Professor Eamon O'Shea:

I will start by providing a national perspective as a lead-in to Dr. Crowe who will talk about the South Tipperary Dementia Pilot Project, including some current ideas and realities about dementia.

Dementia is an ageing problem and there is still a great stigma attached to its diagnosis. The financial, emotional and social costs are high. Public knowledge is improving but attitudes remain largely negative. People with dementia and their carers are certainly one of the most vulnerable and invisible in society.

Ireland has an ageing population and therefore the numbers with dementia are likely to grow, particularly among the very old. The fastest growth area in the population is that aged 80 or older, so we are likely to see an increase in dementia numbers. There are just under 50,000 people with dementia in the country. By 2041, that number will have trebled to roughly 140,000 people. The numbers will increase, so the big challenge is to find ways of addressing some of the needs associated with dementia. The South Tipperary Dementia Pilot Project is about trying at an early stage to get to the heart of caring for those with dementia in their own homes.

We have done some work on the main costs of dementia nationally and, relative to other diseases, dementia has a huge cost. Our calculations show that the annual cost of dementia is about €1.9 billion, which is a significant cost relative to treating heart disease or cancer. The main driver of those costs are family carers who essentially provide most of the care for those with dementia. Approximately 50% of the costs are associated with family carers when a value is put on their informal care. This makes it different from other diseases whose treatment is associated with technology.

Residential care costs are also high but, interestingly, primary and community care costs are pretty low. This is because we have not yet got to the point where we are providing such services. This is an important point to note in the context of what Dr. Crowe and Ms Leonard will say later. Dementia is a different type of issue than the normal things we come up against in health where many costs are taken up by high technology and acute care. This is what makes it different.

The current realities include a lack of focus on preventing dementia, which is not often talked about. Some dementia issues have a preventative aspect, especially with regard to heart disease and stroke. We therefore need to concentrate on what we can prevent. Diagnosis is still largely poor and there is a stigma associated with it. Many people are unaware of the disease. The majority of the 48,000 I spoke of earlier would not have a diagnosis, which makes it very different from other illnesses. If it is unknown, we do not do enough about it.

Community care is largely fragmented and incomplete, although some valuable work is being done. We need to put the focus firmly on home-based care, supporting families and individualised and personalised care. Dr. Crowe will say that having that link to the clinical lead and having a focus on individualised and personalised care is a new dimension for caring for people with dementia in this country.

We know the Government's policy and we have just had a national dementia strategy, but the key is how we implement it. It is good that the strategy is there and the objective is to keep people in their own homes for as long as possible and practicable. The implementation of that strategy is the key element. We are hot on the heels of other countries that have national dementia strategies. The emphasis is on diagnosis, finding pathways to care that support those with dementia, personalised care, and having adequate residential care.

The national dementia strategy must be framed in a philosophy which is about person-centred care and personhood. It is also about the capabilities, inclusiveness and inclusivity of those with dementia within the system. The critical element of the implementation strategy is how to get to the person with dementia and their family carer in a way that will enhance the care experience. Dr. Crowe will speak later on about the South Tipperary Dementia Pilot Project, which is essentially wrapped up in a person-centred, personhood model.

The focus of implementing the national dementia strategy should be on the person with dementia, the family carer, and looking after people in their own homes. If we manage to do so, it will not only have a health benefit but will also have a potential economic benefit. If we can keep people out of residential care, it will be a major and valuable addition to resource allocation. Dr. Crowe will demonstrate that with some figures.

This brings me to what we need to do differently and why the south Tipperary project is so important. The current policy is encompassed in four or five key words. This is not only for Ireland but also internationally, where we need to move to a new model. Currently, we tend to think about dementia as individual, overly biological, and in terms of residential care, risk, deficits and exclusion. We must transform care from a world where these words - individual, biological, residential, risk, deficits and exclusion - are in common usage. Can we transform that world into one where we see dementia in some sense of collective, society and home-based care? Can we move from risk to examining people's capabilities, what they can still do, and how they can still engage in society and the local community? If we can move towards thinking of older people with dementia as significant assets in local communities and also moving from exclusion to inclusion, that is the real challenge. That is what is interesting about what Dr. Crowe is going to say - the transformation of a model from exclusion to inclusion.