dementia-related policy

Living Matters, Dying Matters: A Palliative and End of Life Care Strategy for Adults in Northern Ireland

Dept. of Health, Social Services and Public Safety

This strategy identifies palliative and end of life care as a continuum of care that can evolve as a person’s condition progresses.

 The five year Strategy sets out a vision and direction for service planning and delivery, within the existing legal framework.  The strategy includes dementia among the chronic conditions considered and refers to the work already completed in “Dementia; NICE-SCIE Guideline on Supporting People with Dementia and their Carers in Health and Social Care” (NICE 2006). 

National Disability Strategy Implementation Plan 2013-2015

Department of Justice and Equality

Disability policy in ROI remains largely as set out in the National Disability Strategy which was published in 2004. The Disability Act 2005 and the Citizens Information Act 2007, which are legislative parts of the strategy, have been passed but have not been fully implemented.

The National Housing Strategy for People with a Disability (2011), the Value for Money Review of Disability Services in Ireland (2012) and the allied Report of Disability Policy Review by the Expert Reference Group (2011) are among the key reports published in 2011 and 2012 that signalled new directions for disability policy and significant changes in how disability support services are to be delivered in ROI. The National Implementation Framework for the recommendations of the Value for Money and Policy Review of the Disability Services Programme provides a mechanism for the implementation of significant change in disability services as does the National Disability Strategy Implementation Plan published in 2013, which sets out the practical measures that will be taken to advance the National Disability Strategy over the period 2013 to 2015. The latter strategy aims to promote an inclusive Irish society where people with disabilities can reach their full potential and participate in the everyday life of the community. Four High Level Goals (Equal citizens, Independence and choice, Participation, Maximising potential) were agreed by the National Disability Strategy Implementation Group (NDSIG), with key actions under each goal and objective. While there is no explicit mention of dementia in the Implementation Plan, one of the high level goals of the plan is that people with disabilities are free from discrimination and treated as equal citizens by their fellow citizens and this applies equally to all people with a disability including those affected by dementia.

Aspects of the NDSIP that exemplify relevance to people with dementia include:

  • Publication and enactment of the Assisted Decision Making (Capacity) Bill to give full legal capacity to people with disabilities.

  • Provision of disability awareness training by public transport operators to their staff and management.

  • Improved accessibility of public buildings and facilities.

  • Support for the provision of advocacy services for persons with disabilities and mental health difficulties.

  • Support for new models of respite support.

  • Development of policy guidelines to improve access for people with disabilities in relation to public roads and pedestrian facilities.

  • Development of a protocol for strategic assessment of nature and extent of housing needs of persons with disabilities.

  • Encouragement of service providers to develop health promotion programmes for persons with disabilities.

  • Support for sports partnership, Age Friendly and Social Inclusion programmes to assist people with disabilities to engage in activities, including through requirement of funding for programmes such as Sports Capital Grants.

National Housing Strategy for People with a Disability 2011-2016

Department of Environment, Community and Local Government

The National Housing Strategy for People with a Disability 2011-2016 sets out nine strategic aims including “to promote and mainstream equality of access for people with a disability to the full range of housing options suited to individual and household need” and “to support people with a disabi

lity to live independently in their own houses and communities”. The latter is in keeping with a key objective of the Irish National Dementia Strategy, which states that “people with dementia should be facilitated to remain living in their own homes and to maintain existing roles and relationships for as long as possible” (2014: 24). The National Housing Strategy for People with a Disability supports the Programme for Government commitment to promote and support universal design, particularly to ensure accessible housing. It states that ’technology can assist people with dementia, in association with safe and well-designed living spaces, to live as independently as possible’ (2014: 95). 

A Strategy to Improve the Lives of People with Disabilities 2012-2015

Office of the First Minister and Deputy First Minister

Addressing their responsibility to deliver the commitments in the United Nations Convention on the Rights of Persons with Disabilities this policy was also informed by the recommendations of the Promoting Social Inclusion (PSI) Working Group’s report on Disability.

The strategy addresses a series of cross cutting themes (e.g. participation and active citizenship, awareness raising, independent living/choice and control).

While dementia is not referred to specifically, the theme addressing transition from adulthood to later life recognises that many areas of public service do not distinguish between growing old and acquiring a disability and that the prevalence of disability in those aged between 60 and 74 is four times that in those aged between 26 and 44 (Northern Ireland Survey of people with Activity Limitations (NISALD)). The strategy argues that older people with disabilities should be supported in addressing their needs so that they have the same opportunities as older people who do not have a disability. 

Bamford Action Plan 2012-2015

Dept. of Health, Social Services and Public Safety

The Bamford Action Plan (2009-2011) was produced in response to the Bamford Review (2007) - an independent review of mental health and learning disability law, policy and service provision commissioned by the DHSSPS  This 2012-2015 plan carries forward the work of the earlier Bamford Action Plan, and in terms of dementia commits to continuing to improve dementia services in line with the dementia strategy in NI, with its emphasis on ensuring that people with dementia are treated with awareness and respect, especially by those providing services, and that they are supported to maintain their independence for as long as possible.

Future Health: A Strategic Framework for Reform of the Health Service (2012-2015)

Department of Health

Future Health maps out the key actions, with timelines, that are required to achieve the Government’s objective to transform the Health System to a single-tier health service, supported by Universal Health Insurance (UHI) that is designed in accordance with the principles of social soli

darity.  Recognising the need for large-scale change that delivers fundamental reform, the policy is built on four key inter-dependent pillars:

  1. Health and Wellbeing

  2. Service Reform

  3. Structural Reform

  4. Financial Reform

While this policy does not specifically address dementia, it proposes fundamental change to the systems and service provision in ROI.  It highlights an ageing population as one of the key future issues in service provision.  The Strategic Framework has been designed to do three things:

∙ Set out the strategic policy direction for health reform up to 2015

∙ Deliver real tangible improvement in the quality of patient care well ahead of the introduction of UHI

∙ Prepare the ground for the introduction of UHI by radically reforming the way in which the current health system is organised, financed and delivered.

Transforming Your Care: A Review of Health and Social Care in Northern Ireland

Dept. of Health, Social Services and Public Safety

In December 2011 following an extensive consultation process the Minister for Health, Social Services and Public Safety published a report on the review of health and social care services.  This included a new model of care for NI based on 12 key principles:

  • Placing the individual at the centre of the model by promoting a better outcome for the service user, carer, and their family

  • Using outcomes and quality evidence to shape services

  • Providing the right care in the right place at the right time

  • Population-based planning of services

  • A focus on prevention and tackling inequalities

  • Integrated care – working together

  • Promoting independence and personalisation of care

  • Safeguarding the most vulnerable

  • Ensuring sustainability of service provision

  • Realising value for money

  • Maximising the use of technology

  • Incentivising innovation at a local level

Work continued after the report was published to develop implementation plans, including a further consultation process that resulted in the publication of: The Vision to Action Consultation Report.

The final strategic implementation plan was published in October 2013.

National Carers’ Strategy: Recognised, Supported, Empowered

Department of Health

The National Carers’ Strategy sets the strategic direction for future policies, services and supports provided by Government Departments and agencies for carers.

This includes carers of people with dementia, the majority of whom live at home in their own communities and for whom carers are the cornerstone of their care. The Strategy is a Cross-Departmental Strategy. It sets out guiding principles, goals and objectives addressing priority areas (income support, health, information, respite, housing, transport, training, employment, children and young people with caring responsibilities) and a Roadmap for Implementation containing 42 Actions to be achieved on a cost-neutral basis in the short to medium term.

The four goals of the National Carers’ Strategy are to:

  • Recognise the value and contribution of carers and promote their inclusion in decisions relating to the person that they are caring for

  • Support carers to manage their physical, mental and emotional health and well-being

  • Support carers to care with confidence through the provision of adequate information, training, services and supports

  • Empower carers to participate as fully as possible in economic and social life

The implementation of the National Carer’s Strategy is reported in progress reports. The First Annual Progress Report (September 2012 – September 2013) can be accessed here.

The Second Progress Report (September 2013-September 2014 can be accessed here.  

The Third Progress Report (September 2014-September 2015) can be accessed here.

The Fourth Progress Report (September 2015-December 2016) can be accessed here.

The National Positive Ageing Strategy: Positive Ageing Starts Now

Department of Health

The National Positive Ageing Strategy (NPAS), published in April 2013, is a high level commitment from the Government outlining a vision for ageing and older people in ROI.

It is an over-arching cross-departmental policy that serves as a blueprint for age-related policy and service delivery across Government. It includes four national goals to serve as a direction in achieving the vision outlined:

  • Remove barriers to participation and provide more opportunities for the continued involvement of people as they age in all aspects of cultural, economic and social life in their communities according to their needs, preferences and capacities.

  • Support people as they age to maintain, improve or manage their physical and mental health and wellbeing.

  • Enable people to age with confidence, security and dignity in their own homes and communities for as long as possible.

  • Support and use research about people as they age to better inform policy responses to population ageing in ROI

Each of these goals is underpinned by several objectives that are relevant to specific policy areas and cross-cutting objectives of combatting ageism and improving information provision.

Healthy Ireland provides the basis for the implementation of the National Positive Ageing Strategy. The Strategy committed to the development of an Implementation Plan, based on the strategic direction laid out in the NPAS. This is still under development, but will when developed facilitate:

  • Translation of the Goals and Objectives of the Strategy into action on the ground

  • Development of key deliverables in a more detailed manner, taking account of relevant linkages with other statutory agencies

  • Development of timelines and performance indicators

  • Specification of ‘direct responsible individuals’ across Government and wider civil society

For each of the National Goals and Objectives, Priority Action Areas were also identified in the strategy.  These were selected as key areas in which actions should be developed. They are intended to set the strategic direction for activity rather than prescribe the specific measures that will be taken to progress the implementation of the Strategy. 

Most recently the government have produced the Positive Ageing 2016 report which presents findings from a wide range of existing resources on what matters for older people. It sets out the evidence under the three pillars identified in the National Positive Ageing Strategy offering a benchmark for the future against which to measure progress.

Positive Ageing 2016: National Indicators Report can be accessed here.

Active Ageing Strategy 2014-2020 – Consultation Document

Office of the First Minister and Deputy First Minister

NI’s ageing strategy, Ageing in an Inclusive Society, was published in 2005 and an active ageing strategy is currently being developed to replace the existing strategy. The purpose of the new strategy will be to transform attitudes to and services for older people.

When developed, it is intended to provide direction for Departments’ policies, make connections between a range of relevant Strategies and lead to the improvement of services for older people. As well as increasing the understanding of the issues affecting older people, the active ageing strategy is expected to facilitate a move away from an emphasis on needs, costs and burden of ageing to the promotion of rights, value and contribution of older people. NI’s national dementia strategy is referred to regularly in the consultation document. The consultation document has outlined five high level goals: independence, participation, care, self-fulfilment and dignity, all of which are significant goals for people with dementia. Feedback from The Active Ageing Strategy Consultation, which closed in May 2014, will inform the final version of the strategy due for publication in 2015. 


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