Dáil debates

Thursday, 14 May 2015

National Dementia Strategy Implementation: Statements


10:50 am

Photo of Kathleen LynchKathleen Lynch (Cork North Central, Labour)
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At the outset, I would like to thank the Ceann Comhairle and his office for giving me the opportunity to address the House on the Irish national dementia strategy and its implementation.

Irish people are living longer now than ever before and thankfully the signs are that this trend will continue into the future. Better health care, better nutrition and greater awareness of how we are managing our own health have all contributed to this and it is something to be celebrated. Not only are we living longer but a great many Irish people are staying healthy. We are enjoying full and busy lives for longer than our parents or grandparents could ever have contemplated. However, while this is something to be celebrated, longer life will unfortunately mean that more people will live long enough to develop dementia. It is estimated that there are approximately 50,000 people with dementia in Ireland today. These numbers are expected to increase to over 140,000 by 2041 as the number of older people in Ireland increases. For this reason, in our programme for Government we committed to developing a national Alzheimer's and other dementias strategy to increase awareness, ensure timely diagnosis and intervention and ensure development of enhanced community-based services.

A research review funded by the Atlantic Philanthropies, entitled Creating Excellence in Dementia Care - A Research Review for Ireland's National Dementia Strategy, was published in January 2012. A public consultation process to inform the development of the strategy was also conducted in 2012 and a report on the consultation was published in February 2013. A working group representing of key stakeholders from the Department of Health, the HSE, the medical professions and the community and voluntary sectors was convened to advise on the publication of the strategy. The working group faced a challenging task in that there was little prospect of significant additional resources becoming available. However, an extremely generous offer by Atlantic Philanthropies to fund the implementation of key elements of the strategy has allowed us to put together a concrete implementation programme.

In December 2014, the Taoiseach, the Tánaiste and I launched the Irish national dementia strategy, which sets out a number of principles to underpin the provision of care and supports for people with dementia. It advises that we take account of dementia in the development and implementation of existing and future health policies. People with dementia should be encouraged to participate in society and in their own communities as fully as possible for as long as possible. End of life care for those with dementia should be prioritised and provided in the most appropriate setting. All those caring for or providing services to people with dementia should be appropriately trained and supervised. Resources should be directed to provide the best possible outcome for those with dementia, as well as for their families and carers.

The strategy emphasises that most people with dementia live in their own communities and can continue to live well and to participate in those communities for far longer than many people appreciate. A number of actions have been identified for early implementation. Clear responsibility for dementia is to be assigned in the HSE with the establishment of a national dementia office. Clear descriptions of care pathways and better information and guidance on services are to be made available to GPs and to people with dementia and their families and carers. A better understanding of dementia, including modifiable risk factors, is to be promoted. The use of existing resources is to be reviewed to ensure that they are used in the best way possible. Research to inform the design and delivery of dementia services in Ireland should be supported and given appropriate priority.

While the initial emphasis was on doing things better within existing resources, I have already mentioned the timely and very welcome boost provided by Atlantic Philanthropies which has agreed a joint initiative with the Department of Health and the HSE to implement key elements of the strategy over the period from 2014 to 2017. The national dementia strategy implementation programme will represent a combined investment of €27.5 million, with Atlantic Philanthropies contributing €12 million and the HSE contributing €15.5 million. The 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 of the contribution that those with dementia continue to make to our society. The initiative includes the following three key elements. First, a programme will be rolled out to provide intensive home supports and home care packages for people with dementia. Second, additional dementia specific resources will be provided for GPs, who are the critical initial point of contact with the health system for those with dementia. This resource material will include training materials and guidance on local services and contact points that are relevant. The GP programme is being led by Dr. Tony Foley in Kinsale and training will be delivered in the nine community health organisations commencing in October 2015. Third, a campaign will be pursued to raise public awareness about the issue of stigma and to promote the inclusion and involvement in society of those with dementia. The involvement of Atlantic Philanthropies will allow us to do more of what we want to do sooner than would otherwise have been the case. Our agreement with that organisation provides for robust monitoring, evaluation and accountability. It will also facilitate the development of a strong evidence base to inform future policies and service design.

A monitoring group chaired by the Department of Health has been established to assist with and advise on implementation of the national dementia strategy, including the national dementia strategy implementation programme. This group includes health professionals, administrators, researchers and advocates. In addition, the group includes a person living with dementia and a representative of those who care for people with dementia. A draft implementation plan has been developed and was presented for discussion at the first meeting of the monitoring group on 1 April 2015. Feedback on the plan will be considered at the group's next meeting in June 2015.

The strategy acknowledges that while current health and social policy is focused on caring for people with dementia in their own homes, there will come a time for many when home care is no longer feasible or appropriate and long-term residential care is the best option. This can be particularly acute where 24-hour care is needed or where the person with dementia is living alone. As highlighted in the dementia services information and development centre report, A National Survey of Dementia in Long-Term Residential Care, some people need dementia specific facilities, particularly where the dementia is accompanied by behavioural and psychological symptoms such as agitation, aggression, disinhibition, wandering and sleep disturbance. These behaviours can occur at any stage of the illness but they can pose significant challenges for staff and other patients, as well as being potentially dangerous and distressing for the person with dementia. However, the majority of people with dementia currently reside in generic residential care facilities and a high proportion of existing nursing home residents are considered to be affected by dementia. The national quality standards for residential care settings for older people in Ireland, which apply to nursing homes generally, were developed from this perspective. The national dementia strategy therefore stresses the importance of residential standards generally being designed to accommodate the needs of people with dementia. The standards require service providers to deliver a person centred and comprehensive service that promotes health, well-being and quality of life. The nursing home resident must be the key stakeholder in service design from the outset. Each individual should be assessed immediately before or on admission to a nursing home so that an individualised care plan can be developed and reviewed on an ongoing basis. The care plan will set out how care is to be provided in a way that provides for the individual's wishes and health needs. The service provider must meet residents' needs, including the needs of those with dementia.

The review of the nursing home support scheme, which is due to be completed shortly, includes a general consideration of how services for the elderly are to be provided. This will include a consideration of whether pricing for residential care can better reflect the differences in care needs that inevitably arise. The current waiting time for people on the national placement list for funding under the nursing home support scheme improved significantly following the allocation of additional funding in two tranches this year. The first tranche of €10 million was part of an overall €25 million allocated to the HSE to relieve the problem of delayed discharges from acute hospitals. More recently the Government approved additional funding of €74 million, of which €44 million has been allocated to the nursing home support scheme to provide an additional 1,600 places and reduce the waiting time for approved applicants from the current 11 weeks to the previous norm of four weeks for the rest of the year. The remaining €30 million will cover the cost of additional transitional care beds through June and additional community, convalescence and district hospital beds on a permanent basis.

In addition to the nursing home support scheme, the HSE supports people to leave hospital with home care services such as home help and home care packages. Over the past number of months there has been a specific focus on the provision of home care to those in hospital requiring discharge in a timely manner. The recipients of these home supports include many people with dementia.

I regret to say that we have no cure for most forms of dementia and a diagnosis of dementia remains a challenge. However, most people can enjoy productive, fulfilling and happy lives even after a diagnosis of dementia. The aim of this strategy is to make sure that life is as good as possible for as long as possible for those affected by this condition. I am determined that the strategy will be effectively implemented and that the monitoring group I have appointed will oversee this implementation to its successful completion.

As I have often been told, we in this country are very good at strategy. Our weakness is implementation. Developing implementation alongside strategy is key to how we do things in future.

11:10 am

Photo of Colm KeaveneyColm Keaveney (Galway East, Fianna Fail)
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I am grateful for the opportunity to make a statement on the national dementia strategy.

Dementia is a deeply distressing condition, both for those suffering from it and for their families. It presents a significant and growing challenge for the Government, the State and health and social services. As our population ages, the number of people with dementia increase and in response to ongoing calls for action, late last year the Government published its first national dementia strategy. Fianna Fáil welcomes that strategy as it has the potential to change people's lives and help those vulnerable to dementia. For the strategy to become a reality, it must be implemented and must be positioned at the centre of politics and of how we approach our health service.

Fianna Fáil welcomed the publication of the national dementia strategy in 2014 and is committed to supporting and helping the implementation of that policy. The Department of Health is to conduct a mid-term review of progress in 2016 and we support the call for the findings from this midterm review to be utilised to develop a revised dementia plan. Such a revised plan must address the gaps in the current strategy, specifically, the needs of people with younger onset dementia. The revised plan must ensure it addresses the commitment to remove age discrimination as a barrier to accessing the health system. The strategy purports to be for everyone with dementia, but in its detail highlights services which will not apply to those under the age of 65 who suffer early onset dementia. Similarly, there has been little focus on residential care A recent report from Trinity College Dublin and St. James's Hospital found that only 11% of long-term residential care homes have dedicated dementia units. It is also important that we give priority to new social and community approach to how we handle dementia and to the development of a dementia friendly community.

There are just under 50,000 people currently living with dementia in Ireland. The majority of people living with dementia are women , approximately 30,000 and just under 20,000 are men. If current trends continue, this number is expected to rise to just under 70,000 by 2021 and to 132,000 by 2041. An estimated 3,583 people - 8.6% of people with dementia - have early onset dementia, and most of these are men. These figures do not include an additional circa 700 people who have Alzheimer type dementia associated with Down's syndrome. Approximately 4,000 new cases of dementia arise in Ireland every year. Local health office areas in the HSE west have the highest prevalence rates of the nine areas estimated. Roscommon has the highest share of people with dementia, at 1.4%.

The major increase in numbers of people with dementia in this country is likely to occur after the year 2020, with the numbers growing to between 141,000 and 147,000 by 2041. It is estimated that the overall cost of dementia in Ireland will be in the region of €1.69 billion per annum. Some 48% of these costs are attributable to the opportunity cost of informal, mostly family support, care to those living with dementia in the community. A further 43% of costs are accounted for by residential long-stay care, while formal health and social care services contribute to only 9% of the total costs of dementia. A significant proportion of people with dementia are aged under 65. It is estimated there are approximately 4,000 of these, many of whom are in their 30s or 40s. There are 50,000 family carers in Ireland providing care to someone with dementia.

I acknowledge the dedication, commitment and work of the Alzheimer Society of Ireland. The society makes the important point that the majority of people with dementia, over 63%, live in the community and wish to continue living in the community as a first option. It points out that research has found that the two strongest predictors of admission to care homes are whether the older person has dementia and whether or not the family is in a position to cope and care for the onset of dementia. The society has found that dementia-specific home care is a critical component to ensuring that people with dementia can live in the community. It is important this House takes every stop possible to ensure people with dementia can remain in their homes.

Experts in the field of dementia have also pointed out that the right information, support, resources and investment can help families with a member with dementia. Timely diagnosis is identified internationally as best practice. However, we have a shocking rate of identifying dementia and much dementia remains undiagnosed until at quite a late stage. As the Alzheimer Society of Ireland has pointed out, without diagnosis people cannot get the information they need, cannot access the services to which they are entitled and cannot make a decision as a family about the future in respect to the dementia. Community based dementia advisers are critical for early intervention and for helping promote the dementia awareness required in communities. This is critical in regard to how this House and society approach the onset of dementia. Since the middle of last year, the Alzheimer Society of Ireland has funded seven dementia advisers to cover specific parts of the country. However, this is not enough. We need to see a greater investment and a better network set up across the country.

It is important that dementia friendly community initiatives are developed across all communities. I welcome the fact that in my home county of Galway, the Galway City dementia friendly initiative will see the development of key local agencies that will implement a programme of training and awareness raising actions at local level and of an initiative that will ensure we have timely claiming of supports across the community. The initiative will provide dementia awareness training that can be rolled out across communities. These communities will have support from resource centres, active age groups and various other community groups. The dementia friendly initiative provides a new layer of support. The type of supports dementia friends will provide will include supports that will ensure people with dementia get involved in community activities and organisations. We as a society have a responsibility to take on ownership and awareness of such initiatives.

Fianna Fáil is alarmed by the findings reported that only 11% of long-term residential care homes have dedicated dementia units. The research on this area highlights the fact that at least six counties have no dementia provision whatsoever and that there are capacity issues in many of the units that cater for people with dementia. The private sector provides the majority of residential support services. This leaves thousands of dementia patients and their families with no option but to seek care in our hospitals. This is inappropriate. It is unacceptable that we rely heavily on our acute setting. Dementia is an issue that will escalate as time goes on, because people are living longer. The problem already exists and it is clear it will grow.

I was saddened by the fact the Government did not see fit to send a representative to the WHO ministerial conference on dementia. For the first time, last March health Ministers from across the world gathered in Geneva to share policies and best practice on dealing with the increasing prevalence of dementia in our aging population. Ireland lost out significantly by failing to send a single representative to this gathering which addressed this important issue.

The fact that the Minister, Deputy Leo Varadkar, did not think it important enough to attend or to send a Government representative exposes the Government's priority in this area.

A recent Sunday Independentarticle on 15 May confirmed that just one in 60 families would win with the State's new dementia strategy. We do not have enough focused funding in this area. I encourage the Minister to secure additional resources to roll out a more comprehensive community infrastructure in this area. The burden of dementia is deeply distressing for those who are suffering with it and their families. It presents a significant and growing challenge for the health system which will require best practice in terms of social and public policies and must be underpinned by resources.

11:20 am

Photo of Caoimhghín Ó CaoláinCaoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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Cuirim an-fháilte roimh an deis caint ar an ábhar fíorthábhachtach seo. Is galair iad galar Alzheimer agus na cinn atá gaolta leis a chuireann as do suas nó anuas le 48,000 duine sa tír seo. An bealach is fearr le dul i ngleic leis ná cinntiú gur féidir le daoine fanacht ina dtithe féin. Cinntíonn seo gur féidir leo saol níos iomláine a chaitheamh chomh maith le costas níos lú a bheith ar an Stát. Tá buairt orm nach bhfuil straitéis á cur i bhfeidhm i gceart go fóill áfach.

I hosted a briefing by The Alzheimer Society of Ireland at the end of March which afforded those of us who attended a chance to engage with both the overarching national dementia strategy and the personal experience of caring. I thank all those who came before Deputies, Senators and support staff on that day. Their stories, insights and personal experiences were hugely illuminating across all of these areas. As I said at that event, we listen today in order that we can plan for tomorrow. That is still the case.

There are almost 48,000 people living with dementia in Ireland today and over 60% of these individuals live in their own homes. The concept of dementia needs to be understood as a road, as a journey, rather than just a static point, a destination. The strategy was published in December 2014 and identifies a number of priority action areas, including better awareness and understanding; timely diagnosis and intervention; integrated services, supports and care; research and information systems; and training and education. The strategy was published on foot of a consultative process that involved various stakeholders across the sector, including clinical and patient groups. While it acknowledges that most people with dementia live in their communities and wish to continue to do so, more must be done to allow them to make adjustments to their homes. Support schemes for these renovations should be extended and run beyond 2015. Hospitals are often used to care, in the short or even the medium term, for elderly patients with dementia, despite being ill-equipped and poorly designed to provide that necessary care.

I recognise that awareness of the condition has increased. The number of calls to the national helpline which is run by The Alzheimer Society of Ireland increased by 20% last year. A monitoring group, chaired by the Department of Health, is being established to assist with and advise on implementation of the strategy, including the national dementia strategy implementation programme. Its remit is to monitor and assess progress in the implementation of the strategy. Membership of the group includes many of the members of the advisory group established to support the development of the strategy, as well as four other members, including a representative of those living with dementia, a general practitioner, a representative of Atlantic Philanthropies and a representative of the HSE’s national dementia strategy implementation office. There is a particular focus on people under 65 years with dementia and the need to make hospitals dementia-friendly from admission to discharge. This is to be welcomed. The strategy has matched funding from the Department of Health, the HSE and Atlantic Philanthropies, with the final organisation contributing €12 million of the overall €27.5 million set aside.

The national dementia strategy implementation programme will include an allocation of approximately €22.1 million for the provision of intensive home supports, roughly €2.7 million for a dementia awareness programme, with funding for an education programme for GPs and primary care teams consisting of €1.2 million and €1.5 million for the national dementia strategy implementation office.

Let us look at some of the facts. January 2015 saw the first national survey of provision for people with dementia in long-term care by the dementia services information and development centre. Some of the areas it highlighted were as follows: 54 units, some 11%, had specialist care units for people with dementia; only 66 respite beds were available in the 54 units to cater for the needs of the 30,000 people known to be living with dementia in the community; and in HSE operated facilities only one third of nursing staff and health care attendants had been specially trained. The Minister and I will both acknowledge how absolutely unacceptable these facts are. Their exposure is welcome, but the fact that they reflect the current state of affairs is most concerning.

It has been estimated that the annual cost of dementia could be in the region of €1.69 billion and the average annual cost per person with dementia is some €40,500. We know that we must do the best possible for individual patients and also realise that in order to control the State spend we must support as many individuals as possible in their wish to stay in their own homes.

I am concerned about implementation of some of the elements of the strategy. There have been reports that suggest that as few as one in 60 families who are caring for someone in their home will benefit from the national dementia strategy. While significant sums have been pledged, most of the funds will be spent on those in need of intensive care at home. The measures include additional home help, nursing and therapy services, house adaptations, where necessary, aids and respite care, both in the home and nursing homes. Not everybody who has a need in this regard will benefit substantially.

I understand Professor Suzanne Cahill, director of the dementia services centre at St. James's Hospital, Dublin, believes these services are linked with areas with "well-known hospital overcrowding problems." This, if it is the case, is a sensible approach to deal with overcrowded hospitals, but it also means that families with similar need levels are being discriminated against owing to a postcode lottery. We also know that those with the disease at earlier ages in life are often left in the ha’penny place. There are no specialist services or supports for the estimated 4,000 people under 65 years with dementia in Ireland. This issue must be addressed. I am mindful of the recent briefing in the audiovisual room and the most wonderful insight given by a young man who is his mother's carer, a dementia sufferer in her 50s.

The Alzheimer Society of Ireland has been very active on the strategy and has requested that all parties, and all opinion in the House commit to the implementation of the national dementia strategy; provide ring-fenced funding for dementia; develop a follow-up strategy for dementia based on the review of the current strategy; ensure every person with dementia who requires home care has access to dementia specific care in his or her home; and ensure that everyone with dementia has access to a timely diagnosis and appropriate post-diagnosis support including, but not limited to, a dementia adviser as a minimum standard of follow-up support. Sinn Féin fully endorses and supports these recommendations, either in opposition or in government.

We need to plan effectively for the growing number suffering from dementia. The strategy must be implemented in full. We must examine how best to fund care and support for families and individuals affected and we must plan a follow-up strategy based on how well the current strategy has been implemented. What is the Government planning for 2018 when the strategy will end? We must also ensure the upskilling of GPs and reduce any stigma around the disease. Perhaps the Minister of State has indicated what will happen after 2018, and if not, perhaps she might like to illuminate us on it in her concluding statement.

The Government must continue to fund dementia research and to improve investment in care. Carers need to be rewarded and given every support so they can help their loved one stay in familiar surroundings, if that is their choice or the safest and a manageable option. Demographic changes and an aging population will further challenge us to come up with better treatments and care pathways to help the predicted trebling of those with dementia in the coming years. As I have said before, we must remember, it is not just about our older loved ones. In the years that come, it might very well be about any of us.

11:30 am

Photo of Maureen O'SullivanMaureen O'Sullivan (Dublin Central, Independent)
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Over the years, there has been great progress in the prevention, medication and treatment of many physical and mental illnesses. However, two illnesses - motor neuron disease and dementia including Alzheimer's disease - have not shared in this, and they present great challenges. Alzheimer's disease is the most common form of dementia. Like motor neuron disease, it is progressive and irreversible, although we hope that we will see progress on this. It means a loss of intellectual function, chronic memory loss, language deterioration and personality change. Like many others here, I have experienced it in my family. I know exactly what the four aspects I mentioned mean, an I have vivid memories of my aunt, who suffered from them, and my uncle and the immediate family who were caring for her.

The number of people living with dementia has been estimated variously at 38,000, 42,000 and 47,000. It is scary that the female sufferers outnumber the male by two to one. A vast majority of sufferers are cared for at home by a family member. All too often, we see the most difficult cases, and it is reassuring to know that many people suffering from dementia continue to live well, socialise and be involved in their communities. At events organised by the Alzheimer Society of Ireland, it is reassuring to hear people with Alzheimer's disease or some form of dementia speaking of their illness and living with it. A year or two ago, I listened to Helen Rochford Brennan from Tubbercurry talking about how she was living with dementia and making the very poignant point that memories are precious and are lost to Alzheimer's disease every day.

I acknowledge the work of the Alzheimer Society, particularly the cafés. I have been to two in Dublin Central, one on the Navan Road and the other in Clareville, Glasnevin, and have seen the benefit for the carers. The society also provides social clubs and dementia advisers. I am sure others received the letter about the scheme to support national organisations. In June last year, the Alzheimer Society was one of 23 disability organisations which lost funding. Because of intense lobbying, a bridging scheme was put in place until the end of this June, which is approaching quickly. On another occasion here, I referred to the need for intellectual disability nurses to be available at accident and emergency departments for those who present with intellectual difficulties including autism, Asperger's syndrome, dementia and Alzheimer's disease. At the best of times, accident and emergency is a very difficult and disturbing place, and it must be a nightmare for people with intellectual difficulties unless there is support for them.

Ireland must up the tempo, given that many European countries, including Britain and France, are ahead of us. A year ago, David Cameron said he was making dementia a priority and allocated €300 million for research. We are told that Alzheimer's disease will reach epidemic proportions within 40 years unless new therapies can be developed. Professor Brian Lawlor, consultant psychiatrist, recently told a conference of the need to increase awareness of the illness and for more research on the cause, care and cure. Otherwise, we will have a global health crisis. We need to know more about how to delay the onset and progress of the illness. We are told keeping brain, body and heart healthy and active can help to reduce the development of dementia. There is a role for medication in delaying the progression of the illness and early detection is vital. In my family, early detection and medication was immensely beneficial and prevented the onslaught of the illness, although there were many difficulties with the memory loss.

It is alarming that 25% of carers are elderly, 75% are under financial strain and many find caring for somebody who suffers from Alzheimer's disease or dementia overwhelming at times. This is where the vital respite care comes in. I have met carers who found interaction with the HSE to be a frustrating, box-ticking exercise, for example watching television was ticked off as activity. To spend six hours watching television is not an activity. Others have found their engagement with the HSE much more positive.

VHI cover for Alzheimer related illnesses, or the lack thereof, has been brought to my attention. Sufferers are generally of advanced years and, in the majority of cases, have been paying for health cover for 40 or 50 years and have probably never made a claim. At the point in their lives when they need it, they discover the exclusion of Alzheimer's disease. Surely this is age discrimination. Health insurance is a public policy matter and is subject to Government influence in general. Given that the Minister for Health appoints the directors of the VHI, the Department of Health should have an input on this aspect.

The home care package is much more appropriate than admitting people too early into residential care. We accept the need for mental stimulation, which slows the rate of deterioration. In the majority of cases, the best place for a person is at home in familiar surroundings. I have read the criticism of the strategy's narrow focus, that it will benefit 500 particular families, and the Minister of State can take us up on this. We know how many families need support. The publication of the strategy is very welcome and the Alzheimer Society has been watching for it for a long time. The question is what will happen in 2018.

Obesity, smoking and lack of exercise are recognised as risk factors for Alzheimer's disease, and we are very conscious of those issues. There is a need for joined-up thinking with the other Departments which are involved with each of the risk factors, particularly for people at a certain age. As the Minister said, we could paper the walls of many buildings with the many strategy and policy documents, and implementation is the most important aspect. The monitoring group, and the fact that it will not wait three years but will examine the issue in a year's time, is to be welcomed. I am particularly happy that the group includes a person who is living with dementia and one of that person's carers.

Photo of Paudie CoffeyPaudie Coffey (Waterford, Fine Gael)
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I welcome the opportunity to contribute to the debate on this very important topic that transcends politics. It affects many families in this country and all over the world.

As I look around the House and the Gallery, I note we have all ages listening to this debate from schoolchildren to the elderly.

Unfortunately, most families will have a member affected by dementia or Alzheimer’s disease at some stage. I want to contribute to this debate because I have personal experience of close family members who have suffered from dementia. I want to put on the record my appreciation and acknowledgement of the professional health services which assisted my family and many others.

I commend the Minister of State, Deputy Kathleen Lynch, for bringing forward this strategy and implementation plan. It is the first strategy that will address the strong challenges dementia and Alzheimer’s present for the individuals affected and their families. A strategy is not worth the paper it is written on unless it is evaluated and monitored. Accordingly, I welcome the fact a monitoring group has been established to evaluate progress under the strategy.

The strategy will address several key areas, including home-care packages and supports for families affected by dementia. It is important we keep loved ones in their family home and environment for as long as possible. That is where they are most comfortable and stimulated most by the people they love and see every day. This will assist them in dealing with the illness and the challenges it presents. Another important area that will be addressed in the strategy is the resourcing of general practitioners in this area, as well as the other health professionals like practice nurses, who might identify the early signs of dementia when the person is in for a regular health check-up. It is important GP practices, the primary contact area, are properly resourced and the staff properly trained to recognise early signs of dementia so interventions can be made at the appropriate time.

Most importantly, the strategy will deal with public awareness which will help people recognise the challenges faced by people with dementia, Alzheimer’s and brain injuries and their families. We need to support them in as many places as possible across all sectors in society.

It is important we involve all stakeholders as early as possible which includes the individuals themselves, their families, health professionals, carers and home helps, as well as the administrators and policymakers. It is by working together that we will build capacity in our society to assist people who need help most in this area. I especially want to commend the public health and community nurses who already work in this field, supporting families in these difficult circumstances. Residential care is very important. We must ensure as many resources as possible are used to keep people in their homes.

I also want to acknowledge the work of bodies such as the Alzheimer Society of Ireland. Another body that is not recognised as much in this area is the Hospice Movement. Traditionally, it has been recognised for cancer and palliative care. However, I have seen the fabulous work of the professionals in the Hospice Movement who are now working in the area of dementia, assisting families in end-of-life situations, bringing dignity to the individuals involved and keeping people at home. Recently in Waterford, the Hospice Movement held a day-long seminar on dementia and the challenges it presents. I urge support be given for further seminars across the country to assist the Hospice Movement in its work.

Professor John Nolan and his team at Waterford Institute of Technology are doing ground-breaking international research in diet and how it impacts on brain cells and how they deteriorate over time. This research is at the early stage but Professor John Nolan, a young professor only in his 30s, is developing it and attracting international interest and investment. It is focusing on how diet affects bodily function and brain nutrition, as well as how, over time, if certain supplements are included in our diet, they will help our brain cells.

Day centres for the elderly are important. I am the secretary of a community centre in my parish. It is a key area which allows early contact, social inclusion for our elderly, as well as the possibility for early signs of dementia to be picked up. They also provide activity, stimulus and social interaction for the elderly. It is important these stay centres continue to be supported through subvention grants from the Health Service Executive. Many of them would not survive if it were not for these grants and I thank the Minister of State and her Department for providing them.

11:40 am

Photo of Mary Mitchell O'ConnorMary Mitchell O'Connor (Dún Laoghaire, Fine Gael)
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I am pleased that within months of just launching the national dementia strategy, we are here welcoming the actual implementation of this programme, as well as the real steps and actions it will include. Politicians have been promising this for decades. Today, we are really seeing progress.

Sadly, we all know people who are living with dementia and Alzheimer’s. For many, their lives are changed for ever, beyond recognition of what they once were. They should not feel isolated, alone or unsupported. Families should not feel like they have lost a loved one when that person suffering from dementia is still alive and, in many respects, well and able.

With the correct and sufficient provision of care and supports, people with dementia and Alzheimer's can continue to live a normal, happy and safe life in their own communities. It is important people with dementia can continue, when possible, to live within their own communities. This is essential for the continued happiness and well-being of both the person suffering from dementia and their families. Often, the carer of a dementia patient is also an elderly partner.

I am pleased the national dementia strategy implementation programme will represent a substantial combined investment of €27.5 million. This will include the roll-out of a much needed programme of intensive home supports and home-care packages for people with dementia. I urge the Minister to ensure this investment is wisely allocated and correctly used so the best possible outcome for people with dementia and Alzheimer's can be achieved. The welcome effect of this investment should be directly felt by the people and families who to date have felt alone, unsupported and in many cases, unnoticed.

I note this investment will go towards awareness raising, a vital point. Too many people cast dementia off as a symptom and part of their old age, as something that is inevitable and cannot be treated or assisted with. This should not be the case. Help can be sought to support and help a person cope with dementia. The problem is that so little is known about dementia. What are the signs, at what age can it begin, are there ways of preventing it and where can one find information on it? Does one get information from a GP or a district nurse? Is a contact centre or assistance group better as a first call?

Thankfully, this new programme will provide additional dementia specific resources for GPs who are the critical and initial point of contact with the health system for many people. Training materials and guidance on local services and contact points are all vital pieces of information that need to become more widely available and well-known.

Like all conditions, early diagnosis and intervention is key. A timely diagnosis can make the difference in the outcome of a person's life with dementia. This programme will thankfully promote a greater focus on timely diagnosis. By establishing a national dementia office, we are finally giving real and fair recognition of the condition. It will remove the stigma and offers people a point of contact.

I look forward to receiving the final implementation plan due in June and urge the Minister of State not to delay its implementation.

11:50 am

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
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I wish to share time with Deputy Fitzmaurice.

Acting Chairman (Deputy Bernard Durkan):

Is that agreed? Agreed.

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
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I am grateful for this opportunity to speak on the national dementia strategy, which I welcome. It contains some excellent recommendations, but will it be implemented? When I heard the figure of €27.5 million mentioned, my instinctive reaction was to ask whether it would benefit people. That is the real question and it is something of which I have yet to be convinced. We now have a situation wherein the elderly population, which nowadays means those aged 80 and over, will rise from its current population share of 2.9% to as high as 10.2% in the coming years. We must be prepared for such an increase.

Over the next couple of years, the population of this island will rise to 5.3 million according to the European Commission's ageing strategy report. Sensible planning is therefore essential and we urgently need to proceed with this strategy. In discussing such strategies, however, we should not con people but rather ensure that everything is done properly.

The hypocrisy of some people in this debate when dealing with these issues must be challenged. As an Independent Member of the Oireachtas, I will always challenge that. For example, this morning we are talking about the dementia strategy while at the same time we have had cuts to services for adults with physical and intellectual disabilities. Nine young adults contacted me this morning from St. Michael's House in that regard.

Yesterday, we learned that Tusla has cut €81,000 from the budget of the Disability Equality Specialist Support Agency, which provides courses and support for families of those with disabilities. I know it is the responsibility of the Department of Children and Youth Affairs, but taking €81,000 from an excellent project for adults with disabilities is unacceptable. This is especially so in the current climate when the recovery has started.

An even worse situation arose last week concerning a group of adults with Down's syndrome. They have been doing an excellent educational course in Trinity College, but they are short €1,000 to complete their studies. These sums are not "big bucks", so we need to get our act together. We should not exclude people with disabilities by depriving them of the services they require.

Dementia is characterised by a progressive cognitive impairment and is associated with the impairment of functional abilities and, in many cases, behavioural and psychological symptoms. Many different diseases can produce the symptoms of dementia, but Alzheimer's accounts for the majority of cases and vascular dementia is the second most common sub-type.

Despite the strong association between dementia and old age, it is not solely a disease of the elderly. Significant numbers within the overall dementia population are not old, including, for example, those with Down's syndrome. I am very conscious of this as the parent of a daughter in her mid-20s with Down's syndrome. I am also a former chairperson of the Dublin branch of Down's syndrome Ireland. People with Down's syndrome face an increased risk in this regard, which is something we must plan for in future.

It is estimated that currently there are approximately 4,000 people under the age of 65 with dementia in Ireland. We need to plan for this situation as we can see the challenges ahead. We must also ensure that those with disabilities receive the necessary services, so I hope the €27 million will be spent wisely to provide such facilities. It is unacceptable to cut funding for such services in any inclusive, democratic society.

The OECD and World Bank said recently that gross income inequality is growing. This has to be identified as a serious impediment for future economic growth. We must deal with inequality in our society, particularly when it comes to support services. I welcome the national dementia strategy and hope that it will be implemented because many people need the support of such services.

Photo of Michael FitzmauriceMichael Fitzmaurice (Roscommon-South Leitrim, Independent)
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I thank Deputy Finian McGrath for sharing time with me. I represent the constituency of Roscommon-South Leitrim. County Leitrim has the highest number of people, per capita, with dementia, while County Roscommon has the second highest. The statistics show that our population is ageing and every family has someone, be it a cousin or other relative, who has been touched by dementia. Early intervention is crucial for such people. Clarity is required through diagnosis, as early intervention is so important.

Towns should be adapted for those with dementia so they can go shopping, for example. There should be a premises in each town where such people could have a cup of tea and feel safe. Community awareness of dementia through education is also required so that townspeople will take care of those affected. In that way, an outlet can be provided for those with dementia. Such a strategy should be pursued in every county in order to facilitate those suffering from dementia, as well as their families.

I intend to make a pre-budget submission on the lines of what happens in Britain where the purchase of facilities and services for dementia sufferers does not incur VAT. I am aware of families that try to keep a parent suffering from dementia at home. One can buy many items, including an electronic wrist-strap that can close a door and prevent it from opening, VAT-free in the UK. We should emulate this novel idea of removing VAT from such items. Such a measure would actually save the State money.

I have met a person in Athlone who designed a house for a dementia sufferer. Such buildings allow those with dementia to remain longer in their family home. We should examine this approach.

It is important to ensure that the public are aware of the difficulties surrounding dementia. I understand that €15 million will be made available to the HSE for the national dementia strategy through Atlantic Philanthropies. I ask the Minister of State, Deputy Kathleen Lynch, to ensure that the money is ring-fenced for dementia care. I know it is being matched 50-50, but it should be put to good use.

In this regard, the Minister of State should also look at the west of Ireland, including Roscommon and South Leitrim, where figures for dementia are very high. I urge her to implement pilot dementia projects in the places that are most affected. Dementia sufferers deserve comfort, as do their families.

Debate adjourned.