Mary Butler (Waterford, Fianna Fail)
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I move:

“That Dáil Éireann:

notes that:

— the World Health Organisation has described dementia as one of the most serious social challenges facing the world today;

— dementia is a life-changing condition both for the person and for their family;

— age is the main risk factor for dementia and as a result, the population of those living with dementia will grow exponentially over the coming years as Ireland’s population ages;

— approximately 55,000 people in Ireland are currently living with dementia;

— for every one person with dementia, three others are directly affected;

— one in three people aged over 65 will develop dementia;

— it is estimated that the number of people with dementia will double in the next 20 years and treble in the next 35 years;

— there are an estimated 4,000 people aged under 65 in Ireland living with younger onset dementia;

— it is estimated that half of people with dementia never receive a diagnosis;

— the majority (63 per cent) of people with dementia live at home;

— the annual cost of dementia is €1.69 billion per annum, 48 per cent of which is attributable to family care;

— people with dementia have the same human rights as every other citizen, but in addition to the impact of the condition, they face cultural, social and economic barriers to fulfilling these rights;

— insufficient provision for home help and home care packages channel people to long-term care, causing the institutionalisation of people with dementia;

— people with dementia are high users of health and social care services;

— some 25 per cent of people in acute hospitals are living with dementia and it is estimated that 89 per cent of people in long-term residential care have dementia;

— hospitalisation is associated with functional decline among people with dementia;

— while people with dementia access care and support through disability, mental health and neurological services, the majority of people, if they receive care and support, do so through older person’s care services; and

— people with dementia have a preference to remain living at home for as long as possible and, with the right support, this is possible for the majority;

acknowledges that:

— Ireland’s first National Dementia Strategy was launched by the Government in December 2014;

— the Department of Health and the Health Service Executive (HSE) have allocated €14.7 million in matched funding to a grant from Atlantic Philanthropies, generating a combined total of almost €30 million to implement three key areas of the National Dementia Strategy — intensive home care supports, GP education and training, and dementia awareness;

— a National Dementia Office has been established within the HSE as part of the National Dementia Strategy Implementation Programme;

— a Charter of Rights for People with Dementia highlighting the specific rights of people with dementia has been published by the Alzheimer Society of Ireland and Irish Dementia Working Group;

— in 2012, the World Health Organisation and Alzheimer’s Disease International issued a report explaining that dementia must be treated as a global public health priority as the condition affects more than 35 million people worldwide;

— a G8 (now G7) Dementia Summit was held in London in 2013, leading to the establishment of the World Dementia Envoy and World Dementia Council; and

— the World Health Organisation hosted the first ever Ministerial Conference on Global Action Against Dementia in Geneva in March 2015, leading to the creation of a Global Dementia Framework; and

calls for:

— progressive increases in investment towards home care supports for people with dementia in forthcoming Budgets, so as to meet the needs of people currently living with dementia in the community, and to provide flexible, individual needs-led health and social care services;

— aspects of the Nursing Home Support Scheme to be examined for home care (such as the standardised process for assessment), certainty of entitlement and centralised, multi-annual, ring-fenced funding;

— strategic and long-term planning for investment in dementia, including ring-fenced funding for dementia;

— adequate resources to ensure full implementation of the National Dementia Strategy;

and

— the development of a revised and reformed dementia strategy that prioritises dementia care support in communities and within the home.”

I am pleased, as both my party's spokesperson on older people and public health promotion and as chair of the all-party dementia committee, to table this motion and I thank my party colleagues for agreeing to make the time available for us to discuss it this evening. I understand too that the Government has accepted the motion and I welcome that. I am hopeful that Members from all political parties and none will support this motion.

This is an issue on which we need to build the broadest possible consensus. We need to make a strong and united stance in support of people living with dementia. The 2012 report, Future Dementia Care in Ireland, published by academics in TCD and NUIG, states in its introduction that, "Since the turn of the millennium, dementia has not simply stepped onto the national stage, it has, metaphorically speaking, put on its running shoes and sprinted into the very centre of the policy, service and research arena, taking every opportunity along the route for its messages to seep into the public consciousness."

As the motion points out, the World Health Organization has described dementia as one of the most serious social challenges facing the world today. Dementia is a life-changing condition both for the person and for his or her family. This motion will rightly put the spotlight on what supports are needed for people living with dementia and where we feel the Government must step up its service to ensure that every person living with dementia has the best possible quality of care and, above all, quality of life. Age is the main risk factor for dementia and, as a result, the population of those living with dementia will grow over the coming years as our population ages. Approximately 55,000 people in Ireland are currently living with dementia and for every one person with dementia three others are directly affected.

Dementia can be extremely challenging for family care givers and the helplessness associated by many with advanced dementia brings with it a fear and a stigma which make living with dementia even worse. It is essential that people living with dementia remain connected with their family, friends and local communities to reduce social isolation and loneliness. Dementia should not mean people stop doing the things they love, but as times go by they might need support to do so. One in three people aged over 65 will develop dementia and it is estimated that the number of people with dementia will double in the next 20 years and treble in the next 35 years. The majority of people living with dementia are women, although of the some 4,000 people with an early onset diagnosis, most are men. Those with younger onset dementia quite simply feel that there is nothing out there for them and there needs to be more appropriate supports put in place for people under 65.

These figures do not include an additional approximately 700 people who have Alzheimer's type dementia associated with Down's syndrome. Approximately 4,000 new cases of dementia arise in Ireland every year and there is significant regional variation in estimated prevalence rates. It has been estimated that the overall cost of dementia in Ireland is just over €1.69 billion per annum, with 48% of these costs attributable to the opportunity cost of informal, mostly family, 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. It is also estimated that half of those with dementia never receive a diagnosis. Diagnosis is still a major issue and people are either not getting diagnosed or it is delayed, which impacts on treatment and services.

Under the current national dementia strategy there are new GP training and HSE awareness programmes, but more could and should be done. Dementia awareness and education is a key intervention. It is only through greater awareness about the impact of the condition that people can live well in their communities and the stigma of dementia can be broken down. Nearly two thirds of people with dementia live at home in the community and that is where they and their families would prefer them to be. People with dementia have a preference to remain living at home for as long as possible and, with the right support, this is possible for the majority. The current national dementia strategy commits to providing 500 home-care packages. However, only 72 people are in receipt of home-care packages under that strategy. The question is when this will be rolled out in full.

People with dementia are high users of health and social care services. They also have the same human rights as every other citizen, but in addition to the impact of the condition, they face cultural, social and economic barriers to fulfilling these rights. Insufficient provision for home help and home-care packages is effectively channelling people to long-term care, causing the institutionalisation of people with dementia. Some 25% of people in acute hospitals are living with dementia and it is estimated that 89% of people in long-term residential care have dementia. Hospitalisation is associated with functional decline among people with dementia. Keeping people out of hospital and at home is cost effective and a clear preference for people so it must be prioritised.

There are also a number of obstacles that prevent people with dementia from accessing general home-care services. One of these obstacles is the inappropriate care needs assessment which fails to capture the needs of people with dementia, such as the story of the woman who can cook for herself but who forgets to eat and needs to be reminded, or the person who goes wondering and just needs someone to sit with them. There needs to be standardised needs assessment nationwide, backed up by dementia-specific training for staff. There are also inconsistencies across the country in the types of home-care services provided.

Our motion calls for progressive increases in investment towards home-care supports for people with dementia in forthcoming budgets, so as to meet the needs of people currently living with dementia in the community and provide flexible, individual needs-led health and social care services. We also want to see aspects of the nursing home support scheme examined with a view to applying them to home care, such as the standardised process for assessment, certainty of entitlement and centralised, multiannual, ring-fenced funding. Strategic and long-term planning for investment in dementia, including ring-fenced funding for dementia, should be allied to adequate resources to ensure full implementation of the national dementia strategy. It is also timely now to prepare for the development of a revised and reformed dementia strategy that prioritises dementia care support in communities and within the home. The national dementia strategy ends in 2017, so the planning of the new strategy should get under way immediately.

Dementia costs more than cancer, heart disease and stroke combined and yet, as an illness, it fails to attract commensurate political and budgetary attention. We must also remember the carers. As the World Health Organization rightly says, "dementia is overwhelming for the caregivers". As one family carer told the Alzheimer's Society for its Impact of Caring booklet last year:

Early Onset Dementia is not an illness that you contemplate in your 50s and the role of a carer isn’t straightforward or easy. Keeping life normal is the ultimate struggle. The Government needs to do more to enable people to keep living in their homes and to resource their caregivers to provide much needed care. Caring for Mam has taught me how to find my voice as a carer and to use it to fight for what she needs.

This Dáil should vote to give both the carer and her mother what she needs. I hope we will have cross-party support for this motion.

Billy Kelleher (Cork North Central, Fianna Fail)
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This is a long and detailed motion but it is also non-contentious and I compliment Deputy Mary Butler for her work in researching and formulating it. Many organisations advocate on behalf of people with dementia, Alzheimer's disease and other neurological illnesses. We are tabling the motion to give everybody the chance to plan ahead for what is going to be an avalanche of challenges for the State, society and many individuals. As Deputy Butler said, within 30 years 150,000 or 160,000 people will have dementia, Alzheimer's or other neurological diseases.

That poses significant challenges and we will fail future generations of people suffering with dementia if we do not accept that we have to start planning now, not only in the context of what we say but in what we do in terms of infrastructure, support and training services, and training professionals to enhance the capacity of the State and society to deal with something we know will happen.

The statistics and empirical evidence are available. Let us be honest. We have 55,000 people with dementia and we do not have the supports and services in place nor the infrastructure, both built and personnel, to support that. If we continue as we are, we certainly will be denying many any opportunity to live with dignity as independently as is practical with their conditions and allow them remain in their home or community for as long as possible. It is the right thing to do for many reasons. It is right because it is proven, medically and clinically, that home is the best place for a person with dementia or Alzheimer's disease. If we do not put these supports in place now, we simply will not be able to cater for them in the community and we will have a situation where we will be denying them their rights and entitlements, herding them into nursing homes and acute hospital settings, and not allowing them to live with dignity and to fulfil their opportunities. In that context, the motion is non-contentious but lays out the obligations we have and the services we must put in place.

There are areas where we have failed dramatically in terms of how we deal with community services. Obviously, we have the HSE and the statutory community services that are part of that and underpin it, but there is also a significant cohort of people and goodwill in the voluntary organisations. As I drive past the closed doors of the fine wheelchair accessible facilities of a GAA, rugby or soccer club or other community organisation that has been funded by the State, I wonder why we are not more imaginative in how we use these facilities to ensure people have a place to go where the HSE would provide services and supports in communities. If we accept that we will have significant challenges, we must be creative in how we confront them and in how we come up with solutions to address them. In the context of primary care teams and community care settings, although we do not have the physical infrastructure in place in many communities, we have a lot of goodwill with communities and voluntary organisations. It would be beneficial if one could underpin that goodwill with statutory supports and using those types of facilities which exist throughout the country. We all talk about the primary care centres, and if we are honest, the roll-out of those has been quite slow. We have facilities available and we should be imaginative. It would allow people to interact within their community and seek the supports and services required within their community and as near as practical to the home setting. It is something we are not harnessing beneficially for the community and the individuals who would avail of that service.

Given where we have come from as a people in recent years and the changing demographics, not only in terms of neurological diseases and illnesses but also in terms of age profiling, we are brought back to a number of issues. While we wait for the Committee on the Future of Healthcare to come up with a strategy to develop our health care system, there are some knowns we can address. Training programmes should be put in place to ensure we have the professionals and the capacity to deal with what happens next year, in four years' time, eight years' time, 12 years' time and right up to 2046 when we will have 150,000 people with Alzheimer's disease, according to the World Health Organization, the HSE and the Department of Health.

We have certain information we have not looked at. We should conduct the assessments. There is no need to have a grand plan for this. We know there will be considerable demands in certain areas, such as community services, care for the elderly and supporting the elderly in the home care setting and all that requires. What we have in terms of personnel, training programmes and professional enhancement programmes is limited in turning out the necessary number of staff in the form of quality graduates, professionals and clinicians, ancillary staff and allied health professionals. It has to be asked if one of the reasons we slow down this enhancing of capacity is because we do not want to recruit them when they graduate or qualify. We must look beyond that and not merely make the effort to ensure we have sufficient capacity or else we will repeatedly have shortages of nurses, allied health professionals, nurse specialists, consultants and GPs.

The national dementia strategy is a new strategy. It is short term in that it is only for three years and then we will have to look at the process again. My experience is that we are fairly good at drawing up strategies. Professor Tom Keane, who implemented the cancer care strategy, was before the Committee on the Future of Healthcare today. He was presented with an exceptionally good strategy. It had been through the cancer forum. There was broad buy-in from the various stakeholders in society for the delivery of cancer care, but the critical component was full buy-in from the State, political cover and the resourcing put in place to implement the strategy, and it was implemented. We have many strategies but there does not seem to be the political will to resource and prioritise certain areas to implement the strategies. This area is one we know we have to start planning for in the here and now or else we will be failing many individuals and their families and broader society. From that perspective, it is time for the Department and the HSE to step up to the plate, look at what is required in the short and medium term and put plans in place to address that for beyond the horizon.

Deputy Mary Butler highlighted why we tabled the motion. It is non-contentious and has been accepted by everybody in the Dáil. We knew that would be the case when we tabled it because everybody in the House is conscious of the needs and obligations that should be placed on the health and broader community services to deal with this issue. The motion highlights this and keeps it to the fore with policy-makers, which includes the House, the Government, the Department of Health, the HSE and advocacy groups. We can often forget what is beyond the horizon, and much Government policy is short term. It normally looks not much further than the next political cycle and general election. That is not a criticism, merely an observation of most western world democracies where the cycles are short and targeted. Our policy-makers need to be able to look beyond that in terms of developing policy.

The Minister of State, Deputy McEntee, has obligations in terms of the present dementia strategy which have to be fulfilled. She needs to expand the home care packages and ensure quicker diagnosis is available. I note that many suffering with dementia have not yet been diagnosed and may never be because of poor diagnostic services. Those are areas the Minister of State needs to address: home care, beefing up the community care system and its supports and expanding primary care teams. If we are to wait for the primary care centres to be established to enhance our primary care structures, I can assure the Minister of State we will be forever talking about when we will roll out primary care. We have become obsessed with the primary care centres and we have not instilled within the community the belief in the primary care team concept where all the specialties, State agencies, individual clinicians such as the GP, the nurse and the nurse specialist, and consultants work with the acute hospital in discharging patients from hospitals into the community and keeping them there. That is all still disparate and scattered and there is an obligation on us to deal with that. In discussing the dementia strategy, we need to ensure the primary care strategy, which has been around a long time, is implemented and resourced in full.

If we do not do that, all the other areas referred to in the motion will fall and that means we will deny many individuals, their families and future generations the opportunity to live with dignity at home for as long as is possible and practicable, for their sake but also for the sake of the health service and to ensure people are retained in the community as opposed to being in the acute hospital setting or in long-term residential care. I commend the motion to the House.

Helen McEntee (Meath East, Fine Gael)
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I thank the Deputy for introducing the Fianna Fáil motion, which I accept. I believe it reflects much of Government policy and it effectively describes many of the issues and challenges that will arise in terms of supporting those with dementia. We in this Chamber know the figures but many people are not aware that 4,000 people in Ireland are diagnosed with dementia every year, which is 11 people a day. As Deputy Kelleher pointed out, 55,000 people in Ireland live with dementia. Dementia prevalence is set to increase in line with our increasing ageing population, but it is the case that dementia can also strike at a much younger age. I recently met Ms Kathy Ryan, who along with her two sons took part in an awareness campaign. Unfortunately, she first began to see symptoms in her early 40s. That is why we must act and plan ahead.

The challenge facing us is to support those who develop dementia and their families as much as we can, and in doing so to recognise that a great many people can live well with dementia for far longer than most people appreciate. When a person first realises he or she may have dementia, there is often a great deal of fear. There is fear among those affected but also among their families and friends. There is also much confusion about what it means, what happens next, what people can do, where they can go and what advice and assistance is available. They do not know how to access or indeed navigate the relevant public services and supports. I acknowledge the work of the Alzheimer Society of Ireland, which acts in conjunction with the HSE, for the services, assistance and listening ear provided at local level. It is very much an invaluable service and I know we would be lost without it in my county.

Far too many people feel that the life of a person diagnosed with dementia is effectively over. However, life is far from over for a person diagnosed with

The strategy also contains 21 additional actions to be prioritised as resources become available. In parallel with the strategy the Department of Health, the Health Service Executive and the Atlantic Philanthropies agreed to co-fund a national dementia strategy implementation programme over three years to implement specific elements of the strategy, which represents a combined investment of €27.5 million, of which the Atlantic Philanthropies contributes €12 million and the HSE €15.5 million. Key elements of the initiative include the establishment of a national dementia office in the HSE, the roll-out of a programme of intensive home care packages for people with dementia, the provision of additional dementia-specific resources for GPs and primary care teams to include training materials and guidance on local services and contact points, and measures to raise public awareness, address stigma and promote the inclusion and involvement in society of those with dementia. Sometimes people hide their illness or the fact they have been diagnosed, and that is something we must address.

The roll-out of intensive home care packages commenced in January 2015, and monitoring of the allocation and uptake of the packages is ongoing over the lifetime of the strategy. Up to 500 people with dementia and their families are expected to benefit from intensive home care packages over the lifetime of the implementation programme. Understand Together is the second strand of the national dementia strategy implementation programme. It is designed to raise public awareness of dementia and to build community support for people with dementia, their families and carers in a compassionate and inclusive way. The campaign is being led by the HSE and it was developed with partners, including the Alzheimer Society of Ireland and GENIO. I am pleased to say the campaign is being launched next Monday, 24 October.

The third strand of the implementation programme is the PREPARED project which is based in UCC. PREPARED is designed to upskill GPs in dementia diagnosis, and it will train GPs and primary care teams in the management of dementia. Training must be introduced as soon as possible and, where possible, across the board.

Those with dementia require services across many care streams, and that is acknowledged in the national dementia strategy. For example, given the prevalence of dementia in relevant age cohorts, it is inevitable that many of those in receipt of home care will have some degree of dementia. Dementia also arises as a co-morbidity with other conditions, and there are practical reasons it would be difficult and might not make sense to establish a separate funding stream for dementia services. Instead, my priority is to develop services in order that all those in need, including those with dementia, can get an early diagnosis and also all the services and supports they need when they need them. I appreciate that it will take us some time to get to that point, but we have made a real start in terms of the work, which must continue.

The motion calls for progressive increases in home care supports for people with dementia, ring-fenced funding, a scheme similar to the nursing homes support scheme, and a revised dementia strategy. I will deal with the issues one by one. The national dementia strategy already acknowledges that health and social care policy is focused on caring for people with dementia in their home. At a wider level, it is stated Government policy to facilitate older people, including those with dementia, to stay in their home and community for us long as possible. It is not appropriate, therefore, to recast the national dementia strategy which was completed only relatively recently and is still in the course of its implementation. Our energies and resources are better directed towards implementing the strategy effectively rather than trying to rewrite it, given that it already includes what is being requested. While the strategy is set out over three years the intention is that it would continue to develop and evolve, but I do not envisage starting again from scratch. The foundations have been laid and the intention is to build on them.

As well as the intensive home care packages that I have mentioned, a very significant proportion of those in receipt of the HSE's normal home care services have some degree of dementia, and those with the greatest care needs are prioritised in that context. Home support services across the country are being stretched by demands from more people and for more hours outside of core hours, which comes at a cost. Activity at the beginning of last year was at an all-time high and we have had to try to deal with that. Despite the fact that public finances are still very tight, we have responded to service pressures by providing additional resources this year and into next year as indicated in last week's Budget Statement. I agree with the Deputy that there needs to be a particular focus and priority on home help. That is the reason overall funding for services for older people has increased to €765 million, which is an increase of €82 million on the 2016 service plan. More than 80% of funding has focused on home care in particular. While we encourage people to stay at home for as long as possible, the nursing homes support scheme will be funded to the level of €940 million in 2017, which will allow the approval of funding to remain at a maximum of four weeks.

It is clear the existing home care service supports many people with dementia to remain living in their home. The single assessment tool, which is being piloted for older people in a number of hospitals and communities, will improve the provision of far better levels of data on people with dementia. It is intended that as it is rolled out in the coming years, this tool will be used to assess people seeking home care services countrywide on a standardised basis. The data will allow us to prioritise home care allocations more accurately on the basis of care needs, including for those with dementia.

The motion calls for a review of home care based on the model of the nursing homes support scheme which supports residential care. I have asked the Health Research Board to examine international approaches to the financing and regulation of long-term home care. Stemming from that, the Department of Health will develop policy proposals for the financing and regulation of home care services. The motion refers to the work of the World Health Organization, WHO, to make dementia a global health issue and to encourage member states, international organisations and non-governmental partners to work together to meet the challenge of dementia. The WHO has recently launched a consultation on a global action plan on the public health response to dementia. My Department has welcomed the proposal to develop an action plan and is leading the Government's response. The Department of Health and the HSE also take part in an EU governmental expert group on dementia and we are a member of an OECD working group that is looking at the development of dementia indicators.

Other speakers mentioned that family carers are a backbone of care provision in Ireland and the Government has sought to recognise that through the publication of the country's first national carers' strategy in 2012. The guiding principles of the strategy state that carers will be recognised, supported and empowered. The strategy also outlines that training and skill development for carers are to be provided by HSE staff such as public health nurses and through HSE and dementia elevator programmes which are available free of charge.

I agree with the Deputy that there needs to be a broad consensus on the issue, which is one on which we need to work. The strategy that has been put in place is a foundation. It is something on which we must build and that we must adapt where possible.

As the strategy is at an early stage, we need to make sure there are resources there to fully implement it. It is something I will prioritise in my time as Minister of State here.

Pat Gallagher (Donegal, Fianna Fail)
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Tá an Teachta Ó Caoláin ag roinnt a chuid ama leis an Teachta Funchion.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I welcome the opportunity to speak on this important motion. I commend Deputy Mary Butler for bringing it forward. We will be fully supporting the proposal.

The provision of health and social care services for people with dementia has become an increasingly important issue. That is set to continue as a result of our ageing population, longer life expectancy and the expected trebling of the numbers of people with dementia in the coming years. Health and social care services do not match up with need and are often inconsistently provided, if at all. Of the 48,000 people living with dementia in this State, it is estimated that 63% of them reside in their own homes. The national dementia strategy acknowledges this and the fact that most people with dementia who live in their communities wish to continue to do so. This is not always possible. More must be done to ensure that every person with dementia who requires home care has access to dementia-specific care in his or her home. The Alzheimer Society of Ireland has been very active on the national dementia strategy and has requested that all parties commit to its implementation, an aim of which is to ensure that every person with dementia who requires home care has access to dementia-specific care in their own home. Sinn Féin fully endorses and supports this recommendation and is committed to the full implementation of the national dementia strategy. We are also of the strong belief that when implemented, preferably in full, there should be a follow-up strategy based on a review of the current strategy’s implementation and effectiveness.

The Government must improve investment in care. Carers need to be rewarded and given every support so they can help their loved ones stay in familiar surroundings, if it is their choice or the safest and most manageable option.

In our alternative budget proposals for 2017, we also identified housing adaptation as a critical area of importance for those with specific health needs. The existing local government adaptation grant schemes are chronically under funded. Therefore we committed to increasing the central funding of these grant schemes by 50% through the allocation of an additional €15.75 million, a measure which would especially benefit people with dementia and their carers. Additionally, we believe it is of critical importance to 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. Adequate training must also be provided throughout the health and social care services for staff dealing with people with dementia.

I will revert to one of my initial points about our ageing population. Improved health and longevity should be seen as an opportunity as well as a challenge, with older people contributing to our society. The words of the democratic programme of the first Dáil Éireann resonate as loudly today as they did back then. We should be committed to the care and support of Ireland’s older people "who shall not be regarded as a burden, but rather entitled to the Nation‘s gratitude and consideration".

It is also important to speak about our older people in the context of this motion and their right to choose how best they will be supported as they age. The vast majority of older people prefer to live out their lives in their own homes if at all possible. Current Government policy is supposedly oriented in this direction but has failed in practice. Cuts to home help, home care, housing adaptation grants, carers’ supports and other services have resulted in more people than necessary going into long-term residential care. It has been estimated that possibly up to one third of people in nursing homes could be at home if adequate supports were provided. A greater emphasis on community-based care has the potential to reduce the number of older people requiring nursing home care.

While most care is provided for people living in their own homes, the bulk of State spending is on nursing homes. In 2015, €315 million was allocated for home help and home care, compared to €933 million for nursing home support. Home support services as part of a comprehensive programme of reform, with emphasis on the home and the community, must be introduced. The serious deterioration in the pay, terms and conditions of those workers and carers who provide care for older people at home, in the community and in residential settings must be addressed. Most older people who require care and assistance with daily living are looked after by unpaid family or friends in their homes. It is vital that the role of carers is fully recognised and that current State supports for carers are enhanced. Sinn Féin opposed the cut of €325 that was made by the Government to the respite care grant and provided for its restoration in each of our annual alternative budgets since. Respite care involves giving families and carers help in caring for their loved one for a short period. This care is provided by the HSE and by voluntary organisations. Current provision is far short of what is needed. Without adequate respite, family carers are themselves left more vulnerable to ill-health.

While the tendency in one's address of dementia is to focus on older people, there is also the sad reality of younger onset dementia. As the motion before us states, an estimated 4,000 people under the age of 65 are now affected. In that number, are people in their early to mid-50s, with all that represents for their loved ones. It is also appropriate to mention the key contribution of Atlantic Philanthropies whose generous support has helped to develop the national dementia strategy implementation plan including the establishment of the national dementia office. It is not just nice but right to thank Atlantic Philanthropies.

Special thanks are also due to the Alzheimer Society of Ireland and the many local ASI groups across the country. Founded in 1982, the Alzheimer Society of Ireland will celebrate 35 years of service and support for Alzheimer's disease sufferers, including those with dementia, in 2017, which is just around the corner. I wish to record my personal thanks, as I have done previously on the floor of the House, to the County Monaghan branch of the ASI, to Mae Murphy and all at the Drumkill day care centre in Threemilehouse in my county of Monaghan. My family will always appreciate the great work they do. I also record my admiration and great respect for all achieved to date by the County Cavan branch of ASI. Molaim iad uilig. Mar fhocal scor, cuirim fáilte arís roimh an rún seo. Is dócha go bhfeicfimid dul chun cinn mór i leith cúraim do dhaoine le néaltrú san am atá amach romhainn.

Kathleen Funchion (Carlow-Kilkenny, Sinn Fein)
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I welcome the motion and commend Deputy Butler for bringing it forward. I am glad to have the opportunity to speak on the issue.

There is plenty of information in the public domain to substantiate the very valid calls for increased supports to all those affected by the condition of dementia. We understand that Ireland’s population is ageing at a rapid rate. We also know that the prevalence and incidence of dementia rises significantly with age and dramatically so in those over 80. Some studies estimate that as little as 10% of people's symptoms are caused by dementia itself with the other 90% resulting from the quality of care people with dementia receive if in inappropriate settings. We know how a person’s physical condition often deteriorates when his or her mental state is in decline. The living space for people affected is therefore crucial.

If we are to support a person’s right to a high quality of life, the State must take into consideration a person’s right to autonomy and the individual’s sense of identity. International best practice recommends that dementia specific care should be domestic like and small scale with facilities catering for no more than about ten people. Unfortunately, many facilities across this State fail to comply with those principles. Often, as a result, the preferable option is to live at home with one’s family or relatives. We are told that Government policy supports this approach but how do the decisions on cuts to home help, housing adaptation grants and carers' supports echo that?

The cuts are hypocritical and counterproductive. The reality is that the consequences of those decisions have pushed families unwillingly into long-term residential care. This is wrong and must be reversed.

Our party’s alternative budget proposals for 2017 identified housing adaptation as a critical area for those with specific health needs. We committed to increasing the central funding of grant schemes by 50% through the allocation of an additional €15.75 million. This measure would particularly benefit people with dementia and their carers, and support the choice to remain living in their homes. We know from organisations such as the Alzheimer Society of Ireland that the outcomes of investing in home care services and supports will: meet the demand for care at home, allowing for greater flexibility to appropriately meet need and reverse cuts to home care services; reduce unnecessary hospital admissions and shorten the length of hospital stay for people with dementia; avoid inappropriate, unnecessary or premature admission into long-term residential care; and reduce carer stress and support family carers. Ultimately, it is in the State’s interest to support this type of long-term strategy, which invests in people being as self-sufficient and independent as possible should that be their choice.

As stated by Deputy Ó Caoláin, more emphasis on community-based care has the potential to reduce the number of older people requiring nursing home care, on which the State spends the bulk of its funding. Why can we not acknowledge those facts and proceed in a direction that supports those affected in a progressive and respectful way, which will benefit the State as well? The measure of our society is in how we treat our most vulnerable, and the choices we make to provide them with the deserved dignity. The lack of ring-fenced funding for dementia home care in budget 2017 is foolishly short-sighted and an absolute shame. We know that the majority of the 55,000 people affected by dementia prefer to live at home in familiar surroundings. This is a fact. They deserve that choice, and for that choice to be supported in a way that makes it a reality. Our party supports the call for adequate resources to ensure full implementation of the national dementia strategy and the development of a revised and reformed strategy that prioritises dementia.

To conclude, we are happy to support the motion and I commend Deputy Butler on bringing it forward. This area is often overlooked and it is important that we discuss it.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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People Before Profit welcomes the opportunity to discuss supports for people with dementia in the community and to draw attention to the urgent need for resources for them. I have first hand experience in this area as I worked in a hospital ward specifically for patients with dementia and Alzheimer's disease. The education and life experience I received there will always shape who I am. The cruelty of dementia is only mirrored by the sheer compassion and love for our loved ones in their final years. Lives that were so fruitful and full of happiness have been taken away by this cruel disease.

However, it beggars belief that Fianna Fáil has tabled this motion this week, after a budget that had, as one newspaper put it, "Fianna Fáil written all over it". Surely the time for Fianna Fáil to show its support for older people in general and people with dementia in particular was last week. Dementia is a condition which requires greater recognition and support, as its incidence is increasing with the increasing age of our population. It is good that more people are living to an older age, but with increasing age comes a need to plan better health and social care services. A study published this year by UCD researchers, the Alzheimer Society of Ireland and others, entitled "I'd Prefer to Stay at Home, But I Don't Have a Choice", reported that:

The present social care approach has not been resourced adequately to meet the actual needs of older people. The HSE are spending less now on home support services than they did in 2008, despite the increase in the numbers of people aged 85 and over and those living with complex conditions such as dementia. Older people cannot access safe, compassionate, individualised and quality care when they need it.

Home help and home care services were top of the list on budget day for support groups such as Age Action Ireland and the Alzheimer Society of Ireland.

The records of Fianna Fáil and Fine Gael Governments are equally appalling on this issue. During the years of austerity, cuts to services to pay off bankers' gambling debts Fianna Fáil attacked home help hours by reducing them from 12.63 million hours in 2008 to 11 million hours in 2011. Fine Gael and the Labour Party continued the austerity cuts and slashed home help hours to 9.74 million in 2013. In 2016, the number receiving all home care, that is, both home help hours and home care packages, has still not recovered to the 2008 level, despite the fact that the number of people aged over 65 years and over 85 years has continued to rise.

In 2016, only 63,000 people were receiving home care compared to 64,000 in 2008. Meanwhile the population aged over 65 years has increased by 30%, from 481,00 in 2008 to 624,000 in 2016. As Age Action stated in its budget submission:

Between 2008 and 2012, the number of people receiving home care services (home help and home care packages) fell by nearly 30 per cent (17,138 people). There has been a nearly 30 per cent increase in the population aged 65 and over between 2008 and 2016. ... The evidence clearly points to the needs of many older people going unmet.

The increasing use of for-profit agencies has meant worse conditions for staff and a system of speeded up care which allocates insufficient time for even personal care. It leaves much domestic care undone and dependent on relatives and friends who are often elderly and in poor health themselves.

Clearly, Fianna Fáil and Fine Gael stand condemned for targeting the older population with cuts in services and welfare to bail out the rich bankers and developers, who play the tune to which they dance. AAA-PBP would be happy to support a motion proposing to increase the funding of home care, hire more social workers and social care workers, provide home care on a demand-led and needs basis in every area, increase the pension without delay, abolish prescription charges, water charges and property tax, improve the household benefits package or any of a host of other measures that would improve the lives of older people and people with dementia. This motion makes no such practical proposals and hides and denies the responsibility of previous Fianna Fáil and Fine Gael Governments, as well as the current Fianna Fáil-Fine Gael coalition. This failure and denial of responsibility by those parties should also be noted.

Maureen O'Sullivan (Dublin Central, Independent)
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I was struck by the headline on an article about Alzheimer's disease and dementia which stated, "Dementia tsunami looms". However, the figures are startling and they justify the use of the word "tsunami". An increase of 240% is forecast in the number of people who will present with either dementia or Alzheimer's disease. We are aware of the figures from the 2012 research in the review undertaken by Trinity College and National University of Ireland, NUI, Galway in preparation for the national strategy. Those figures quoted 42,000 people living with dementia. However, in 2014, the Department of Health revised that upwards to 50,000. It was startling that 8% of those were under 65 years of age. The word "tsunami" is justified.

We are aware of the national dementia strategy and its priority areas. A very important area is timely diagnosis, but that requires general practitioner, GP, training and education. There are also the areas of intensive home care packages, integrated services, research, and public awareness and understanding. I looked at the 2015 first national survey on the provision for people with dementia in long-time care. There was a good response from the nursing homes - 469 from a sample of 602. There were positives in it regarding the therapeutic services, such as music, art, sensory rooms and gardening, but it is disappointing that these were not available everywhere. One can see in that survey the discrepancy between the public and private sectors. In the HSE-operated facilities, only one third of the staff and care attendants were specially trained, whereas in the private establishments all of the staff and care attendants had specialist training. In addition, the privately operated facilities were more likely to offer individual bedrooms. The most serious concern related to the number of specialist care units at only 11%. There is a need for strong political leadership and commitment to address those issues.

I recall the film Still Alicewhich was released a couple of years ago.

It gave a very powerful view of the onset of dementia and Alzheimer's disease and how terrifying it is for the person experiencing that loss of memory, finding themselves in places without knowing how they got there, forgetting how to eat, forgetting to dress and the loss of words and the ability to express how they feel. It is a very lonely and dangerous place. There is also the challenge for those who love them because we know that caring can be a 24-hour activity. It has been said that 25% of carers are elderly and many of them experience financial strain. I know from family and friends how caring for somebody with Alzheimer's disease can be overwhelming at times.

Some people take refuge in denial or in hiding or camouflaging it. One of the most impressive and moving presentations I attended was one organised by Dementia Ireland and the Alzheimer Society of Ireland where a lady in her early 50s spoke about the early onset of Alzheimer's disease and the way in which she was managing to deal with the illness. I also want to acknowledge the support that is given to carers and loved ones by the Alzheimer Café events. I have been to two of them, one at the Clareville centre in Glasnevin and the other in Cabra. I hope we get a new primary care centre in Dublin 1 and that there will be a space for that type of café for people. We must try to get away from being embarrassed about or ashamed or fearful of people with dementia because compassion, empathy and inclusiveness are what they need. All too often, some of them feel that they are better off staying at home or their relatives want them to stay at home but staying at home just leads to depression.

We know there is no cure at this stage but we know that diet, exercise, meditation, mindfulness, social inclusion and involvement and, above all, public awareness all help. I read an article by a woman with early-onset dementia in which she wrote that her mind is slowly dying but that, in the meantime, she is living her life one day at a time.

Thomas Pringle (Donegal, Independent)
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A strange anomaly is occurring in funding for home help packages. Funding for home care packages for people with dementia fell by €11 million in the four years up to 2015 while nursing home care investment rose by €84 million. Simultaneously, we saw the number of home-help hours being significantly reduced. Furthermore, according to Age Action, in 2013, out of a total budget of €1.39 billion, 72% was spent on the nursing homes support scheme, which supports over 22,000 elderly people - approximately 4% of the population aged 65 and over - while only 14% of this was spent on home-help services with 9% spent on home care packages.

Age Action has noted an overall trend in the admissions policies of nursing homes, which have increased the number of low to medium-dependency people being admitted while lowering the number of high-dependency residents. This is placing the greater burden of dealing with high-dependency people on community and public facilities. We are always treated to nursing home providers' complaints about the cost of care in the community sector but this is mainly because it has higher-dependency patients. According to a report compiled by the Alzheimer Society of Ireland, Age Action and a number of other groups, more than half of older people could remain in their own homes instead going into long-term care if more home-support services were available. That same report also confirms that multiples of resources are being invested in long-term care instead of community-based care despite the fact that Government policy is supposedly to support people to remain at home. As it stands, Ireland places 35% more of its senior population in institutional care than the EU average. This is proof that the Government is pushing towards the privatisation model of care and allowing nursing homes to dominate the sector. I am happy to say that Donegal has the highest number of elderly people being cared for at home in the country. I think this is due to how well our community hospitals are connected with Letterkenny University Hospital and how elderly patients are transitioned out of community hospitals and prepared to go back home again. It is also due to the fact that families want to care for elderly parents, aunts and uncles at home for as long as possible. However, we are not making it any easier for them. There seems to be an attitude within the health service that because someone has dementia, he or she may not be as important as somebody with normal mental capacity. We see treatment delayed and GPs not responding to people with dementia. These families save the State hundreds of millions of euro every year by keeping their loved ones at home in the surroundings with which they are familiar, going all out to care for them and organising their entire lives around looking after their elderly loved ones. However, they do not get the support they deserve from the HSE and the health service. There should be a recognition that supporting people at home saves the State money in the long term.

In respect of people with intellectual disabilities, I know of one woman with an intellectual disability who lives in supported community housing and who has early-onset dementia at 47 years of age. The HSE is trying to move that person into a nursing home away from surroundings in which she has lived for over 20 years and a community in which she has been supported. The HSE wants to get her into the nursing homes support scheme and out of intellectual disabilities care because she has early-onset dementia. This will do nothing for her quality of life. This is the core of it. We must recognise that people with dementia are every bit as valuable as everybody else in their communities and that they and their families need to be supported to keep them in the settings in which they are most comfortable and with which they are most familiar, thus saving the State money. It is hard to believe that this Government, which has been so obsessed with saving peanuts in many cases over the years, does not see the value of keeping people at home and the savings to which this can give rise. Perhaps that has something to do with the privatised model of nursing home care we have in this country.

Michael Harty (Clare, Independent)
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I am sharing time with Deputy Mattie McGrath. I thank the Leas-Cheann Comhairle for giving me the opportunity to contribute to this debate. I congratulate Fianna Fáil and Deputy Mary Butler on introducing this topic for discussion. I know the Minister of State is well aware of the topic and is extremely interested in it. I know it is a topic that will probably not be contested and all the better because what is in the motion is very sensible.

Dementia is the most common degenerative disease of the central nervous system. Due to our ageing population, it is going to be an ever-increasing burden on our health service. I think we are all aware of this and we all realise the challenge this will pose for us. As it is structured, the health service is probably ill equipped to deal with the problem. Diagnosis can be difficult. Dementia becomes apparent over time but the changes can be very subtle and can be quite similar to symptoms of depression. Gradually, it becomes apparent that it is a disease of most recent event memory loss. People with dementia can remember their childhood but, unfortunately, they cannot remember what they did yesterday or even in recent times. It can be a difficult diagnosis to make but it becomes apparent eventually.

Unfortunately, medication currently available does not alter the progression of the disease. It may control the speed of progression but it does not alter the disease process. Much of the medication we use involves controlling symptoms rather than the disease. There needs to be far more research into the causes of dementia, prevention and delaying progression. For the moment, the health service is tasked with dealing with the problem as it is. Dementia puts huge pressure on the patient and his or her family and carers. These are patients who have lived very productive lives. They have raised families and worked hard all their lives and now they are struck with this devastating disease, which may be a prolonged illness and last for many years. It robs them of their older years when they can enjoy their family and grandchildren, which is devastating for them.

It is very important that people with dementia are managed within their own homes. This is where the emphasis should be. Many families are able to cope with relatives suffering with dementia and keep them at home in familiar surroundings.

This is the most important thing. Many do it without assistance. Sooner or later, unfortunately, they will require greater care, which should be delivered in the home by carers and the Alzheimer Society of Ireland, which provides excellent home care for patients.

We also need to develop non-residential day centres where patients can go for themselves in order that they can have social interventions, which are probably more important than medical interventions. Many day care centres provide dementia-specific care, giving patients an intellectual outlet. They can engage in art, music, group therapy and reminiscence therapy. Reminiscence therapy is very important for people with dementia. There are many strategies which can be introduced which do not require residential care.

Unfortunately, sooner or later, people may reach the stage where they require residential care, and this may be accommodated within our standard nursing home structure. Many of our nursing homes go out of their way to look after patients with dementia within the common care of a nursing home. Unfortunately, some people develop serious behavioural problems and require nursing care in specialist dementia units. These are being developed throughout the country and it is very important that the Government supports these structures.

Mattie McGrath (Tipperary, Independent)
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I am delighted to speak on the motion and I compliment Deputy Mary Butler and Fianna Fáil on tabling it. It is good that we are having a reasoned and calm debate on the issue. I hope the Government will not oppose the motion, given that we should all aspire to it. Everyone here knows people or has family members who are afflicted by this very serious illness, as Deputy Michael Harty said. The slowness and the difficulties in diagnosing it makes it very difficult for loved ones, children, relatives and siblings, and it is very challenging. We need more day centres and specific nursing homes to deal with this very troublesome and difficult diagnosis when it arrives and when it progresses.

Family carers must be supported and complimented. There has never been an audit of the monetary value of the savings to the HSE that result from the care which loved ones and families give in their homes. It is very difficult for ordinary people to understand why it is so difficult to get home care packages, extra home help hours and support for carers. No matter what the illness, family care at home is better for patients. They are healthier and happier and have peace of mind in the knowledge and comfort that they are cared for in their homes. I salute the carers.

I also salute some of the district hospitals, St. Patrick's in Cashel and St. Anthony's in Clonmel and the hospitals in Clogheen and Carrick-on-Suir which do tremendous work. They are small and efficient. There is no big bureaucracy. Very intimate caring and minding is delivered to the patients and there is great interaction with the families. The HSE is slow and unable to value and appreciate the efforts, time and energy spent by family members trying to care for people in these areas. I am tired of saying this; I am like a bad record. All they want is a little support and to be left alone to do it and not to be intruded on but supported. This is where the carers in their homes are invaluable. While the cost of it should not be in monetary terms, they save a lot of time and bed space in hospital wards. When a diagnosis is made and people know what it is, they do not need to be traumatised further by being brought here and there and moved to different settings. For people with dementia, it can be very troubling to be in strange surroundings.

We must all support and welcome the motion and welcome the debate to get a shift at senior managerial level in the HSE. Although the budget allocated extra money for home care packages, getting it delivered is like pulling teeth. It has to get down to the areas and be divvied up. The difficulty in getting applications in and getting the return is not acceptable. It is shameful that families have to go through such trouble and trauma when they are trying to do the caring as well. The applications should be simplified and made more user-friendly. I appeal to the Minister of State, as the one mark she will leave on the Department and the HSE, to try to get a bit of humanity into the applications and how they are dealt with, and to speed them up and reduce the form filling, red tape and unwillingness - despite that there are many people working hard in the HSE - to get through the hoops and measures. It must be tackled. I appeal to the Minister of State to do so. I support the motion.

Séamus Healy (Tipperary, Workers and Unemployed Action Group)
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I welcome the debate. I appeal to the Minister of State and the HSE to continue the funding of the five steps to living well with dementia project in south Tipperary. In 2012, south Tipperary received funding to develop a new and innovative dementia project for a three-year period. The project was jointly funded by Atlantic Philanthropies and the HSE through the Genio trust. It is time to put the funding for the project and services on a permanent basis. A core principle of the project and the services in south Tipperary is to provide flexible, person-centred care in the home and allow people to remain at home for as long as possible. The project has been a great success. It has already transformed the life experience of many people with dementia and their families in south Tipperary and is an ideal template for the national dementia strategy. Crucially, the development of the services included dementia sufferers, their carers, the Alzheimer Society of Ireland, the Carers Association, Muintir na Tíre, the South Tipperary Community and Voluntary Forum, GPs and representatives of the HSE. I acknowledge the vital input of people such as Dr. Caitríona Crowe, consultant in the psychiatry of old age, and Professor Eamon O'Shea of NUI Galway.

It is a five step programme, the key elements of which include a media campaign. The campaign was to raise awareness among the public about dementia, dispel myths and reduce stigma. There was buy-in to the programme by all the local media such as local radio stations, including Tipp FM, Tipp Mid West Radio and the print media. A community connector was appointed to liaise with organisations across the county and raise awareness in general about dementia and in particular about the services and supports available. Volunteers were largely provided by the Carers Association.

The single most important element of the programme was establishing a single point of contact to ensure people could access the information, supports and services they needed. The appointment of dementia support workers was also important. These people support people with dementia in their homes and ensure they can live at home for as long as possible and delay the need for long-term care. A further development at South Tipperary General Hospital is the memory technology library which provides a large range of assistive technology products to support people with memory loss. The programme in south Tipperary has been significant and successful and I compliment all those involved. I again ask the Minister of State to put permanent funding in place to continue it.

Róisín Shortall (Dublin North West, Social Democrats)
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I welcome the tabling of the motion by Deputy Mary Butler and her colleagues.

Its most important aspect is that it puts a focus, at least for a short while, on the major challenge that dementia poses for the country. Due to the incredible demographic changes facing us, we have no choice but to be proactive in putting in place the kinds of service that are required currently and will undoubtedly be required in future. Not enough was done in the recent budget in this regard. Those parties that were involved in putting the budget in place must take responsibility for that. Choices were made on how limited resources would be spent. At a time when there is a need for public services to be repaired and such glaring shortages in services, particularly in health and in light of the housing crisis, it seems like a bad decision to support a proposal to give €335 million back to some of the better-off people in society by way of cuts to the USC.

The damage done throughout the recession and by the austerity measures that were imposed have wreaked havoc on many public services. The priority should have been to repair that damage and ensure that our public services were returned to a reasonable standard and equipped to deal with the demands that would be placed upon them in future. Nowhere is this more noticeable than in the health service, given the demographics with which we are dealing. There is a significant additional demand for services, but the budget will go nowhere near meeting it.

It has been suggested that some 55,000 people suffer dementia. We are unsure, as there is an absence of reliable data. If one accepts this figure, which has been cited by some of the NGOs working in the area, it is set to treble in the next 30 years. Of those nearly 160,000 people, at least half will be over 85 years of age. This poses considerable challenges for our health and community services. We must start being serious about preparing for this eventuality.

Dementia is associated with the increased use of medical services. Cognitive impairment and confusion are significant co-morbidities for many older people. A significant number of people who are occupying hospital beds have some element of dementia, although it may not be the initial reason for their being in hospital beds. This figure has been placed at approximately 25% of the hospital population. Being in hospital results in a decline in the person's condition, so we should not be placing these people there. Rather, the emphasis should be on community care. Older people want to remain in their own homes and communities. We should facilitate this instead of maintaining a situation in which people have a statutory entitlement to nursing home care but no similar entitlement to home care packages. This is what we must do. It makes sense, achieves better health outcomes and provides better value for money. We need a greater emphasis on home-care packages, as the budget's provision will only meet half of the demand. For this reason, 17 NGOs joined together recently to demand additional investment in home-care packages.

The involvement of Atlantic Philanthropies in the funding of this strategy has been welcomed, but why is it involved? Is it appropriate that we must depend on philanthropy in order to provide basic health services for older people? Surely this is not a defensible position. It should not be the case that our taxpayers' money is being used for other purposes instead of for meeting the most glaring need in our community. We should move away from relying on philanthropies and instead use our own tax resources to fund the essential services that are required by people with dementia.

Marcella Corcoran Kennedy (Offaly, Fine Gael)
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It is clear from the contributions made on all sides of the House that everyone wants to do the best possible for those with dementia and that there is substantial agreement on what is required to give them the best quality of life.

Only a few short years ago, dementia was hardly understood at all. While matters have improved, we are still well short of where we want to be. The key message is that people who have developed dementia are still the people they always were. They worry, laugh, get angry and sad, and they feel lonely and happy just as they always did. They also continue to enrich our lives and help those around them.

This motion is substantially in line with what the Government has committed to do. Those with dementia must be included within our communities and supported to remain as valued members of same. It is where they belong and where they want to be.

I am hopeful that, before too long, the many strands of medical research that are under way will allow more decisive medical intervention in the course of this condition, but we are not there yet. That said, evidence is increasingly indicating that lifestyle choices over many years can have an effect on the likelihood of dementia occurring, and perhaps even more on the age at which it occurs. Diet, physical and mental activity and social connectedness all seem to act alongside genetics in influencing what happens. It is critical that we get this message to those who may be concerned. This is being addressed as part of the Irish national dementia strategy and the wider health promotion efforts under the Healthy Ireland initiative.

The national dementia strategy was based on extensive consultation and significantly shaped by advice received from health professionals, advocacy groups and academics. It seeks to draw together the elements of support that matter most to those with dementia and those who live with and care for them. These range from the role of the general practitioner, GP, which is often the first point of contact with the health system for a concerned person, to advice and case management, more specialist diagnosis, home care, awareness raising and, finally, acute and palliative care. Inevitably, this includes a large number of services and, unfortunately, we cannot do everything immediately. In collaboration with Atlantic Philanthropies, however, we are carefully prioritising what to do first and will continue to spread the net wider as we move further through implementation.

A significant benefit of the strategy is the establishment within the HSE of a national dementia office, which is charged with the ongoing prioritisation of issues and services relevant to those with dementia. This office can bring a much clearer focus to these issues and facilitate the framing of a more effective case for additional resources for dementia in future.

I thank Deputies for contributing on this motion. The Minister of State, Deputy McEntee, is looking forward to working with colleagues from across the House to develop and strengthen the supports that are provided to those with dementia over the coming months and years.

Pat Gallagher (Donegal, Fianna Fail)
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Deputy Browne should have spoken before the Minister of State, so is it agreed that he should take her time slot? Agreed.

James Browne (Wexford, Fianna Fail)
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I congratulate my colleagues on this motion, which is a significant step forward in raising awareness of this disease among people, in particular among those who may not be touched by it, so that they can be informed of the situation. It is important that we make a big deal out of this. Alzheimer's disease and other forms of dementia, such as frontotemporal, vascular, mixed, Lewy Body and so on, will eventually touch everyone, particularly as our society grows older.

In some ways we are probably in the calm before the storm, and as our population ages and our life expectancy increases, we will experience more issues related to dementia. We can predict their demographic growth and within reason we can predict the general growth of these dementia-related diseases. This motion is timely in bringing attention to the issue so the HSE can start preparing for the inevitable increase in dementia-related illness in this country. I hope we are not without hope, however, and I know that with the increasing mind mapping that is ongoing, there may eventually be a breakthrough in this area.

Those currently suffering from dementia are going through a quiet crisis whose impact is colossal but often barely acknowledged. We know that in families with a member suffering from dementia, it steals lives and breaks hearts. Every day throughout Ireland, families go through a kind of slow and aching pain. It is a disease that slowly robs people of their freedom of personality but it is important they are not deprived of their dignity. That is why we need supports for families and individuals. Even as a person's memories slowly leave, his or her character and personality will remain. It is very important these people and their families are given the necessary supports. There are more than 55,000 people living with dementia in this country, with 165,000 people directly affected and even more people indirectly affected. We know from the mentioned statistics that the incidence of these illnesses will double in the next 20 years and treble in 35 years. They are also a significant cause of death.

In my time today I will highlight a very narrow and particular type of issue, early onset dementia. I am not even talking about traditional early onset dementia, which might affect those aged between 55 and 65, but rather the type affecting young parents. It might be quite rare but it exists and has a devastating effect on people's families. If a young parent suffers from this type of dementia, the husband or wife will have to watch him or her go through dementia when they are in their 20s, 30s or 40s. If the children are young, the spouse taking care of the affected husband or wife must explain to the children what is happening to their mother or father, while also having to maintain employment so the mortgage will be paid. It is a particular sense of suffering and agony that those families must go through. In those circumstances, very often the sufferer's parents are alive as well and they must watch their child, a young parent, go through dementia.

This can cause all sorts of tensions. In particular, a caring partner may find it very difficult to get access to the support he or she needs. The sufferer would not be over 65 so he or she would not meet the relevant support criteria. Almost anywhere they go, the people will be told they do not fit into this or that box. They might work or have a half-decent income, so they may not be entitled to any support. These people are not old enough for old-age care. The fair deal scheme might be suitable for an older person not taking care of children or having to pay a mortgage but for a husband or wife in their 30s or 40s trying to pay a mortgage, it is not suitable.

Very often, when dementia becomes very serious, the only option is to bring a husband or wife to the accident and emergency department and leave him or her there. That is a horrendous position. I am certainly not taking the Minister of State to task about this, but I am trying to highlight the issue, as it is something that could probably be resolved with just a little bit of thought and application. Some tweaks are just needed here and there and it is not something that needs to be costly. It is just about making a few exceptions when somebody is a young mother or father. They would be under 65 and have a child, with a mortgage to be paid and a job to be kept. I ask the Minister to look at this issue and provide supports for husbands or wives in such a position. This concerns a tiny subset of people but it has a devastating effect when a husband or wife has to watch a partner lose memories and the ability to look after themselves or a child. They have to explain this and deal with the mental impact on children. It also affects a sufferer's parents and extended family. It is an extremely serious issue that has a debilitating effect on families.

I give great praise to all the families and support groups which deal with dementia sufferers. They are soldiers in dealing with these issues but I just wanted to highlight this narrow matter.

Pat Gallagher (Donegal, Fianna Fail)
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There are three minutes remaining for Deputy Brassil in this slot. There will also be a final slot.

John Brassil (Kerry, Fianna Fail)
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I welcome the opportunity to speak on this topic, albeit for a few minutes. The increased prevalence of dementia and particularly Alzheimer's disease means that as a society we must increase our knowledge and ability to deal with these conditions. Unfortunately, my father-in-law suffers from dementia and I am very aware of the demands on families and the people affected on a daily basis trying to deal with this very debilitating illness. On the other side, it should not mean a person cannot have a quality of life. It is our responsibility as a society to try to come up with the right care packages and supports to allow families dealing with family members suffering from dementia and particularly Alzheimer's disease to have a decent quality of life.

My father-in-law at the onset of his condition was put on a clinical trial. The drug used is nifedipine, which was previously used to treat blood pressure problems. The positive impact of that drug was significant and I hope it will be something seen as a breakthrough treatment for Alzheimer's disease. We may never find a cure but there is a possibility that we will find something that will slow the progression of the disease. Certainly in the case of my father-in-law, he has had a significant improvement in his quality of life because he has been on this drug for the past three or four years. I look forward to advances in that area.

I commend my colleagues, Deputies Mary Butler and James Browne, on bringing forward this topic. I look forward to us as a society learning more and dealing better with what is a debilitating disease. Ultimately, it is our responsibility to ensure a quality of life for those who are affected.

Pat Gallagher (Donegal, Fianna Fail)
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I am advised by Deputy Mary Butler that she has nominated Deputies Eugene Murphy and Kevin O'Keeffe to speak for three minutes and two minutes, respectively. She will take the remaining five minutes in the final slot.

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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This special debate has been brought about by my colleague, Deputy Mary Butler, and it has probably been one of the most moving debates in which I have participated since becoming a Member of this Dáil back in late February. I compliment Deputy Butler on the way she made her case earlier, supported by our health spokesperson, Deputy Billy Kelleher.

I thank the Minister of State, Deputy McEntee, for her response to the motion. I am sure the Ministers of State who are in the Chamber now, Deputies O'Donovan and Corcoran Kennedy, take the same view as their colleague. We are all touched by this issue in some way or another. I was glad Deputy Ó Caoláin mentioned the Alzheimer Society of Ireland, which does extraordinary work throughout the country and is a wonderful advocate for families of people suffering from dementia and Alzheimer's disease. This issue impacts on so many lives, not just those affected by these conditions but also the loved ones who care for them on a daily basis. Speaking to those who care for people with Alzheimer's disease, one often finds they are broken-hearted by their loved one's condition.

A 2012 survey showed that local health office areas in the HSE west region have the highest prevalence rates for these conditions, with each of the nine areas estimated to have at least 1% of its population living with dementia. My own county of Roscommon has the highest share of people with dementia, at 1.4%. The lowest rate, meanwhile, is in west Dublin. There are 55,000 people in Ireland living with dementia and a further 165,000 directly affected by it. It is expected that one in three people aged over 65 years in this country will develop dementia and that the number living with the condition will double in the next 20 years and treble in the next 35 years.

Fianna Fáil wants to see progressive increases in the investment in home-care supports for people with dementia in the coming years in order to meet the needs of persons in the community living with the disease. We need flexible health and social care services based on individual needs. Some 63% of people with dementia live at home. Most people with the condition want to be cared for at home and that is also the wish of their families. It is important that we all give this matter our full attention. How to deal with the needs of people with dementia is one of the fastest-growing problems for the health service. As a society, we must prepare for the implications of an ageing population. That means resourcing services, supporting carers and investing in research.

Kevin O'Keeffe (Cork East, Fianna Fail)
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I thank my colleague, Deputy Mary Butler, for bringing forward this motion. I also thank the Minister of State, Deputy McEntee, for her positive response and for her Department's endeavours to progress supports and provide further funding for this area. Dementia has impacted my own family, with my mother suffering from the condition. It is important that we try to keep people at home; I see myself how beneficial that is to the person with dementia. We must increase the provision of home-care packages and fast-track the various schemes.

Great work is being done in this area by the voluntary sector. Colleagues referred to the Alzheimer Society of Ireland. I often attend its coffee mornings and see the great support it receives from the public. However, it cannot all come down to voluntary support - we in the Oireachtas must ensure there is adequate State provision for people with dementia. Several speakers noted that the incidence of dementia is increasing. I am aware of several people in my own area with the condition. I read a newspaper article yesterday in which an actor from one of the soap operas spoke about his mother's struggle with dementia. He pointed out that he can afford to keep her at home but there are people who simply do not have the resources to provide home care for their loved ones. I hope the Government will commit to making progress on this issue.

Mary Butler (Waterford, Fianna Fail)
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This is my first opportunity as a Deputy to bring a motion before the House. I agree with my colleague, Deputy Kelleher, that it is a non-contentious proposal, and with Deputy Harty that it also is a sensible one. I am delighted it has attracted such a high level of cross-party support. A small number of Members have chosen not to support it, which is their choice.

I thank the Minister of State, Deputy McEntee, for her comprehensive response. She explained that 500 people with dementia and their families are expected to benefit from the intensive home-care packages over the lifetime of the implementation programme, which is due to expire at the end of 2017. I was concerned about the expiration date and how we might move forward from there, but the Minister of State explained this was only the beginning and it will move on from there. That is most welcome. I thank the Government for supporting this important motion. I take the opportunity, too, to thank Deputy Ó Caoláin and his colleagues in Sinn Féin for their support for the motion. The Deputy referred to the housing adaptation scheme, which is very important to people living at home. I also recognise the work of Senator Colette Kelleher, whose office is close to mine and with whom I worked closely on this motion.

As a society, we must prepare for the implications of an ageing population. I welcome the fact that in the United States, the Democratic Party nominee for President, Hillary Clinton, has committed, if elected, to finding a cure for Alzheimer's disease by 2025. Ireland has some of the world's best geneticists and neurobiologists and we can and must play our part in trying to find a cure.

I acknowledge the work of the Alzheimer Society of Ireland in supporting people throughout the country who are living with dementia. I am honoured to be chairing a cross-party committee on dementia. My focus in this motion and in my work on the committee is to raise awareness of dementia. That is the most important thing we can do. I welcome the Alzheimer Society of Ireland's vision that nobody should go through dementia alone. Dementia-friendly communities provide an opportunity to demystify dementia so that it is no longer perceived as something to be feared. These communities demonstrate a high level of public awareness and understanding of dementia. In Ireland, such communities are found in Galway, Donegal, Mallow and Wicklow, to name but a few.

Experts in the field have pointed out that with the right information and supports, people can live well with dementia and there need not be a stigma attached to it. Community-based dementia advisers offer a critical early intervention for those living with the condition and help to promote dementia awareness within communities. Since the middle of 2014, the Alzheimer Society of Ireland has funded seven dementia advisers who cover specific parts of the country. It is nowhere near enough but it is a start. If that initiative could be rolled out throughout the country to build a comprehensive dementia advisers network, it would be an important development.

I thank colleagues for their support for the motion. The most important point I want to make is that we must provide the best possible quality of care for people with dementia and the best possible quality of life, preferably in their own home. That is what we are trying to achieve.