I am the chief executive officer of the Alzheimer Society of Ireland. I am accompanied by Ms Sarah O'Callaghan, head of public affairs and communications, and Mr. Pat Doherty, head of services.
On behalf the Alzheimer Society of Ireland and families I thank the Chairman and members of the committee for the opportunity to speak to the committee about dementia care in Ireland and the hidden health crisis of people with dementia and their carers. Dementia is a major public health issue with massive, social, political and economic implications. Regardless of its impact, it is a new area of policy focus that has inadequate funding and planning. As a result, there is no clear care pathways for dementia. Many families leave after diagnosis with little or no idea of what it is that is before them and many have nowhere to go to get information about what is available.
There are enormous gaps in dementia services. There is no clarity on how much is spent on dementia-specific care and on overdependent on undersupported family carers. Notwithstanding the pressures of the current economic climate, the Alzheimer Society of Ireland is acutely aware of the increased numbers of people affected by dementia, their growing health and social care needs and the cost to the State if these needs are not addressed. Many families are living in quiet desperation in a shadow reality with no service and no voice to be heard. We are struggling to cope with funding restraints and huge demand for our services nationwide but it is not enough.
Alzheimer's disease and other forms of dementia affect people in every community in Ireland. There are 44,000 people living with dementia today, with 50,000 carers and 132,000 family members also impacted. Demographic trends indicate that the numbers of Irish people affected by the condition is expected to soar to 104,000 by 2036. The impact of dementia is life-changing for the person and the family carer, affecting their physical, emotional and psychological well-being. Because of the multiplier effect, carers are often called the hidden patient.
Dementia affects people in different ways. Typically the person experiences gradual progressive deterioration in brain function, including decline in memory, reasoning, communication skills and the ability to complete daily living tasks. Over time the person becomes increasingly dependent on his or her carer and on dementia services.
Receiving a diagnosis of dementia does not change a person's desire to live at home for as long as possible and community-based models of care can be both effective and efficient in facilitating this, provided there are adequate levels of carer interventions to increasingly assist the family carer as his or her loved one's dependency increases.
The recent "Prime Time Investigates" programme showed only too clearly the impact dementia can have on family carers witnessing the changes it brings to their loved one's personality, well-being and ability to recognise those close to them. It goes beyond heartbreak for family carers, causing anticipatory bereavement and sometimes despair but, on the other hand, their overwhelming love for their family members gives the carer tremendous strength and resilience. In many cases the first we know about people in crisis is when the carer presents in the acute hospital setting. It is then too late for the carer who is burned out and ill and it is too late for the person with dementia to continue living a relatively healthy life at home.
Carers want to care and in doing so provide significant savings to the State. However, they are struggling to cope because most find that the current health and social care system is fragmented, inflexible and inequitable. Initially, the person and his or her carer have to struggle with the recognition of the early insidious dementia symptoms and seek medical assistance. Given the low levels of public understanding and dementia-related stigma, this recognition is often delayed because people do not know the signs or they are too afraid to seek help. The experience of accessing the diagnosis can vary from person to person, often based on geographical location or individual professions involved. For some it can be a swift and supported process but we know that all too often it is not. Many people are waiting up to four years for their diagnosis, by which time the person's condition has already progressed. This timeframe compares badly to nine months in Germany and 13 months in Italy.
All too often the diagnosis is given without information, training or back-up, with no support details provided, not even the Alzheimer helpline number. There are little or no community support services available to assist the person and the carer to live at home. Often they become isolated within their homes, away from community living. Many carers must significantly reduce work or stop working to care as the condition progresses. As the journey continues, families tell us of their difficulties navigating a health and social care system that is disjointed, overstretched and overly medicalised, where the person with dementia is not always valued and responded to individually. Carers can feel they have no voice yet must be the voice for two people.
Acute care settings could not be more dementia unfriendly. We often hear that "the person in bed No. 10 is troublesome". When long-term care is required for loved ones, there are not enough dementia-specific residential services, and these are usually not inclusive of the needs of carers. From the points of diagnosis through community living to palliative care, there is a constant struggle for the carer. For a person, the system is far too often only concerned with medical needs and is not cognisant of social, spiritual and emotional requirements. Many families tell us the Alzheimer Society of Ireland is their lifeline in hope, help and understanding. Our meagre service offering four hours of home care and two days of day care per week is the difference between being able to care and cope at home as against not being able to care at all. Those families do not know what they will do if this lifeline is taken away.
For 28 years the Alzheimer Society of Ireland has been working at the heart of local communities supporting tens of thousands of families in living at home, where they want to be. Founded by two family carers, today our national network of services, such as day care, home care, respite and carer support groups, provides social and therapeutic interventions for the person with dementia. At the same time the services provide care with vital supports and respite. For example, our social clubs strive to preserve the friendships, social connections and couplehood between the person with dementia and a carer. This is with the goal of ensuring they stay together for longer. Our tele-care project provides assistive technology for use in the home.
Volunteerism continues to be central to our work in fundraising and awareness activities. We have 500 trained volunteers working hand in hand with staff to enhance our professionally led services. Without this dedicated army of volunteers and staff, the Alzheimer Society of Ireland could not continue to provide current levels of services to our 2,100 service users. Constrained in our reach, users of the Alzheimer Society of Ireland's home care services receive an average of only four hours per week, while users of our day care receive two days per week. Services are largely full and at capacity, with waiting lists having grown by 33% this year to more than 1,000 families.
Calls to our national helpline have increased by 21%, with people desperately needing information and details of dementia services. These are all clear indicators that more people than ever before need help that is just not currently available. With an over-reliance on carers in Ireland, the risk of care-giver burn-out is significant and represents an immediate threat to the balance of care for people with dementia. When burn-out occurs, crisis hits. Often the family carer requires care and attention so the loved one can be prematurely admitted to long-term care, as there is no other option available. Ultimately, the cost to the State is a multiple of what the early interventions would have been, and the human cost to the person with dementia and the family carer is incalculable.
There is little doubt that there is a hidden crisis that is growing and will not go away. It needs attention now to meet the needs of people today but also to plan for the increased numbers of people that will be affected by the disease. The Alzheimer Society of Ireland recognises that the 2011 budget will be particularly difficult, affecting everybody and everything. The economic and human cost of ignoring this major and emerging challenge of a carer crisis will have significantly higher costs.
Where do we go from here and how do we improve the living experience of people with dementia and their carers on a daily basis? The next steps are clear. International research shows that carer support is central to achieving effectiveness in dementia care. Carers who can access home relief, day care relief and other community services can keep loved ones at home for longer. This is not only their preferred option but it also helps to lower health care costs and reduce the need for long-term beds. Therefore we desperately need to protect current limited dementia services in the community and extend the basic level of care to families currently in desperate need. We ask the members of this committee to use its influence on the Minister for Health and Children and the HSE to prioritise the existing community services and to clear current waiting lists to avoid carer burn-out. We must ensure that these families can continue to care for loved ones at home.
Strategically, we must build on the experience of other nations such as England, Scotland, Norway and Australia by designating dementia as a national health priority. We need accelerated development of a national dementia strategy with an implementation plan to address the current policy, planning and service gaps so that we can ensure a better quality of life for people with dementia and carers. This is so they can access diagnosis and interventions in a timely fashion, and can have choices in care options open to them while feeling like valued and active citizens.
We welcome the recent announcement from the Department of Health and Children on the commencement of development of a national dementia strategy. However, we urge the committee to give a unanimous endorsement of our call that this strategy and implementation plan be completed by the end of 2013. We ask that the committee make a resolution in this regard.
We cannot solve our economic crisis with a simple approach to cutting budgets without counting the cost to society at large. The basic survival of families coping with caring for their loved ones with dementia must mean something to us as a civilised society. A little help would mean so much; we are only talking about four hours per week. We have to appeal to the morality of providing support to those carers who are being so responsible, so loving and who are yet so scared. We cannot consign thousands of people to illness and isolation because of a lack of money. That is the beginning of an unjust society.
I thank the Chairman and members for their attention and I look forward to their questions. Ms Sarah O'Callaghan, head of public affairs and communications, and Mr. Pat Doherty, head of services, will help me to address them.