Alex White (Dublin South, Labour) | Oireachtas source

I thank Senators for the opportunity to address the motion on mental capacity legislation and dementia. It is encouraging and gratifying to note the level of agreement across the House in respect of the issues dealt with in the motion. It was tabled initially by my colleagues in the Labour Party, supported by Fine Gael colleagues in government, the Taoiseach's nominees, Fianna Fáil, Sinn Féin and Independent Senators, all of whom have stated their strong support not just for the sentiments but the commitments and necessary actions that are required to be taken in the context of this challenging area. The level of cross-party support is encouraging as is the level of engagement with the debate, and the insights various Members have brought to it, in some instances from a personal experience, are always important. For example, Senator Barrett, who was never without an insight in respect of any of these matters, pointed to the importance of research and evidence that our policy making should be based on evidence.

It is extremely important that such research should be done in so far as it is possible. I believe Senator Barrett also made the point about prevention and the broader holistic view of the health-care system. We should not simply regard our strategy as one of reaction to an emerging problem an individual has, but it should be, as it were, a whole-of-life strategy. Certainly an element of our health-care strategy should not be based simply on reacting to people who become ill, but to have ways and strategies for anticipating that and the system responding to it in so far as it is possible for us.

On coming into office the Government made a firm commitment in the programme for national recovery to introduce a mental capacity Bill that is in line with the UN Convention on the Rights of Persons with Disabilities. The mental capacity Bill will reform the law in respect of adults who are vulnerable in the sense that they may lack some or all capacity to make important decisions for themselves. It will modernise the law on capacity, some of which dates back 200 years, and will bring Irish capacity legislation into line with current thinking and modern legislative frameworks worldwide. The purpose of the Bill is to put in place a comprehensive legal framework to support adults who do not have full decision-making capability. This covers a wide spectrum, ranging from people with dementia to persons with intellectual disabilities or acquired brain injuries.

In summary, the Bill will: reform legislation protecting adults who, owing to intellectual disability, illness or accident, are unable to make decisions for themselves or exercise their legal capacity; provide a new understanding of mental capacity based upon a time-specific and issue-specific, functional approach; replace the wards of court system which is the existing mechanism for managing the affairs of persons who lack decision making capacity; progress the process towards ratification of the UN Convention on the Rights of Persons with Disabilities, which was signed by Ireland on 30 March 2007; and give effect to the Hague Convention on the International Protection of Adults. The statutory guiding principles underpinning every support or intervention made in regard to persons lacking capacity will reflect the UN convention principles of respecting the dignity and the autonomy of each individual person, including the freedom to make his or her own choices.

In the drafting of the Bill careful attention has been given to putting in place safeguards to protect vulnerable adults from exploitation. In particular, the Bill will contain detailed provisions for the supervision of personal guardians of adults lacking capacity and also of donees of enduring powers of attorney. The Government legislation programme indicates that the Bill is expected to be published in this session.

Our health services are caring for an ageing population with varying needs and conditions including dementia, which is a progressive condition that not only has a huge impact on the physical, psychological and emotional state of the person with dementia, but also on their families and carers. We all want to see people given more opportunities to live full and meaningful lives on their own terms. It is vital that people with dementia are not defined by the disease. We must remember that with the correct supports in place, people can live full and active lives even after a diagnosis.

There is no doubt that society is enriched by the positive participation of all its members and our objective is to have a society where those at risk of social exclusion are fully integrated into their local communities, and are supported to participate to their full potential within those communities. Government policy aims to support people with dementia to live in dignity and independence in their own homes and communities for as long as possible. I am confident that there is common agreement across the House with this philosophy.

The programme for Government makes a clear commitment to develop a national strategy for dementia by 2013. It is worth quoting this commitment, because I take the point made by Senator Cullinane and others that while a motion is very important and can focus our thinking, commitment and engagement, what is really important at the end of the day is what flows from the commitments given and the action taken. The programme for Government states:

We will develop a national Alzheimer's and other dementias strategy by 2013 to increase awareness, ensure early diagnosis and intervention, and development of enhanced community based services. This strategy will be implemented over five years.

I believe we can all agree that relevant and accurate research is a key ingredient in ensuring that policy development is proactive as opposed to reactive and avoids crisis-driven service delivery into the future. The first stage of the process was to assemble the research evidence upon which the policy will be developed. This body of work was completed in January when the report entitled Creating Excellence in Dementia Care: A Research Review for Ireland's National Dementia Strategy was presented to the Minister for Health, Deputy Reilly.

At present, it is estimated that more than 41,000 people living in Ireland have dementia. The pressing need for a strategy on dementia is best understood in the context of projected increases in the number of people with this disease reaching between 141,000 and 147,000 by 2041. We obviously need to plan for this significant increase and the resulting demands on our health services in the future.

The review has estimated the overall cost associated with dementia in Ireland to be almost ¤1.7 billion per annum, with 48% of this figure representing informal care provided by family and friends and a further 43% representing residential long-stay care costs for those living with dementia in the community. This research highlights the primary importance of the role that families and communities play in affecting the environment of care for people with dementia.

Among the key elements arising from the research which need to be considered in light of the strategy are: enhancing public awareness about dementia; increasing the numbers of early diagnoses; and introducing measures to improve quality of life and quality of care for those with dementia. These and other key elements will influence the development of the strategy. It is important to acknowledge the hard work and commitment invested by the advisory committee that guided and oversaw this research. It provides a solid foundation and clear framework within which to achieve our objectives.

The next stage of the process involved a public consultation process and the closing date for submissions was 31 August. The Department sought the views of interested parties, whether individuals or organisations, to help inform the development of the strategy, with a particular request to hear the views of those directly affected by Alzheimer's and other forms of dementia, including people who have been diagnosed with one of these conditions, and their families and carers.

I am pleased to say that we received more than 70 responses to the call for submissions. Submissions were received from individuals, representative organisations, family carers and health-care professionals. I take this opportunity to express my gratitude to those who participated. These contributions will serve as a platform for discussion and will further inform the development of the overall strategy. The next step will see the establishment of a working group to develop the strategy fully in 2013.

The central focus of service provision must always be that it is person-centred, a point made by Senator O'Keeffe at the outset of the debate. We need to recognise, respect and support the individual, and ensure that we keep them and their families at the very centre of all decisions and decision making.

The Health Service Executive provides a range of services for people with dementia including primary care services, in which I have a particular interest, involvement and lead role; home support services; day care; respite and continuing care services. These services are delivered through the HSE's network of local offices, via public health nursing, day-care centres and public and private residential care facilities and, where appropriate, psychiatry of old age teams. The HSE also funds non-governmental agencies, for example, the Alzheimer Society of Ireland, Caring for Carers Ireland, and Western Alzheimers.

A limited number of memory clinics and specialist services are available. Respite care is the most commonly requested service and is provided in a number of ways, including the provision of a home care package to support respite in a person's home or day respite within dementia specific or generic day care centres. Respite is also provided in residential homes. In addition, care or support groups have been established throughout the country, details of which can be obtained from individual local primary care teams.

I would like to acknowledge in particular the magnificent and impressive role played over so many years by the Alzheimer Society of Ireland, which this year is celebrating 30 years of representing the needs and interests of dementia patients and their carers.