Dáil debates

Thursday, 14 May 2015

Implementation of National Dementia Strategy: Statements (Resumed)


1:10 pm

Photo of Peter FitzpatrickPeter Fitzpatrick (Louth, Fine Gael)
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I welcome the opportunity to speak about the implementation of the national dementia strategy which was launched in December of last year and is delivering on a commitment in the programme for Government to develop and implement a national strategy for Alzheimer's disease and other conditions. The strategy has been designed to increase awareness, thereby ensuring early diagnosis and intervention. It has also been designed to ensure enhanced and improved community-based services will be developed. It is a stated aim of the strategy that people suffering from dementia will continue to live in their own communities and live active, healthy lives.

The strategy lays down a number of key principles, including the need to take account of dementia in the implementation of existing and future health policies. People suffering from dementia will be encouraged to participate in society and their own communities as fully as possible for as long as possible. End of life care for those suffering from dementia will be prioritised and provided in the most appropriate settings. All those caring and providing services for people suffering from dementia should be fully trained and supervised. Resources should be directed to provide the best possible outcome for those suffering from dementia, their families and carers.

I am delighted to note that the HSE and the Department of Health have agreed a joint initiative with Atlantic Philanthropies in order that significant elements of the strategy can be implemented during the period 2014 to 2017. I commend all parties involved in this initiative which will see €27.5 million invested in the national dementia strategy implementation programme. I would like to see more such initiatives in the future. I note that a national office has been established and will be dedicated to overseeing implementation of the strategy. A general manager and a senior project manager have been appointed. I also note that a draft implementation plan has been developed and was recently presented for discussion at the first meeting of the monitoring group and that a final plan will be presented in June. It is welcome that governance arrangements have been established, a monitoring group is in place and that its membership and terms of reference have been agreed. I urge all parties involved in this process to keep up the good work and ensure the plan is implemented as soon as possible.

Alzheimer's disease and dementia affect families all over Ireland. I know only too well the difficulties faced by the families and friends of those suffering from dementia. It can be very difficult to watch a loved one suffer the effects of dementia. I take the opportunity to mention some of the wonderful services being provided in my constituency. The Birches Alzheimer Day Centre, Priorland Road, Dundalk was opened in June 2000 and is a great example of how a community can come together to provide worthwhile services for people suffering from Alzheimer's disease and dementia. I must also mention the Birches Alzheimer Day Centre, Rath Abbey, Carlingford and the Drogheda day care centre at St. Laurence's Gate. There are some brilliant support groups in operation, including the Drogheda support group and the Dundalk support group. The Netwell Memory Clinic is available on the third Thursday of every month and part of the Alzheimer's café initiative. It is an excellent service which provides a warm and welcoming space for dementia sufferers, their families and friends, as well as social and health care professionals to meet on a monthly basis to exchange ideas.

I praise the work done to date in the implementation of the national dementia strategy by all those involved. I encourage them to continue their good work to ensure the plan will be fully implemented as soon as possible.

Photo of Bernard DurkanBernard Durkan (Kildare North, Fine Gael)
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I am grateful for the opportunity to contribute to the debate. I compliment the Minister of State, Deputy Kathleen Lynch, for her work in the provision of mental health support and identifying strategic expenditure in an area that was neglected for a very long time. She should also be complimented on her personal commitment to dealing with the issue and her very detailed knowledge of the subject. As is the case in any area, knowledge of a subject is of enormous help in identifying ways to deal with a problem, from which commitment follows on. Long may the Minister of State continue her work in this area.

All Deputies have dealt with families who have been affected by dementia. One issue that has come to my attention recently concerns the age range of persons affected by dementia. In some cases, very young people have been afflicted by it, by which their families are taken aback and shocked. In that context, I must refer to the importance of identifying best practice in so far as possible, not necessarily with a view to prevention but to at least addressing the issues that seem to cause dementia. The Minister of State identified some of them and they are important in the context of what must be done.

It was brought to my attention some time ago that Omega 3 had been hailed as an important element in a person's diet, but it was then discovered to be carcinogenic. As Deputies, we cannot advise on such an issue because we do not have the information required to give a considered opinion. In that context, I ask that all relevant information that would be of help to those who wish to follow a dietary regime that is complementary to good mental and physical health be put into the public domain. This is particularly important for those families with a history of dementia or Alzheimer's disease.

Mention was made of the importance of exercise. It is important that people realise adequate exercise does mean running ten miles every morning. We all need a reasonable amount of exercise which has been proved, beyond doubt, to be an essential part of a healthy lifestyle, with a healthy diet. A good diet and sufficient exercise will ensure the brain and the body will remain active and work well together. In the context of the promotion of the proposals contained in the national dementia strategy, I ask the Minister of State to ensure the best advice is made available to the general public through the widest variety of media outlets. This will allow people to take whatever action is necessary to improve their health.

I compliment The Alzheimer's Society of Ireland on its work. A long time ago I sat on a health board and a colleague was one of the first to bring Alzhiemer's disease to attention. He spread the word in a very simple and meaningful way. He spoke about having the illness and the fact that it would not go away. In bringing the disease to the attention of the general public he did a great service, particularly in identifying the early stages of dementia. This was very influential in the formation of the health policy the Minister of State has brought to the fore and is implementing.

A great deal more remains to be done, a point on which I know the Minister of State agrees with me. In that context, great commitment at ministerial level is required.

It is crucial that a diagnosis is made at the earliest possible stage and that dementia associated illnesses are dealt with a meaningful way. From time to time we hear about behaviour that appears to be at variance with the normal behaviour of individuals with whom we are familiar. That seems to indicate a change in their mental attitudes which requires early attention in terms of medication or other treatment. We have all dealt with people whose relatives have shown sudden signs of aggression or behaviour that is out of character. It is not always easy to access suitable treatment or diagnostic services. I hope we can put in place the measures necessary to allow us to identify at an early stage behaviour that gives rise to concern among family members. In some cases, an early diagnosis can prevent loss of life or the onslaught of an illness.

I commend the Minister of State, Deputy Kathleen Lynch, for the commitment she has shown on this issue. I recognise, however, that the magnitude of the issue will continue to grow for some time.

1:20 pm

Photo of Tom FlemingTom Fleming (Kerry South, Independent)
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Alzheimer's disease is the most common form of dementia, accounting for 60% to 80% of cases. Its onset is most common in individuals aged 65 years and older, although people in their 40s and 50s can also develop early onset Alzheimer's disease. Although it is one of the leading causes of death, there is, unfortunately, no way to prevent it, cure it or slow its progression. Extensive research carried out in recent years, particularly in the USA, has produced some promising medical advances and drug trials, but we have not yet seen a successful breakthrough formula.

Approximately 36 million people live with dementia worldwide. In Ireland an estimated 50,000 people are likely to have dementia. It is likely that the incidence of dementia will increase significantly in the future given our ageing population. We need to plan services in a strategic and coherent manner and in so doing we can learn from countries that have well developed policies and national strategies. The national dementia strategy is a major step forward in the delivery of services and supports and emphasises that most dementia patients can continue to live well and participate in their communities. I commend the Minister of State, Deputy Kathleen Lynch, for her contribution to the development of the strategy. I acknowledge her commitment and that of the Minister for Health to rolling out the strategy at the earliest opportunity.

The Department of Health, the HSE and Atlantic Philanthropies have pledged funding for an investment programme of intensive home supports, home care packages and dementia specific resources for GPs who are crucial as a first point of contact. I also welcome the measures aimed at raising public awareness, addressing stigma and promoting inclusion and involvement in society. It is important that we implement all elements of the strategy in an urgent timeframe. In the light of the gradual improvement in the economy and Exchequer returns, it is imperative that we prioritise the roll-out of the strategy, with delivery of the action plan for GPs to access specialist services. Early detection and diagnosis are crucial for patients. Staff training and development programmes for carers and emergency department staff are important in this regard.

It is estimated that approximately 26,000 dementia patients are living at home with the help of family carers. Evaluations suggest the number of family care givers to dementia patients is as high as 50,000. These care givers are central to the community care system but few of them receive financial compensation from the State by way of a carer's allowance or social welfare benefits. It is not easy work, but it is a labour of love for the individuals concerned. They need more recognition, support and relief for this intensive work. Families also want to be more closely involved in the process of caring, including making decisions about the services needed to help them in their care giving roles. In the absence of the required level of community care supports, a key element of the strategy will be a more formal partnership between family care givers and the institutional system of care. Families face a heavy burden in providing care around the clock and preventing their relatives from being placed in long-term care institutions prematurely. Patients are more comfortable within the home environment where this is possible. We should strive to ensure this will continue for as long as possible, with support from community and health services.

Evidence from other countries suggests a significant proportion, up to 25%, of older people admitted to hospitals have dementia, but we lack reliable data for the prevalence of dementia in Irish hospitals. As dementia is often hidden in the community, it may remain undetected following admission to hospital. Even when older people are admitted through accident and emergency departments, dementia is often overlooked in assessments. This a cause of concern because the reasons given for admitting patients with dementia are often other age related complaints rather than the patient's social circumstances such as a breakdown of care giving arrangements. The hospital experience can be frightening and disturbing for an individual with dementia who needs a consistent and stable environment that reinforces self-identity and personhood. The hospital setting, with its multiple and competing stimuli, is far from ideal for patients suffering from severe cognitive impairment. General hospital staff do not always have the necessary skills and expertise to provide dementia care. One Irish study revealed that only 5% of junior hospital staff had received dementia care training in recent years. Caring for patients suffering from dementia who exhibit challenging behaviour such as aggression, paranoia, hallucinations or sleep disturbance can be particularly difficult for hospital staff.

Once admitted to hospital, people with dementia often have worse outcomes than older people without that affliction. Evidence suggests the length of stay of dementia patients in hospitals is longer and costlier and that patients are more likely to be discharged to a residential care setting. These patients are also known to have a higher rate of other illnesses and higher mortality rates and they often acquire new dependencies as a result of being inactive for prolonged periods.

In other countries, including Scotland, the United States and Australia, innovative approaches have been adopted towards the care and treatment of people with dementia in hospitals. These include the development of dementia champion programmes, which include the appointment of specialist staff within the hospital with a dementia remit. These are qualified staff who take ownership of patients with dementia in hospitals and who help raise awareness of dementia and encourage a more person-centred approach to care. Other approaches used internationally include outreach and community based specialist dementia services which reduce the risk of hospital admission for people. There are many reasons hospital staff should be aware of whether patients have dementia, not least the fact that patients admitted with dementia are at an increased risk of developing delirium. A dementia champion programme in general hospitals would facilitate more awareness of dementia care in such a challenging environment.

There is a need to develop better hospital patient information systems that will yield data that will more accurately reflect admissions, readmissions, length of stay and discharge of people with dementia from hospitals. We need a major review of the care of patients with dementia in general hospitals in Ireland. We also need more awareness of the signs of dementia, which are often not very visible. Specific training should be provided for staff in that regard. Staff should be upskilled in the recognition of symptoms and in the communication of this information to other staff so as to improve the provision of dementia friendly care in the hospital setting.

1:30 pm

Photo of Eamonn MaloneyEamonn Maloney (Dublin South West, Labour)
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I will not recycle any of the contributions made by other Members. I commend the Minister of State on the speed with which this strategy was put together and commend her, the Department, those who worked with her and the various shareholders on confronting this condition. I find the critique of the Minister of State's announcement today rather begrudging as until now there has been nothing of the measure of this strategy, which was promised in the programme for Government. This is an important day for individuals affected by dementia. We are all aware of the ongoing effect of dementia on families.

The Minister of State mentioned that the stigma attached to dementia is a serious problem in this country. It is good she has highlighted this. We must overcome this stigma, because dementia is not a condition that is going to disappear. People are living longer and we now have a larger population of older people. This trend will continue and a greater part of the older population will suffer from this condition. Dementia does not affect all people the same way and can be more extreme for some.

This is an historic day. The strategy is now in place, but implementation is another issue. We all wish we were in a different place in terms of financial resources, but it is important to make a start on the journey to provide the best quality of life to the greatest number of people afflicted by this condition. I commend the Minister of State and those around her who have brought us to this stage today. As financial resources become more available, I hope we will see speedier implementation of this strategy.

Photo of Billy KelleherBilly Kelleher (Cork North Central, Fianna Fail)
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I welcome the opportunity to speak on the national dementia strategy and thank the Government for providing the opportunity to do so. We called for a debate on the issue some time ago, so I thank it for this response. There is significant interest on the part of all parties in this issue and in the need for the strategy to be implemented. We understand the challenge facing the Government in the context of resources, but the strategy should be prioritised in terms of resources. We need commitment and determination to ensure the strategy is implemented in full.

Fianna Fáil supports the call for the findings of the midterm review to be utilised to develop the revised dementia plan. Earlier this morning, in another context, we discussed the need to learn from assessment of what does or does not work and should continue to implement what works best when developing any strategy. We should also try to reduce the impediments to development. At times when developing strategies, we are inclined to compartmentalise them and separate them from the rest of the health services. This strategy is dependent on the health services in general being able to deliver on the needs of people with dementia.

There are approximately 47,000 people with dementia living in Ireland, most of them women. Approximately 30,000 are women and 17,000 are men. If the current trend continues, the number of people with dementia is expected to rise to almost 70,000 by 2021, but what is even more alarming is that we could have 130,000 dementia sufferers by 2041. This may seem a long way down the road, but it is critical we start to plan in advance how to provide assistance and support to this huge cohort of people. We need to plan how to provide all the services required to ensure people with dementia have support.

When talking about strategies, a key issue is the complementary systems in place that need to be augmented and reinforced. We talk about primary care and independent, supported and assisted living in the home. These all need to be put in place to ensure we have continual, evolving support for the huge cohort of people we expect to have living with dementia in Ireland by 2041. This will require a determined effort on the part of the Government, particularly in view of the fact that 2041 appears to be a long time away. It is a natural phenomenon in the Oireachtas that priority is given on an electoral cycle and individuals here and Departments do not get recognition for longer term strategic planning. This is an inevitable consequence of our electoral system. Therefore, it takes bravery and determination on the part of Ministers and Departments to follow through and plant the seeds of a long-term strategy, although they may not benefit from the consequence. I am not saying this is true in regard to everything a Minister does, but the system corrals people into planning for the short and medium term, despite the challenges to be addressed in the long-term in regard to the increase in the number of people who will be living with dementia. The strategy is clear and highlights what needs to be done and the actions already in place.

When I met with the Alzheimer Society I made a suggestion for additional resource centres. We need community centres to support people to live independently in the community for longer. We could be imaginative in how we use the resources we already have in our communities such as GAA clubs, soccer clubs and rugby clubs, which all have fine facilities but are probably not being used in early midweek. A lot of them have been grant-aided by the State with sports capital grants over the years and could be used as day centres where people could come and meet clinicians, specialists and peers to talk and otherwise interact. In the next number of years there will be huge challenges to capital programmes and I do not expect day centres can be built in every parish or community. However, they already exist in the shape of these sports centres. If the necessary infrastructure was in place in terms of personnel to support the voluntary sector we could open up these facilities. We have spoken about day centres, health centres and resource centres but a lot of the bricks and mortar is already in our communities and we should interact with organisations such as the GAA, soccer clubs, rugby clubs and maybe even schools to make this come about.

Many more younger people will have dementia in the coming years, which is something we may not have addressed as a society. We need to keep people as active as possible and we should support people with dementia in remaining with their families. We should also help the families with a member who has contracted dementia. Fear often affects a person and that person's family when there has been a diagnosis of dementia or another neurological disease. We have to ensure there are strong supports in such cases and provide information and reassurance to people that they will not be left alone to deal with their issues. This is outlined in the strategy. I have referred to the suggestion that dementia awareness training be rolled out to local communities and accommodation will be needed for that, as it is for resource centres, active age groups and various other community groups. It is in such a context that we could look at sporting organisations because there are many GAA clubs today which will not see any activity until 5 p.m. or 6 p.m. when they start their training programmes and matches.

I was alarmed by the findings of the study which stated that only 11% of long-term residential care homes have dedicated dementia units. We know that huge challenges face residential units in general with the new HIQA regulations, the fact that we have an ageing demographic profile and a projected increase in the numbers with dementia in the years ahead. We have to be brave in how we tackle this issue. We discussed how we deal with the existing demographic profile in the discussion on care for the elderly and we need to tackle this in a non-partisan and non-political way. It should not be for the benefit of Deputy Billy Kelleher or the Minister of State, Deputy Kathleen Lynch, but of society. We need to work out how we fund and put in place the resource infrastructure to care for elderly people.

The review of the fair deal is ongoing but it is going to be a huge challenge for us and we need to be honest and upfront with ourselves about how we fund care for the elderly in the years ahead. We have spoken about the need for increases in peoples' contributions but we cannot pretend that the State can indefinitely fund this out of current expenditure on an annual basis. We have to be brave and set up some mechanism to ensure there is sufficient funding on a multi-annual basis so that we can plan ahead and an individual with dementia, as well as the population in general, can know what contributions they will have to make.

There needs to be an assurance that whatever facilities are in place meet the required standards. HIQA has set a benchmark and we must continue that standard of care for our elderly people. We saw what happened to people with intellectual disabilities in Áras Attracta and that could very easily happen in the case of older people and those with dementia. In increasing capacity in community and residential long-stay facilities we must ensure standards are in place and an inspection process exists to ensure they are maintained.

There is huge goodwill in our communities towards the idea of voluntary work, which we see even in those who volunteer to canvass for candidates in elections, such as the Minister of State or myself. Other people get involved in meals on wheels or community associations such as Older and Bolder, and volunteerism is an important component across the whole spectrum of society. It is a critically important component of how we structure and support society and how we support communities and individuals within the community. There has been huge pressure on the funding programmes for voluntary organisations because there have been consistent reviews of overlapping areas to ensure that we have good administration systems and that any funding goes directly to the services for which it is intended.

We need to ensure that volunteers are supported and assisted in delivering care, no more so than in the area of dementia and other neurological illnesses and diseases. In commending the new strategy I insist that its implementation be consistently monitored and that we be brave in planning a strategy not just for a horizon of 2015 or 2016 but well beyond that, so that people in the early stages of the disease know that support and services will be available to them after that.

1:40 pm

Photo of Fergus O'DowdFergus O'Dowd (Louth, Fine Gael)
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I welcome the new national dementia strategy announced by the Minister and I acknowledge her commitment to changing the way older people are looked after in our society. I recognise also that it has been put together initially in a very difficult economic climate and as things improve I hope and expect that the strategy will expand and there will be more funding available to look after our people.

We have a large number of people who will have dementia in the future. At the moment 12% of our population are over 65 and, by the year 2046, 25% - that is one in every four - will be over 65. Clearly, a significant number of these will have dementia issues, whether it is in the initial stages or longer-term. The number of people with dementia will double over the next 30 years. Internationally, in 2010 there were 36 million people with dementia but by 2030 the world estimate is 66 million. It is a huge problem that has a personal, emotional, financial and social impact on all of us and on all society. We need to change many things in our country to deal with it. When I meet people with dementia, in many cases I find families or individuals who are invisible, isolated in their community and socially excluded.

Their families are worn out and strained, and are working 24-7 to look after them. The lack of care the community is offering them in their homes has a major negative impact.

Some two weeks ago I met a lady in her mid 70s who is dealing with her husband, who is in his 80s. He is doubly incontinent and suffers from serious dementia, and she was offered a princely amount of 18 minutes of home care help per day, one and a half hours per week. It is a disgrace and I condemn the policies that do not provide adequate home care to people who need it. There have been cuts and we have been through a very difficult time, however we must prioritise home care packages. The lady's house was in a state of bedlam and was in bits. Her life had been shattered and she had no help, nothing at all. I was shocked and dismayed. I will give another example of a daughter who is looking after her mother who is suffering from dementia. Her father, who is in his mid 70s, is also very unwell with a heart condition. The lady, God bless her, is very active in her dementia state and is up and down the stairs all night repeatedly. Both these carers are at their wits' end.

People in Alzheimer's care centres say they do not have enough money. In Dundalk, the budget has been reduced by 5% and this has a major negative impact on the people who are entitled to the care but do not receive it. The same applies in Drogheda, where the members of the Drogheda Alzheimer Society are at their wits' end trying to provide better services for an increasing number of people.

How do we change the situation? While the dementia strategy is one way of starting it, there is a more fundamental principle, which the Oireachtas should establish, namely, an entitlement to home care and home help by statute, which does not exist. We should have legislation that guarantees that people are entitled to the care, just as much as they are entitled to benefit from the fair deal if they need to go into long-term care. We have got it the wrong way around. We are spending billions of euro on putting people into nursing homes, while many of them should not go there until they reach a much higher stage of dependency, but do so because of the lack of community supports. That is wrong. The lady who is trying to look after her husband told me she would have to put him into a nursing home, although she did not want to do so. She just needs help to look after the person she loved and who loved her all her life.

We need to change the way we address this. We need much more home support and to use modern technology. In the Great Northern Haven apartments in Dundalk, there is an experiment whereby older people live in the apartments and have technology that notifies a carer, who is attending 24-7, if they get up at night or leave a window open or a tap on. When they wake up in the morning they can use a laptop or iPad to communicate with a health care worker and verify that they have taken their medication. We need to change our local authority houses to use more technology to provide support to keep people in their homes.

The public health nurse is the real hero of our society. In every case I encounter, the public health nurse is the first person who helped the person, as best they could. Good care costs a lot of money. The policy in Norway is to make the most of the good days. We can make the most of the good days for our people who suffer from dementia by keeping them happy at home for as long as we can. The last place they should go is a nursing home. They should go there only when all other home care supports have been exhausted or failed. We need a bill of rights for our elderly identifying the promises we will fulfil in looking after them. There are plenty of examples from states around the world available on the Internet. If people have statutory entitlement to community care, a bill of rights identifying how older people are treated and protocols in place for them, it will change the way things happen.

I had a meeting with the Alzheimer Society of Ireland in Our Lady of Lourdes Hospital, Drogheda regarding putting protocols in place for people who are suffering from dementia and who are admitted to an acute hospital. Such a person needs to be looked after specially and staff need to know how to treat them, given that many of them cannot talk or express what they feel or they are confused. We need these protocols in place now on a national basis. We received attention from the very top of the HSE. The quality of care for people suffering from dementia in some of our institutions is disgraceful. I have here dozens of complaints made to HIQA regarding the quality of care of people suffering from dementia. In many cases, there are not enough staff on duty to look after them. In some cases, sadly, they are treated disgracefully. I am waiting for a Bill of mine to come up in the lottery for debate on a Friday sitting. As backbencher, one hopes to make the lottery. My Bill will change the 2007 Act by giving statutory powers to HIQA to go into a home immediately to investigate a complaint that a person suffering from dementia is being assaulted. This cannot happen under the current legislation.

I spent the past few hours, with the assistance of the Minister's office, dealing with a family whose family member died in disgraceful circumstances in a HSE institution. The patient did not have dementia as such. The family complained to HIQA that they were unhappy with the care their relative was receiving. Nothing happened, and he subsequently died in disgraceful, shameful circumstances. I acknowledge the Department's commitment to get to the bottom of it.

This is just the beginning of the debate and I welcome the initiation of the strategy. However, we are not at the races if we do not look after people in their communities and homes and invest much more money in it. I accept that the degree of care the people need is a very complex issue. This week, the country is examining how we treat our people when they come into the world, and the tragic circumstances of the deaths of many babies, six or seven, in Portlaoise. We are also considering the appalling and disgraceful treatment of people suffering from dementia and how it can change. The two debates are equally important and, hopefully, they will get equal time and attention from the House and the Government.

1:50 pm

Photo of Seán KyneSeán Kyne (Galway West, Fine Gael)
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I welcome the publication of the national dementia strategy and acknowledge the work of the Minister, Deputy Varadkar, the former Minister, Deputy Reilly and particularly the Minister of State, Deputy Kathleen Lynch. The strategy was a commitment of the programme for Government and identifies the key principles to underpin and inform the full range of health and social care services provided to people with dementia, their families and their carers. I acknowledge the support of Atlantic Philanthropies and regret the comments in the past few days in this House and the Seanad regarding that organisation.. The programme will focus on the timely diagnosis of dementia and the value of early intervention with the long-term objective of making people generally more aware and understanding of the needs of people suffering from dementia and the contribution they can continue to make to society. I acknowledge the role of the Alzheimer Society of Ireland, whose representatives I met before Christmas and who were gravely concerned about the delay in the publication of the strategy. They are very happy with the strategy that has been published.

In Galway alone there are 2,364 people with dementia with up to 48,000 people nationally living with the condition. It touches every family in some way and we all know people suffering with it. Many try to get on with their lives to a degree. One has to commend all those families who care for their loved ones who suffer from this condition.

I compliment the Minister of State on this welcome strategy. I am confident it will deliver over the coming years.

2:00 pm

Photo of John O'MahonyJohn O'Mahony (Mayo, Fine Gael)
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I commend and support the implementation of the national dementia strategy. Its publication in December was both necessary and welcome because, as the country’s age profile increases, so too does the problem of dementia. Ireland’s population is aging as evidenced during the debates on the fair deal scheme. There will be nearly 1 million people aged over 65 by 2031, an increase of more than 86% or an extra 20,000 people per annum. I commend the Minister for Health, Deputy Varadkar, and the Minister of State, Deputy Kathleen Lynch, for their efforts on the fair deal scheme. It is a natural consequence that dementia will become an increasing problem that needs to be planned for with proper structures and supports put in place.

We all know of the great work done by the Alzheimer Society of Ireland and Western Alzheimers in Ballindine, County Mayo. However, demands for their services are increasing but their resources are limited, meaning they have to come up with new strategies for fund-raising.

The increased projected figures for dementia given by NUI Galway and Trinity College Dublin are startling. They suggest the number of people with dementia in the coming years could be as high as 94,000 by 2031 and 132,000 by 2041, three times higher than it was in 2011. This highlights the need for this dementia strategy. I was also surprised to learn dementia is a condition that affects younger people with almost 4,000 people under the age of 65 with the condition. This is an exceptionally vulnerable group of people about which little is known. They come under the radar and very few of them use community services. That is not surprising as they do not easily fit into service systems and structures designed for older people. This has implications for the individuals and their families because much of their care is done at home.

An estimated 50,000 family carers are looking after someone with one of six specified symptoms of dementia. Research shows that two thirds of all long-stay residents have dementia but many of them do not have a formal diagnosis. This brings on high stress levels among carers which are high by international standards.

The services in place for dementia are limited. As Deputy Kyne said, in Galway up to 2,700 people have dementia with 1,800 people in County Mayo. There are pockets of areas in these counties, such as in west Galway, where respite care services, for example, are not available. There is much work to be done. The strategy is a good start but it needs to be progressed as quickly as possible.

The overall cost for caring for dementia patients is enormous, a point which outlines the challenge facing us. I was surprised to learn that dementia is a very costly condition given its duration, as people can live for a long time after diagnosis, its disease burden and the level of disability associated with the illness over time. In fact, the overall societal cost of dementia exceeds that of coronary heart disease, cancer and stroke combined. Analysing the financial cost of dementia what is particularly striking is the fact that almost half, 48%, of the overall costs of dementia are borne by family and friends who provide the much needed care services required. A further 43% is accounted for by care in long-stay settings, while formal health and social care services contribute only 9% of the total costs of dementia. The average cost per person with dementia is estimated at €40,500 per annum.

It will be a significant challenge. However, our elderly people deserve to be looked after and the services and supports need to be put in place so they and their families can have comfort in their retired years. As we are all on the train to that stage of life, it will affect us all.

Photo of Dan NevilleDan Neville (Limerick, Fine Gael)
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I welcome the opportunity to contribute to this important debate. I welcome the Government’s launch of the national dementia strategy which is important to the many people who suffer from this difficult disease, a disease which is also difficult for their families. Families are often confused by it and the sufferer can also be upset. There is a fear factor around the whole area of dementia. We should endeavour to relieve this that by disseminating information on assistance.

I commend the Alzheimer Society of Ireland on its excellent work in assisting people who suffer from Alzheimer’s and their families. It works across the country in the heart of all communities providing dementia specific services and advocating for the rights and needs of all people living with dementia and their carers. Its vision is an Ireland where no one goes through dementia alone and where policies and services respond appropriately to the person with dementia and their carers at the times they need support.

I welcome the development of a national Alzheimer’s and other dementias strategy to increase awareness, ensure timely diagnosis and intervention and develop enhanced community-based services. The strategy sets out several principles to underpin the provision of care and supports for people with dementia.

These include taking account of dementia in the development and implementation of existing and future health policies, encouraging the participation of people with dementia in society and in their own communities as fully as possible for as long as possible, the prioritisation of end-of-life care in an appropriate setting for those with dementia, and appropriate training and supervision for all those caring for or providing services to people with dementia. In addition, the strategy directs resources to provide the best possible outcome for those with dementia and their families.

Dementia or old age should not control people's lives and rob them of what is so valuable to them, privacy and dignity. Central to the strategy announced by the Taoiseach, Tánaiste and Minister of State, Deputy Kathleen Lynch, last December is something that is characteristically taken away from people living with dementia - that is, awareness. We want to increase awareness of dementia in the community so that we can act faster and more smartly to ensure early diagnosis, treatment and all-important supports, particularly with community-based services.

It is estimated that there are approximately 50,000 people with dementia in Ireland today. These numbers are expected to increase to more than 140,000 by 2041 as the number of older people rises. I have also met some younger people with Alzheimer's, so it does not always respect age and consequently is not just an issue affecting the elderly.

The strategy emphasises that most people with dementia live in their own communities and can continue to live well and participate in those communities for longer than many people appreciate. The strategy distinguishes between those actions that can be progressed within existing resources and others to be addressed as more resources become available.

Those identified for first implementation include that clear responsibility for dementia will be assigned within the HSE. In this regard, a dedicated office of specialist services for older people has been established within the HSE to support the strategy's implementation. Clear descriptions of care pathways and better information and guidance on services will be made available to GPs, as well as to people with dementia, their families and carers.

A better understanding of dementia will be promoted, including modifiable risk factors. The strategy also promotes the use of existing resources to be reviewed to ensure that they are used in the best possible way. Research will be promoted to inform and design the delivery of dementia services in Ireland in order to be supported and given appropriate priority.

The term dementia was used for generations concerning memory loss, but it is not a specific disease itself. Dementia describes a group of symptoms affecting memory, thinking and social abilities severely enough to interfere with daily functioning. Dementia indicates problems with at least two brain functions, such as memory loss and impaired judgment or language, and the inability to perform some daily activities such as paying bills or becoming lost while driving.

Though memory loss generally occurs in dementia, memory loss alone does not mean that one has dementia. A certain extent of memory loss is a normal part of ageing. Many causes of dementia symptoms exist. Alzheimer's disease is the most common cause of progressive dementia. Some causes of dementia may be reversible with treatment.

The common symptoms include declining memory loss. Short-term memory loss is the most common early symptom of dementia. People with ordinary forgetfulness can still remember other facts associated with the thing they have forgotten. For example, they may briefly forget the next door neighbour's name, but still know the person they are talking to is their next door neighbour. A person with dementia will not only forget the neighbour's name but also the context.

People with dementia often find it hard to complete familiar everyday tasks. For example, a person with dementia may not know how to get dressed or how to prepare a meal. Occasionally, everyone has trouble remembering the right word, but a person with dementia often forgets simple words or substitutes unusual words, thus making their speech or handwriting hard to understand.

We may sometimes forget what day it is or where we are going, but people with dementia can become lost in familiar places, such as the road where they live. They can forget where they are or how they got there and may not know how to return home. They may also confuse night and day. Those with dementia may dress inappropriately, wearing several layers on a warm day, or very few on a cold day. They may also find it difficult to follow conversations or keep up with paying their bills. Anyone can temporarily misplace his or her wallet or keys. A person with dementia, however, may put things in unusual places, such as an iron in the fridge or a wristwatch in a sugar bowl.

Everyone can become sad or moody from time to time. A person with dementia may become unusually emotional and experience rapid mood swings for no apparent reason. Alternatively, a person with dementia may show less emotion than is usual. A person with dementia may become suspicious, irritable, depressed, apathetic, anxious or agitated, especially in situations where memory problems are causing difficulties. At times, everyone can become tired of housework, business activities or social obligations but someone with dementia may become very passive, sitting in front of a television for hours or sleeping more than usual. They may also appear to lose interest in hobbies.

The Department of Health and the HSE have agreed a joint initiative with Atlantic Philanthropies to implement significant elements of the strategy proposed over the period 2014 to 2017. We look forward to the roll-out of the programme.

I congratulate the Minister of State once again for the work she is doing in all four areas within her remit. In this case, the work to provide services for the elderly is being undertaken in difficult circumstances. This is because the economy has put a lot of pressure on services to all areas.

2:10 pm

Photo of Joe CareyJoe Carey (Clare, Fine Gael)
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Approximately 44,000 people in Ireland are currently living with some form of dementia. That number if expected to reach nearly 104,000 by 2037. More than 50,000 carers are also affected as each day they care for their loved ones who need that extra support.

Dementia is the umbrella term for a variety of conditions that can cause the brain to fail. The World Health Organisation describes dementia as a syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is impairment of multiple higher cortical functions. Alzheimer's disease is a form of dementia that represents the majority of cases. What Alzheimer's and other forms of dementia have in common is a high risk of behavioural disorders, including changing personalities and acting out of character.

The World Health Organisation's definition means that functions such as memory, orientation, comprehension, emotions and judgment may be affected in a person with dementia. It is important to remember that Alzheimer's is a medical condition and a disease of the brain. If the brain affects thought, feelings, personality and behaviour then Alzheimer's will affect how a loved one thinks, feels and what he or she does.

The range of symptoms can be enormous. People with Alzheimer's disease do not necessarily look sick. Although it is a physical illness, it often does not affect a person's appearance until the later stages of the disease. I welcome the work completed to date in putting a national dementia strategy into being. The Department of Health, together with the HSE, has agreed a joint initiative with Atlantic Philanthropies to implement significant elements of the strategy over the period 2014-17. This programme will promote a greater focus on timely diagnosis of dementia and on the value of early intervention, along with the long-term objective of making people in Ireland generally more aware and understanding of the needs of people with dementia and the contribution that those with dementia continue to make to our society.

People with dementia must be encouraged to participate in society and should be enabled to stay within their communities for as long as possible. I am delighted this Government, in conjunction with the HSE, recognised this fact in the case of Clarecastle day care centre's dementia unit. In late February 2013, following a near ten-year campaign, operational funding and recognition was finally given to the dementia-specific unit operating in the centre. The centre in Clarecastle is a purpose-built dementia day care facility that provides services for persons with mild and moderate dementia. I want to put on the record my thanks to the former Minister for Health, Deputy James Reilly, and Mr. Bernard Gloster, the area manager in the HSE, who took on board my representations and that of the local community and the board of Clarecastle day care centre. The dementia service in Clarecastle augments the provision of day care for elderly persons and it has operated at the site since 1999, catering for over 250 persons per week. The Clarecastle facility services a ten-mile radius and a population of over 50,000 people.

The service delivered in Clarecastle represents exceptional value for money while also offering precious respite for carers. The dementia services delivered in Clarecastle day care centre should be further enhanced, as there is a capacity to do so. Such a model of care should be replicated in other communities right across the country and such day care services for mild, moderate dementia patients should form a key part of the national strategy. I compliment the Minister of State, Deputy Kathleen Lynch, on her work and I look forward to the strategy being further developed and brought into being in the coming months and years ahead.

2:20 pm

Photo of Kathleen LynchKathleen Lynch (Cork North Central, Labour)
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I thank everyone who made a contribution, and this is clearly an issue in which everybody should have an interest. I was looking at the people who came and went from the Visitors Gallery today. Some were very small, aged between three or four years of age while others were in mid-childhood and their mid-teens. This in addition to the young adults and those of us who have gone past all those age groups. It is significant that what we are doing with the dementia strategy will affect each and every one us, whether it is as carers, people in our community or as people who suffer from the condition.

I will reply to some of the contributions, as many people raised the same issues. The €27.5 million in funding is significant and it will be divided, with mostly home-based delivery. Everybody agreed on this and we were urged to follow this route. Most of it will be delivered in the community and home. It will concern the raising of awareness, as everybody mentions, and there will be a significant element relating to research as well. Most people who know me see me as an optimist by nature. Some days, as a politician, the only way to get through the day is by being optimistic. The type of research being done on the types of dementia will ensure that although we may never find a cure - it is a degenerative process of ageing and as we live longer, certain parts of the body break down - we will find mechanisms to slow down the progress of the condition and stop the onset. That is why early diagnosis, which is a central part of this strategy, will be very important.

In my city there is research in St. Finbarr's hospital on ageing and how we age. Trinity College, Dublin, is carrying out TILDA, the Irish Longitudinal Study on Ageing. Many people have mentioned the issue of people with Down's syndrome and the fact that they develop dementia at a much younger age than the rest of the population. Within the private sector, there is research going on in pharmaceutical companies. All the research will have a significant effect on the sort of forecasting we are looking at. With the help of Atlantic Philanthropies, there is a development in St. James's Hospital of a centre of excellence for successful ageing. All that intervention and focused approach, along with the dementia strategy, will have an impact.

I listened very carefully to what Deputy O'Dowd has said. As I listened, I thought that we all want Scandinavian-type services but we do not want to pay Scandinavian-type taxes. In the middle of his contribution, Deputy O'Dowd mentioned Norway. We all want that type of service but it comes with a cost. I have met people in those circumstances as well as Deputy O'Dowd. What politicians worth their salt have not done so? It is not always about resources. Kindness, compassion and listening cost very little but sometimes we do not see that. In the instance outlined by the Deputy, there must be awareness of where to go, how that is signposted and so on.

Deputy Ó Caoláin mentioned the reports which argue this will only benefit a small number of people. We must remember as well that the €27.5 million we are talking about, which is specifically for dementia services, does not take away a person's right to other existing services. For example, there was a report in one of the national newspapers that only one in six families would have access to the service. At a certain point, one might be getting a minor home help service, and that may already be available. This is part of the jigsaw that will make up the services to be delivered. Deputy Ó Caoláin asked about renovation schemes being extended beyond 2016 but that is one of the few parts that is not my area of responsibility. I will pass his query to the Minister for the Environment, Community and Local Government, who has responsibility in this respect. General practitioners will be the gatekeepers and they will be trained.

I am delighted to constantly mention Dr. Tony Foley, who was one of the pioneers in a pilot project that is still ongoing in Kinsale. He has a complete community approach to dementia that allows people not just live in their own homes but to live in their own communities. Deputy Kelleher argued there is no long-term planning. Of all our initiatives, this is about long-term planning. It is about getting the basics right and ensuring that what we put in place will serve us well into the future. The Deputy inquired about a review, and a mid-term review is built into the strategy.

Another issue mentioned relates to age and ageing.

I was glad to see that people agreed with me and I did not have to push the door very hard. This is not about age. More than anything else, it is about a condition that can develop at a very early stage in one's life. Someone I knew quite well developed the condition at 42. While I am glad to say that happens rarely, it is something that can develop at an early age. I insisted, therefore, that this would not be about age, but about the condition. When it comes to people developing it at an earlier age, the services will be available to them. That is significant. My constant mantra is that we should stop talking about age and this is the first strategy that recognises the condition rather than the age. It has always been an issue we assumed was about us as we aged. In fact, it is not. For instance, people with Down's syndrome develop dementia at a much younger age than others. As such, the insistence must be that whether it is someone with a disability or a person in the full of their health, the condition will be treated in the same way as it is for people in later life.

I thank every Member who contributed. We can ensure in planning for dementia that the forecasts we have been given do not materialise. They will only be avoided if we are careful about how we plan for our future.