Susan O'Keeffe (Labour) | Oireachtas source

I move:

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

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

further calls on the Government to ensure that:

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

I welcome the Minister of State and appreciate that he is present on behalf of the Minister of State, Deputy Kathleen Lynch. I also welcome those in the Visitors' Gallery and the many people who have shown a considerable interest in the important issues of dementia and Alzheimer's disease.

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

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

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

If we consider that we have 42,000 people already struggling with dementia and best estimates suggest that the number will have risen to approximately 140,000 within a mere 30 years, it is clear that a national dementia strategy is an urgent requirement.

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

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

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

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

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

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

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

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

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

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

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

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