Legislation

The Assisted Decision Making (Capacity) Act (2015) was signed into law on the 30th December 2015. This Act applies to everyone and is relevant to all health and social care services.  The Act is about supporting decision making and maximising a person’s capacity to make decisions. Once in force, this legislation will impact on policy and practice for people with dementia and their families.  The Alzheimer Society of Ireland wrote a policy position paper detailing the key elements of the legislation.

The full act is available here. The Alzheimer Society of Ireland played a significant advocacy role, since the Irish Bill on capacity was published in 2013, to ensure that the proposed legislation improves the situation of people with dementia.

Overall, the Assisted Decision-Making (Capacity) Act 2015 provides a modern statutory framework supporting decision-making by adults who have difficulty in making decisions unaided. It repeals the Marriage of Lunatics Act 1811 and cause the Lunacy Regulation (Ireland) Act 1871 to cease to have effect. The Act provides for the replacement of the Wards of Court system for adults, which is the existing mechanism for managing the affairs of persons whose capacity is impaired.

Decision Making Support Options

When the Act is commenced it will introduce three types of decision-making support options to respond to the range of support needs that people may have in relation to decision-making capacity. With each of the three decision-making support options decisions can be made on personal welfare, property and finance or a combination of both. The support options are as follows:

1.  Assisted decision-making: a person may appoint a decision-making assistant – typically a family member – through a formal decision-making assistance agreement to support him or her to access information or to understand, make and express decisions. Decision-making responsibility remains with the person. The decision-making assistant will be supervised by the Director of the Decision Support Service.
2.  Co-decision-making: a person can appoint a trusted family member or friend as a co-decision-maker to make decisions jointly with him or her under a co-decision-making agreement. Decision-making responsibility is shared jointly between the person and the co-decision-maker. The co-decision-maker will be supervised by the Director of the Decision Support Service.
3.  Decision-making representative: for the small minority of people who are not able to make decisions even with help, the Act provides for the Circuit Court to appoint a decision-making representative. A decision-making representative will make decisions on behalf of the person but must abide by the guiding principles and must reflect the person’s will and preferences where possible. The functions of decision-making representatives will be as limited in scope and duration as is reasonably practicable. The decision-making representative will be supervised by the Director of the Decision Support Service.

You can find out more about what will happen with current provisions such as Wards of Court, Enduring Powers of Attorney here

You can also read more about what you can do to plan for your future, where to go to get the information and advice you need to make decisions which are important now and into the future.

Advance Healthcare Directives

Advance Healthcare Directives have been introduced into Irish law as part of the Assisted Decision-Making (Capacity) Act.

A person with capacity known as a ‘Directive-Maker’ may make an Advance Healthcare Directive that will come into effect when s/he lacks the capacity to make healthcare treatment decisions for themselves.

The purpose of an Advance Healthcare Directive is to provide health and social care professionals with important information about a person’s healthcare treatment choices and to enable a person to be treated according to his or her own ‘will and preferences’ even when he or she no longer has the capacity to make decisions. A person’s ‘will and preferences’ are their wishes, views, beliefs and values.

An Advance Healthcare Directives Multidisciplinary Working Group has been established prepare draft codes of practice on the Advance Healthcare Directive provisions contained in the 2015 Act. ASI has submitted views and feedback on these draft codes, and how they can best support people with dementia.

You can read our policy submission here.

The majority of people with dementia live in the community, over 63%, and want to live at home in a familiar environment, receiving care when it is needed in this setting.  Appropriate home care can keep people well in the community and is a vital support for family carers, who provide the vast majority of home-based care for people with dementia.

There is an acute need for home care support services to be sufficiently funded to allow for an individual needs-led approach.  Long-term residential care is not only expensive, it is often inappropriate or people with dementia. Where home care services do exist they are often not responsive or flexible enough to meet the often complex and very individualized care and support needs of people with dementia.

Through our lobbying efforts and in our Pre-Budget Submissions The ASI has been calling for increased investment in home care and community based supports for many years. The ASI’s Pre-Budget Submission 2018 focused solely on the need for investment in home care supports for people with dementia

Government policy, as set out in the National Dementia Strategy, is to support people to stay at home, yet between 2009 and 2015 funding for long-term residential care increased, while funding for home care was cut. Through the Nursing Home Support Scheme Act (2009) people have clear access to long-term residential care and there is an obligation on Government to financially underpin this legislation. Similar transparent, financial and legislative commitments do not exist for home-based care.

The National Dementia Strategy includes funding for the delivery of Intensive Home Care Packages (IHCPs) for people with dementia.  These packages have been linked to delayed discharge, implemented initially to solve problems in the acute hospital system.  There is a need for greater investment in home care packages, and the protracted pace of investment and implementation of home care and community-based support is of serious concern.

Greater investment is something that the ASI called for in our submission to the Department of Health public consultation on home care services which was undertaken to develop plans for a new statutory scheme for home care services.  You can read our submission here.  You can also read the findings from the consultation here.

Minister for Health, Simon Harris TD published the Sláintecare Implementation Strategy in August 2018.  Sláintecare is the reformation of Ireland’s health system. The Sláintecare Report 2017 represents a fundamental shift, vision and strategic plan for the future direction of the Irish Health Services and sets out a ten year plan for reform with wide ranging recommendations for the future of Healthcare in Ireland comprising five key areas: Population Health Profiling; Entitlements and Access; Integrated Care; Funding; Implementation.

Sláintecare is an ambitious and complex reform programme that will take ten years to implement in full. The Sláintecare Implementation Strategy lays out the direction for the next ten years and actions for the next three years that will be taken to lay the foundations for reform.

You can read the full Sláintecare Implementation Strategy here

Sláintecare outlines a number of proposed measures, which if implemented, could significantly address a number of urgent challenges facing dementia care.  Several components of Sláintecare, if progressed in a meaningful and effective way, could greatly improve dementia care and services, as outlined in The Alzheimer Society of Ireland submission to the Committee on the Future of Healthcare which you can read here