to promote positive mental health. We would support the Minister under such circumstances, as I support this motion. The motion contains a tinge of accepting this as inevitable and perhaps we can find scope to assist the Minister so that it is not inevitable and we can combat the problem.

Terry Brennan (Fine Gael)
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Cuirim fáilte roimh an Aire go dtí an Teach. I welcome this Private Members' motion and congratulate those responsible for it. It will have cross-party support. A report was published in January of this year, public consultation was completed in August and submissions are currently under review with a view to establishing a working group to develop the strategy by 2013. I hope the working group will have its work completed sooner rather than later. I congratulate Senator White on her work for the aged.

There are over 41,000 people living in Ireland with dementia and the projected increase in the number of people with the condition is such that it will reach 140,000 to 150,000 before 2041. The first stage was to assemble the research and evidence on which the policy was developed and this was completed this year. A research review for Ireland's national dementia strategy was presented to the Minister for Health and published in January. A summary of its key findings are set out. The next stage set out the publication and consultation process and the closing date for submissions was 31 August. Officials are examining the responses. I am trying to get the action group working as soon as possible.

The HSE provides a range of services for people with dementia, including primary care services, home support services, daycare, respite, housing with care and continuing care services. Carer support groups have been established across the country. There are approximately 42,000 people with dementia in Ireland, which is a substantial population. Some 26,000 of them live at home. I had the experience with my late father, God be good to him, who died when he was 93 years old. We cared for him in his home for as long as we could. At one stage, he had to go into the local nursing home for three weeks and every single day he wanted to be at home and to die at home.

A major increase in the number of Irish people with dementia is expected, due to our ageing population. Numbers are expected to increase to 147,000. Our strategy must be far-seeing over the coming 30 or 40 years, a crucial period. The cost of dementia is approximately ¤1.69 billion per year, as stated by Senator Mary White. There is no doubt that cost will increase and we should allow for the anticipated costs and the anticipated population increase for those with dementia.

Recently I read, I hope I am correct, that it costs approximately ¤40,000 per annum. I am not complaining about the cost. These people have made significant contributions to the country for 60 or 70 years and we must look after them. Somebody mentioned early diagnosis. In the case of my father I honestly did not see it happening. He was a man who was active, walked, read and kept up to date with everyday occurrences and suddenly it happened. One will probably say it will happen to every aged person but that is not the way it should be.

The recent review suggests that community services in Ireland are underdeveloped, inequitable and fragmented with only a small proportion of people with dementia availing of critical services, day care, public health, nursing home, care packages, respite, etc. As already stated, a greater number of those people want to live at home.

David Cullinane (Sinn Fein)
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I welcome the Minister of State. I commend Labour Party Senators for tabling a motion which has strong sentiments which I fully support. It is encouraging when Government representatives have an opportunity to table motions in Private Members' time, that they have substance and deal with important issues. I am impressed by the wording of the motion which I do not think anybody in opposition could have framed any differently. I am pleased to pledge my party's wholehearted support to the motion. Government and Opposition parties have called for a positive ageing strategy and a national dementia strategy for many years. In the past a number of joint motions were supported by Sinn Féin and the Labour Party which called for the implementation of these strategies.

In the other House last week, Sinn Féin used its Private Members' time to table a motion on home help and home care services. One of the elements of the motion was the call for the national dementia strategy to be ratified before the end of 2013 and likewise a national positive ageing strategy. That is something we called for during a constructive engagement with representatives of older people and older people themselves through the Seanad Public Consultation Committee on the rights of older persons which took place in this Chamber. A report was published which the Minister should take on board when examining this area as it dealt with a whole range of issues which affect older people. In the motion we supported proposals relating to quality standards for home care packages, health statistics audits for community care, a greater degree of flexibility in respect of carer's allowance and clarity on entitlements for older people.

The Seanad Public Consultation Committee report also sought that the whole area of wardship be revised. I emphasise this concept is out of date and is no longer fit for purpose as it fails to respect the humanity of those who find themselves subject to wardship. The scheme which was set up under the Lunacy Regulation (Ireland) Act 1871 effectively means that decisions are made for people without their consultation. I was contacted by Diarmuid Hanifin of Amnesty International, who is in the Visitors' Gallery, as I am sure all Senators were as part of our preparation for the debate on the issue. It is appropriate to raise the issue in the context of the motion. I concur with Amnesty International in its analysis that only when all attempts at supports are exhausted should decisions be taken on somebody's behalf.

In 2007 Ireland signed up to the UN Convention on the Rights of Persons with Disabilities. To ratify the convention, our capacity legislation needs to be brought into compliance with international human rights law. Article 12 of the UN convention requires that persons with disabilities enjoy legal capacity on an equal basis with everybody else and if people need support to make decisions they should get it. In order to comply with international human rights law, any new capacity law which the Minister for Health or, perhaps, the Minister for Justice and Equality may bring forward must reflect this ethos and also set out a statutory framework for supports. The ramifications of the UN Convention on the Rights of Persons with Disabilities are clear. Ireland needs to move away from guardianship and assessment of mental capacity to assessment of how people can be supported to make decisions. That must be the basis of any principle which should underpin any reform of the capacity legislation. Amnesty International has also advanced a number of points that should be taken into consideration when bringing forward any such capacity legislation. It is clear that the capacity legislation and the Mental Health Act 2001 should complement each other. The 2001 Act was supposed to provide for a rights-based approach. However, this has been suppressed, to some extent, by its interpretation and emphasis on paternalism.

There are a number of other points I wish to make but it is not possible to do that in six minutes. Sometimes motions which are well intentioned - this is a good motion - can wring hollow when set against other decisions made, such as reducing 1 million home help hours which people need. I am sure there is no public representative who has not been contacted by individuals who have been affected by the cuts in home help. We could argue rightly that cuts in this area are socially wrong because of their impact. This is an era when we need to make savings and to interpret the outcomes of decisions made. It is clear from my analysis, at least, and an analysis of all the groups who represent older people and people with disabilities that cuts to these areas while they might reduce spend in one area, increase spend in other areas.

Senator van Turnhout made the point that community care and caring for people in the home is meant to be the cornerstone of Government policy. If supports in the home are taken away there is a danger that will lead to people going into nursing homes and private nursing homes resulting in subvention and all the ancillary costs. While that is a possibility, it must be borne in mind when we make adjustments, cuts and savings. If we are saving on one part of spending, are we increasing spending in another area as a consequence of the action being taken? I reiterate my full support for the motion. It is one of the best motions I have seen from the Government in terms of substance and I am pleased to give it my enthusiastic support.

Mary Moran (Labour)
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Well said.

Alex White (Dublin South, Labour)
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I thank Senators for the opportunity to address the motion on mental capacity legislation and dementia. It is encouraging and gratifying to note the level of agreement across the House in respect of the issues dealt with in the motion. It was tabled initially by my colleagues in the Labour Party, supported by Fine Gael colleagues in government, the Taoiseach's nominees, Fianna Fáil, Sinn Féin and Independent Senators, all of whom have stated their strong support not just for the sentiments but the commitments and necessary actions that are required to be taken in the context of this challenging area. The level of cross-party support is encouraging as is the level of engagement with the debate, and the insights various Members have brought to it, in some instances from a personal experience, are always important. For example, Senator Barrett, who was never without an insight in respect of any of these matters, pointed to the importance of research and evidence that our policy making should be based on evidence.

It is extremely important that such research should be done in so far as it is possible. I believe Senator Barrett also made the point about prevention and the broader holistic view of the health-care system. We should not simply regard our strategy as one of reaction to an emerging problem an individual has, but it should be, as it were, a whole-of-life strategy. Certainly an element of our health-care strategy should not be based simply on reacting to people who become ill, but to have ways and strategies for anticipating that and the system responding to it in so far as it is possible for us.

On coming into office the Government made a firm commitment in the programme for national recovery to introduce a mental capacity Bill that is in line with the UN Convention on the Rights of Persons with Disabilities. The mental capacity Bill will reform the law in respect of adults who are vulnerable in the sense that they may lack some or all capacity to make important decisions for themselves. It will modernise the law on capacity, some of which dates back 200 years, and will bring Irish capacity legislation into line with current thinking and modern legislative frameworks worldwide. The purpose of the Bill is to put in place a comprehensive legal framework to support adults who do not have full decision-making capability. This covers a wide spectrum, ranging from people with dementia to persons with intellectual disabilities or acquired brain injuries.

In summary, the Bill will: reform legislation protecting adults who, owing to intellectual disability, illness or accident, are unable to make decisions for themselves or exercise their legal capacity; provide a new understanding of mental capacity based upon a time-specific and issue-specific, functional approach; replace the wards of court system which is the existing mechanism for managing the affairs of persons who lack decision making capacity; progress the process towards ratification of the UN Convention on the Rights of Persons with Disabilities, which was signed by Ireland on 30 March 2007; and give effect to the Hague Convention on the International Protection of Adults. The statutory guiding principles underpinning every support or intervention made in regard to persons lacking capacity will reflect the UN convention principles of respecting the dignity and the autonomy of each individual person, including the freedom to make his or her own choices.

In the drafting of the Bill careful attention has been given to putting in place safeguards to protect vulnerable adults from exploitation. In particular, the Bill will contain detailed provisions for the supervision of personal guardians of adults lacking capacity and also of donees of enduring powers of attorney. The Government legislation programme indicates that the Bill is expected to be published in this session.

Our health services are caring for an ageing population with varying needs and conditions including dementia, which is a progressive condition that not only has a huge impact on the physical, psychological and emotional state of the person with dementia, but also on their families and carers. We all want to see people given more opportunities to live full and meaningful lives on their own terms. It is vital that people with dementia are not defined by the disease. We must remember that with the correct supports in place, people can live full and active lives even after a diagnosis.

There is no doubt that society is enriched by the positive participation of all its members and our objective is to have a society where those at risk of social exclusion are fully integrated into their local communities, and are supported to participate to their full potential within those communities. Government policy aims to support people with dementia to live in dignity and independence in their own homes and communities for as long as possible. I am confident that there is common agreement across the House with this philosophy.

The programme for Government makes a clear commitment to develop a national strategy for dementia by 2013. It is worth quoting this commitment, because I take the point made by Senator Cullinane and others that while a motion is very important and can focus our thinking, commitment and engagement, what is really important at the end of the day is what flows from the commitments given and the action taken. The programme for Government states:

We will develop a national Alzheimer's and other dementias strategy by 2013 to increase awareness, ensure early diagnosis and intervention, and development of enhanced community based services. This strategy will be implemented over five years.

At present, it is estimated that more than 41,000 people living in Ireland have dementia. The pressing need for a strategy on dementia is best understood in the context of projected increases in the number of people with this disease reaching between 141,000 and 147,000 by 2041. We obviously need to plan for this significant increase and the resulting demands on our health services in the future.

The review has estimated the overall cost associated with dementia in Ireland to be almost ¤1.7 billion per annum, with 48% of this figure representing informal care provided by family and friends and a further 43% representing residential long-stay care costs for those living with dementia in the community. This research highlights the primary importance of the role that families and communities play in affecting the environment of care for people with dementia.

Among the key elements arising from the research which need to be considered in light of the strategy are: enhancing public awareness about dementia; increasing the numbers of early diagnoses; and introducing measures to improve quality of life and quality of care for those with dementia. These and other key elements will influence the development of the strategy. It is important to acknowledge the hard work and commitment invested by the advisory committee that guided and oversaw this research. It provides a solid foundation and clear framework within which to achieve our objectives.

The next stage of the process involved a public consultation process and the closing date for submissions was 31 August. The Department sought the views of interested parties, whether individuals or organisations, to help inform the development of the strategy, with a particular request to hear the views of those directly affected by Alzheimer's and other forms of dementia, including people who have been diagnosed with one of these conditions, and their families and carers.

I am pleased to say that we received more than 70 responses to the call for submissions. Submissions were received from individuals, representative organisations, family carers and health-care professionals. I take this opportunity to express my gratitude to those who participated. These contributions will serve as a platform for discussion and will further inform the development of the overall strategy. The next step will see the establishment of a working group to develop the strategy fully in 2013.

The central focus of service provision must always be that it is person-centred, a point made by Senator O'Keeffe at the outset of the debate. We need to recognise, respect and support the individual, and ensure that we keep them and their families at the very centre of all decisions and decision making.

The Health Service Executive provides a range of services for people with dementia including primary care services, in which I have a particular interest, involvement and lead role; home support services; day care; respite and continuing care services. These services are delivered through the HSE's network of local offices, via public health nursing, day-care centres and public and private residential care facilities and, where appropriate, psychiatry of old age teams. The HSE also funds non-governmental agencies, for example, the Alzheimer Society of Ireland, Caring for Carers Ireland, and Western Alzheimers.

A limited number of memory clinics and specialist services are available. Respite care is the most commonly requested service and is provided in a number of ways, including the provision of a home care package to support respite in a person's home or day respite within dementia specific or generic day care centres. Respite is also provided in residential homes. In addition, care or support groups have been established throughout the country, details of which can be obtained from individual local primary care teams.

I would like to acknowledge in particular the magnificent and impressive role played over so many years by the Alzheimer Society of Ireland, which this year is celebrating 30 years of representing the needs and interests of dementia patients and their carers.

Mary Moran (Labour)
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Hear, hear.

Alex White (Dublin South, Labour)
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The society has grown over the years to become a professional nationwide charity, with a network of regional branches, staff and volunteers providing a range of services, including home care, day care, support homes, respite care and social clubs.

We have had the opportunity in recent months of launching a number of initiatives. The HSE has entered into a service level agreement with the Genio Trust to develop and test new service models with a view to improving the range of community-based supports for people with dementia, to influence public policy and investment in the area and to build leadership in the field. The total cost of these projects is in the region of ¤4.3 million. Atlantic Philanthropies has generously provided ¤2.3 million, with the remainder provided by the Health Service Executive.

Four dementia projects were selected earlier this year. The successful demonstration sites are located in Mayo, Kinsale, south Tipperary and Dún Laoghaire. The outcomes from each project will be evaluated and learning disseminated beyond the demonstration sites to the wider system, and to inform future operational policies of the HSE. These are terrific examples of good ideas and good practice, which seek to move away from a situation where, too often, the service user had to fit into the service being provided to others in the local area to one where the service user is the key stakeholder in service design at the outset.

As we know, currently, there is no cure for dementia and people can live a long life with the illness. In this regard, we acknowledge that their needs and those of their families and carers increase as the disease progresses. Carers are vital to the success of Government policy in relation to older people, children and adults with an illness or a disability. I am fully aware that every day in this country tens of thousands of family members, friends, partners, parents, children or neighbours provide care for someone who, through a variety of circumstances, is in need of that care. The Government is under no illusion in relation to the challenges that carers face every day. This is why the Taoiseach committed to developing the national carers' strategy, which was launched in July of this year. The strategy sets the strategic direction for future policies, services and supports provided by Departments and agencies for carers.

The national carers strategy is the first of its kind to be developed in recognition of the invaluable role and contribution of carers in Ireland. It places carers firmly on the national agenda and sets the strategic direction for future policies, services and supports provided by Departments and agencies for Irish carers. It sets out a vision to work towards and an ambitious set of national goals and objectives to guide policy development and service delivery to ensure carers feel valued and supported to manage their caring responsibilities with confidence and are empowered to have a life of their own outside of caring. I take this opportunity to recognise and acknowledge the level of dedication and commitment which carers show to their loved ones every day.

Alex White (Dublin South, Labour)
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In this, the European Year for Active Ageing, I am keenly aware of the importance of positive ageing not alone for each of us as individuals but also for our communities and society as whole. The Government acknowledges the need to better recognise the position of older people in society. The programme for Government has committed to completing and implementing the national positive ageing strategy in order that older people are recognised, supported and enabled to live independent full lives. The strategy will set the strategic direction for future policies, programmes and services for older people in Ireland and sets out a common framework for the development of operational plans by a number of Departments, clearly setting out each Department's objectives relating to older people. Mechanisms designed to monitor the implementation of measures contained in operational plans will also be included in the strategy. It is not envisaged, however, that the strategy will propose new service developments. Rather, it will set the strategic direction for future policies, programmes and services for older people in Ireland.

A considerable amount of preparatory work has been completed. My colleague, the Minister of State, Deputy Lynch, who is the lead Minister in this area, intends to bring a draft strategy to Government in the final quarter of 2012. I reiterate that the development of a national dementia strategy is a priority for this Government. The research that was carried out earlier this year highlighted the primary importance of the role that families and communities play in the environment of care for people with dementia. The financial cost, to which I alluded, is only one aspect of the overall costs. Non-economic costs include the social, emotional and psychological strain the illness confers on people with dementia and their carers. While I cannot at this stage pre-empt the findings of the working group that will develop the dementia strategy, having commissioned the research review and engaged in a public consultation, I can assure Senators that we are listening to what everyone has to say, including Members of this and the Lower House and outside interests across the board. We are committed to examining all options and views put forward in this context. I am confident this House will help inform our deliberations. Senators can rest assured their recommendations, and insights provided by colleagues in the course of this debate, will be considered and will influence the strategy development.

In the current economic climate, it is very important that available resources are targeted at those most in need and that, where possible, care is provided in the community and the home. The continuing pressure on resources in the health sector generally will make it an imperative that we obtain the very best targeting of resources towards those most in need. The development of a national dementia strategy, combined with these other two important strategies to which I referred, will be a significant step forward in this regard. Together with the enactment of the mental capacity legislation, they will form a solid foundation in ensuring the rights of some of our most vulnerable citizens are protected. They, their families and carers are, and will continue to be, the focus of our considerations.

Paschal Mooney (Fianna Fail)
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I welcome the Minister of State to the House. I also welcome his positive approach to this important aspect of Government policy. The Minister of State has set the bar very high. I wish him luck in achievement of the aspirations set out in the national dementia strategy and look forward to the successful conclusion of the deliberations that are under way in this regard and to our having an opportunity to discuss the proposals brought forward by the Minister of State, Deputy Lynch. I also welcome that a draft of the strategy will be brought to Government during the final quarter of 2012. I say this in the context of a rather interesting opinion that dementia services cost more than cancer, heart disease and stroke services combined. Despite this, as an illness it fails to attract commensurate political and budgetary attention. In that context, the aspirations as outlined by the Minister of State are to be welcomed.

As has been stated in the debate and will be stated again in future debates, there are few families that have not been touched by dementia and Alzheimer's disease. My late aunt suffered from dementia in her declining years. A close neighbour of mine was diagnosed with dementia at the early age of 57 years. He was a mathematics teacher and brilliant man who was active in his community. He died within years of his diagnosis. The point has been made that people with dementia, as opposed to people with Alzheimer's - I understand there is a medical distinction between the two - can go on to live long lives, which places a great deal of responsibility and burden on families, friends and neighbours. Sadly, there are also those like my neighbour who died not as a result of his condition but because of associated physical complications arising from his incapacity.

The other aspect of this debate, which I know the Minister of State would be in favour of, is that in whatever strategy is developed, where possible those suffering from dementia and Alzheimer's disease stay in the home or in an environment to which family and friends have access. I know this would be a priority of the Government - and I do not mean this to sound cynical - because it would be cheaper and less of a burden on the Government if those suffering from Alzheimer's disease and dementia are looked after by their family and friends rather than being institutionalised. This also has medical benefits. I hope the strategy will reflect this.

I am glad the Minister of State referred to the major costs outside of the economic and financial costs associated with dementia, as they often remain unrecognised. I am particularly pleased he paid tribute to family and carers as well as to the Alzheimer Society of Ireland. It is rather interesting that the scale of dementia is such that governments throughout the world are being forced to review their policies and reconfigure services for older people, as the Government here is doing. It is a sad reality of life that the figures are increasing. I do not know whether this has to do with environmental reasons. I assume the Government provides funding in other areas of medical and scientific research, and I wonder whether it feels it has any role in advancing the research actively under way by pharmaceutical companies. I presume they are closely monitoring results in this regard; it would be helpful in the context of the work that will be done on the strategy by the Minister of State, Deputy Lynch, which might focus on the medical advances under way. While they have not cracked it, and it seems to be a long way off, anybody who has more than a passing interest in this field will know there are regular updates on increasing discoveries about what causes Alzheimer's disease and dementia.

I wish to pay tribute to two people. The first is my friend and colleague, Senator Mary White, who prepared a policy paper for our party on active ageing and quality caring. She has been more than active in this regard, to the point that those of us in the party have had on occasion to restrain her in her enthusiasm for the subject. I admire her, and I am sure the House would agree, for focusing on an area that does not always get the attention it deserves. I do not mean to be at all political in this regard but I also pay tribute to the former Minister of State, Áine Brady, who from 2010 to the end of the Fianna Fáil-led Administration initiated a number of policies which have been continued and expanded by the Government. This reflects the all-party, non-political, non-partisan nature of this terrible medical condition. I congratulate the Labour Party for bringing this important motion to the House. We enthusiastically embrace all of its aspects.

Jimmy Harte (Labour)
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I welcome the Minister of State. I am also delighted to welcome the members of the public who are in the Gallery. They have an interest in this subject and I thank them for giving up their time. I am glad the Minister of State has grasped the concept so well and I know he will be on top of his brief. It is very important the national dementia strategy is put in place as soon as possible because it affects all families at some level. According to the statistics, people in their 60s have a one in 100 chance of suffering from it, which increases to a 20 in 100 chance when one is in one's late 80s. With our population ageing and living longer most people in this room will be affected either directly or through someone very close to them. It is a real issue in the country.

Perhaps in the past the condition was not regarded as a major disablement because people stayed at home with their families, but it is a debilitating condition. It is extremely difficult for families to watch a younger person develop early onset of dementia. The Government and society has a role in dealing with this issue and in assisting the carers, as the difficulty of coping is sometimes left out of the loop.

The Department of Justice and Equality can make people wards of court and it can be awarded powers of attorney, which can be a difficulty for families and we must address this. People physically capable of going on holiday but who need the assistance of a carer should be assisted by the Department of Foreign Affairs and Trade if they want to go on holidays in the early stages of the disease. At local government level, we must make towns, villages and services more friendly for people suffering from Alzheimer's disease and the onset of dementia. According to statistics, by 2040 some 80 million people worldwide will suffer from Alzheimer's disease and dementia, as it doubles every ten years. By that time, dementia it will be a major issue for families, and local and central government have a massive job to help communities become more friendly for people.

Many people are physically active into their 80s, but carers need support from the Department of Transport, Tourism and Sport and State agencies involved in sport. Evidence suggests Alzheimer's disease may not be as rampant in people who are more physically active, so from a cardiovascular point of view it is important the body is working. People far more qualified than me state cardiovascular and stroke issues can lead to the early onset of dementia. Therefore, our entire outlook on health is important for the national strategy on dementia. The future for people in this position must be positive.

The HSE has a role to play in the community and voluntary sector to assist people who want to get involved. Community employment schemes must be protected along with home help. This is not a temporary issue we can solve; we must put in place a long-term plan. We have seen support today from all parties. This is something everyone supports and wants to work because this is our future as well as that of our parents and children.

In other countries the extended family has a role and people look after their grandparents. This was easier to do years ago when people worked around the home and on farms. People now travel and cannot afford to leave their parents in this position. The Departments and agencies I mentioned have a role and must have an input into the strategy. I look forward to the launch and delivery of the strategy on dementia. Most people doing voluntary work are not appreciated and I thank them for their support. I thank the Minister of State for coming to the House and giving his time and considerate response.

Colm Burke (Fine Gael)
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The Minister of State is welcome to the House. While listening to this debate it occurred to me that approximately one third of all debates in the House are directly related to health care. This emphasises the importance of the issue and I thank the Labour Party for bringing forward this extremely important motion. It is an area on which we need to focus and bring about the necessary changes to assist families who must deal with a member of their family who has Alzheimer's disease or dementia.

It is extremely important for us to give every possible support.

The Minister of State's speech was very comprehensive in setting out a clear agenda for what he intends to do in this area over the next two to three years. Senator Cullinane and the Minister of State referred to wards of court. One area we have not worked on over the past number of years is enduring powers of attorney even though we did bring about the change in the law. We have not sold it as an area for people to sign up to. That means people can assign enduring power of attorney while they are fully competent and set out clear guidelines as to how they want their affairs managed should they wind up unable to manage their affairs. We need to do much more in that area to get across the message that this procedure is available. As someone practising in the legal world, I find that people come to me when the person is a borderline case and it is unclear whether he or she has dementia or not. We then try to get reports from doctors to ascertain if it is safe to get documents signed. In nearly 50% of cases, it is too late to get that enduring power of attorney assigned. We need to let the public know that this procedure is available.

I also welcome the many people in the Visitors' Gallery and thank them for their work and for putting the pressure on us to deliver in this area. Pressure needs to be applied to us to ensure we can provide a better back-up support mechanism for people.

Dementia is not necessarily confined to people over a certain age. Over 4,500 people under 65 have dementia. I remember canvassing in one election, knocking on a door and being asked in so I could discuss a particular problem with a member of the family. The husband of this person was only in his mid-30s but was in full-time care as a result of developing Alzheimer's disease or dementia at a very early age. The woman had four children under the age of 12. It was absolutely frightening to think that there were no answers to the problems she faced for a long time. It is not confined to an older age group and we also need proper systems of support for affected people in younger age categories. We need to be conscious of this to ensure we do not ignore them in developing any policy changes.

This morning, I attended the launch of a report by the Economist Intelligence Unit about health care. We are reacting to problems as they arise rather than looking at them before they arise and carrying out long-term planning. We need to be proactive about screening and making sure people go for medical checks, not because they suddenly have pain or a problem but because they should have regular medical checks. We need to promote this more. People have a policy of only going to a doctor when they have a problem whereas we should be encouraging six-month or 12-month checks where problems can be dealt with far earlier.

Screening has been introduced in Abu Dhabi across the country and 95% of the population have been screened. Reports have been given to every individual setting out the lifestyle changes he or she needs to make. We need to be more proactive in respect of our health care policy in this area and in getting people to look at their lifestyles, making sure they get proper advice and helping them change those lifestyles so that the cost of medical care will automatically be reduced.

This is a very important topic and I fully support the motion tabled by the Labour Party group. It is very comprehensive in an area where we need to bring about changes. I know those changes will occur with the Minister of State's help and we will all be behind him in bringing about the required change.

Pat O'Neill (Fine Gael)
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I welcome the Minister of State with responsibility for small business, Deputy John Perry, for the rest of the debate.

Marie Moloney (Labour)
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I welcome the Minister of State to the House where he is always a welcome face. I welcome the commitment of the Minister of State with responsibility for primary care, Deputy White, to ensuring the publication of the national dementia strategy in 2013. We would all like to envisage an Ireland where everyone could live the life of their choosing and have a good quality of life despite their disability or despite being diagnosed with a terrible illness. With this illness, somebody has a perfect body but his or her mind goes. It is very sad and hurtful for the person and his or her family. I worked in a nursing home years ago and distinctly recall a family member coming home from the US to visit his mother who did not recognise him. The mother was in a happy place but he was not. It was heartbreaking and wrenching to see a grown man cry because his own mother did not recognise him.

Obviously, early diagnosis and intervention must be looked at and developed to the highest degree. All experts say that the earlier the diagnosis, the better the quality of life for the sufferer and the family looking after him or her. Following on from early diagnosis of dementia, as stated in Department of Health policy, the move is to get people back into the community and living in their homes. For that to happen, we need to put the services in place. Part of the issue is the lack of legislation to underpin access to these services. We need to put legislation in place to give people what they are entitled to, otherwise services are discretionary, as they are at the moment. I know the single assessment tool will be introduced but we need to look at the services that are in place.

It is very hard for people to access services on the ground, regardless of what people will say and put down on paper. It is hard to know when people are to leave hospital or whether there will be home help available. It is a long and hard road for the family members looking after a person with dementia. It is hard enough to have to live with it and see one's loved one in this condition without having to fight the system. Unfortunately, I find that people are constantly fighting the system and looking for their entitlements and rights. As part of the strategy, we must ensure people's access and entitlement to these services is included in legislation.

The Minister of State, Deputy White, sang the praises of carers and rightly so. I continually fought for carers even before I was elected a Member of the Oireachtas because they are one of the most valuable assets this country has. They are saving the State a fortune and we must look after and value them. Once a carer is taken away from a person, he or she will inevitably end up in a nursing home or in care, which is very sad, so we must protect our carers. The national carers' strategy has gone a long way towards underpinning their rights. I will leave it at that because everything has been said by other Senators who have all highlighted what they want in the strategy. I am sure the Minister of State will take on board their views and revert to the Ministers on this subject in his own time. I thank him for taking the time to listen.

Mark Daly (Fianna Fail)
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I support this wide-ranging motion. In the current economic climate, providing support for sufferers of dementia and their families is very challenging. Unfortunately, action on the Government's commitment to introduce legislation on the UN Convention on the Rights of Persons with Disabilities is long overdue. In response to questions on when the convention would be ratified, all Ministers who have held portfolios on this topic have said they want legislation in place beforehand. While we have signed up for ratification, we have not addressed all the elements required. While our aspiration to ratify the treaty is noble, we do not recognise the urgency of doing so. I acknowledge this was also the case under the previous Government. Although strides were made under former Minister of State, Mr. John Moloney, to implement a new strategy on disability and mental illness, they were not enough. I ask the Minister of State, Deputy Perry, to ensure legislation is put in place in this regard. While many of its provisions will require financial assistance, it must be acknowledged that rights do not always have financial consequences for the Exchequer. There are many rights enshrined in the UN convention that are not upheld at present.

Under the Good Friday Agreement, Irish sign language is supposed to be recognised both north and south of the Border. In the North, one can gain access to one's government through Irish sign language but this is not possible in the South. This is amazing considering the content of the Good Friday Agreement and the UN convention. One despairs over the fact that on one side of the Border, one will have access to government services and rights whereas, on the other, in the South, one will not. I ask the Minister of State to examine this. While we seem to be very good at signing up to the ratification of UN conventions, our implementation is less than desirable. While I note the commitment on carers and others, I believe that if we are serious about ratifying UN conventions, we must ascribe to the process a greater degree of urgency than we have heretofore.

Caít Keane (Fine Gael)
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This is one of the most important issues on the agenda. I have a copy of the report launched on 18 January 2012 in Trinity College Dublin by the Minister for Health, Deputy Reilly, Creating Excellence in Dementia Care. I pay tribute to the authors, Professor Eamon O?Shea, NUIG, Professor Suzanne Cahill and Dr. Maria Pierce, and I commend the work of the Alzheimer Society of Ireland.

So much work has been done in producing the report that we do not have to reinvent the wheel. It is an outstanding report. The Minister, in launching it, stated there is a commitment in the programme for Government to launch a national strategy. I look forward to its implementation. The deadline given for this is 2013. We are approaching 2013 so I hope all the work will be done by then. The report is invaluable in informing this work. One does not have to reinvent the wheel because the report is evidence based and was produced by eminent people. Three quarters of the work is already done. I thank the philanthropists who provided much of the funding for the work on which the report is based. I acknowledge the work of the Alzheimer Society of Ireland in its preparation.

Everybody has spoken about the importance of early diagnosis. In 2010, the then Minister launched a national dementia education programme. It seemed to identify gaps in specific education and training for nursing and non-nursing staff dealing with dementia. The Minister of State, Deputy Perry, might bring that to the attention of the Minister of State, Deputy Lynch, to determine whether there has been any re-evaluation of the programme. What was found? What is working and what is not working?

Senator Colm Burke tabled a motion on the training of nurses, including gerontological training. This is mentioned in the programme. The Seanad engaged in community consultation with all the relevant groups associated with the elderly. These issues, particularly training, were raised heretofore.

We heard so much about community care in the past few weeks. Much of the news was bad but the good news is that community care for those suffering from dementia is vital. Many people enter long-term care before they are ready for it. The education, training and community-awareness programmes are not tailored to address this issue. Two thirds of those in long-term care are estimated to have dementia. Some are believed to be put in care prematurely.

One of the weaknesses of the home care services is that they are not underpinned by legislation, nor are they provided for statutorily. Senator Moloney said that, while aspirations are fine, it is vital that there be a statutory basis to implementation. In the absence of community support at the desired level, people with dementia continue to be placed in long-term care prematurely.

I would like the Minister of State, Deputy Lynch, to consider funding. I was working with a lady recently whose husband, who is quite young, has dementia. She found two nursing homes that were willing to take him. It is sometimes difficult to get the right nursing home to take a person because specific care is required. However, the funding system is such that some institutions are deemed unsuitable while others are deemed suitable. It is important that the funding system be changed to accommodate those who are willing, able, trained and HIQA approved.

Let us consider the emphasis on prevention. In this regard, I was looking at the BBC only yesterday. I happened to be in Glasgow, where I was speaking at the British-Irish Parliamentary Assembly on the UN declaration on disabilities. Senator Mark Daly will be delighted to know that I have been advocating action on Irish sign language for years. I spoke about Irish sign language at the meeting. A motion was passed yesterday and it will be forwarded to the relevant authorities in Scotland, Wales and Ireland. I assure the Senator that we are working on the matter.

With regard to music programmes, it has been found that music helps those with dementia. While the benefits of doing crosswords, Sudoku, etc., have always been known, new research has shown that grey matter increases significantly among those who do physical exercise. I encourage everyone to get up on his or her exercise machine.

They say prevention is as good as a cure but perhaps not in this case. I do not have the details of the new research but we should all promote it. I congratulate the Alzheimer Society on its 30 years of hard work and I hope that we can do what it requests of us.

Acting Chairman (Senator Pat O'Neil):

I call Senator Mary Moran. She has six minutes.

Mary Moran (Labour)
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I welcome the Minister of State, Deputy Perry, back to the House. I also commend the Minister of State at the Department of Health, Deputy Alex White, on his excellent speech. He pointed us in the right direction by outlining what is being done and what was outlined in the programme for Government. I welcome the cross-party support by Senators. This is a great day for the Seanad and we are all singing from the same hymn sheet.

Much of what I had planned to say has already been covered by my fellow Senators. Everyone has mentioned the importance of early diagnosis and training for doctors and diagnosticians.

I also welcome the mental capacity Bill and add my voice of support. It is imperative that the Bill is brought forward and published as soon as possible. As has been said today, it would be brilliant to have it published during the first six months of next year during Ireland's Presidency of the European Union.

In reference to planning for the future, I would like to highlight the work that has been done by all of the excellent societies and associations. The Alzheimer Society has been congratulated on its 30th anniversary but there are many other groups that provide care and services. I note that Mr. Diarmuid Hanifin from Amnesty International was here earlier. I also note the work done by Older & Bolder, the Positive Age groups and through the national positive ageing strategy. Recently I launched positive ageing week in Dundalk and I was amazed to see the services that are available and provided by volunteers.

I wish to mention the work done by the Irish Hospice Foundation through its Think Ahead project. It urges people to think about and pre-record their wishes in the event of serious illness or death. The Think Ahead form was launched on 12 October at the forum on the end of life and I was involved in the project. A pilot programme is being rolled out in County Louth. It is one of the counties being used for the pilot scheme. The Think Ahead project presents us with a wonderful opportunity. I urge everybody, from fellow colleagues to associations, to watch out for the scheme being rolled out in their area as it gives everyone an opportunity to plan for later in life. For people in the early stages of dementia the form is a wonderful tool and will ensure that their wishes are carried out even when they are no longer able to speak for themselves. The scheme is invaluable when a person's capacity to make important choices fluctuates. I have mentioned how important it is to introduce and publish the mental capacity Bill as soon as possible.

An issue was brought to my attention this week by someone who works in dementia care and the issue was not raised earlier. I refer to the safeguarding of people with dementia who are at risk of abuse, particularly in their homes. We all hope that the children's referendum will be passed on 10 November. It will ensure that children at risk can be removed to a place of safety in order to protect them in exceptional circumstances. So much work must also be done to protect a person with dementia who is at risk. At present the only places of safety that are available to them are the accident and emergency department of a hospital or a Garda barracks. Neither is suitable for a severely confused person. I want to bring the matter to the Minister of State's attention and I ask for it to be considered when the strategy is being rolled out. I know that some work has been done and is ongoing regarding the matter. It is vital that we examine it further.

As has been said many times today, carers are the lynchpin and we could not provide a service without them. I wish to express my sincere thanks to them for all of their work. There are thousands of carers and they provide care to dementia sufferers, people with disabilities and older people. Yesterday I spoke to a girl who rang me because she was distraught and worried about her 92-year old grandparents. She was simply looking for a night's sleep and wanted care to be provided. The care service is important. Again, I thank the carers for all of the work they do.

Acting Chairman (Senator Pat O'Neil):

I call Senator Susan O'Keeffe and she has four minutes to conclude the motion.

Susan O'Keeffe (Labour)
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I thank the Minister of State, Deputy Perry, for replacing the Minister of State, Deputy Alex White.

I thank my colleagues in the Labour Party for all of the work that has been done to table the motion today and I thank Senator Landy for seconding it. I also thank all of my colleagues in the Seanad. As a Senator has rightly expressed, it is political but not party political. The way Senators have robustly supported the motion reminds us all of its importance. It sends a clear message to those who will be charged with pulling together the important strategy. It proves that we all care about dementia and that there are many ways to form the strategy. I hope that some of what we have offered today will become part of the strategy.

I welcome Deputy Alex White's commitment to publish the mental capacity legislation during this session. I welcome his reiteration that the national dementia strategy will be delivered and implemented over the next five years. It is important to note, while we are here being positive together, that the Government is driving the strategy forward. The commitment given in the programme for Government stands as a real commitment to the people inside and outside of the chamber and also to the thousands of people who struggle with dementia and care for their loved ones. Those people want to see that resources and budgets are spent wisely and in a more targeted way in the future.

Tomorrow the Alzheimer Society will host a conference where Gráinne McGettrick will speak about transforming the lives of people with dementia. The national dementia strategy wants to transform the lives of those who have dementia and their carers. I shall remind Members of what was cited earlier. We said that: carers are crucial to the strategy and its implementation; that its approach is person-centred when providing care and services; that it is based, as far as possible, in the community; that there would be more and specified training; that standards of care are outlined in the strategy; that the budget, if it can be, is ring-fenced and targeted with a better direction of all resources; and that a clinical director in the HSE be appointed to take care of the latter.

The Minister asked me about research. One of the advantages of having a relatively homogenous population in Ireland means that an EU joint programme initiative is commencing through the Health Research Board. Ireland will participate in the research on Alzheimer's disease and the strategic research agenda is being prepared. The measure will add to the entire work. Many people work in the dementia sector and many of whom will be present at the Alzheimer Society's conference tomorrow. I commend the work done by the Alzheimer Society and the many organisations that care about dementia and for the people who care about dementia. I thank the Members for a robust and strong debate and I am glad that we have managed to reach agreement on the motion.