Has Ireland’s first National Dementia Strategy made dementia a national priority?

Aims of Presentation Outline how the strategy was formulated Detail the contents of the strategy Reflect on achievements and where additional action is needed Describe plans for implementation

The Process: Role of the ASI Years of advocacy and political engagement: -Pre-budget submissions -General election campaign -Dementia summits -Expert policy papers -Political advocacy

The Programme for Government Commitment “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.”

The Process: Evidence and Consultation Developing the evidence base Consultation and submissions Working Group and Terms of Reference

The Process: Government NDS Working Group Working Group membership range of clinicians, academics, researchers, HSE staff, and the ASI ASI priority input to NDS Working Group Ensure the voice of person with dementia and carers is at the table (Irish Dementia Working Group and NDS Working Group Roundtable; Carers and NDS Working Group Roundtable) Listen to voices of other key stakeholders through two clinicians roundtables

THE STRATEGY

The Strategy (1) Principles to underpin care and support for people with dementia: Take account of dementia in the development and implementation of existing and future health policies People with dementia should be encouraged to participate in society and in their own communities as fully as possible for as long as possible End-of-life care for those with dementia should be prioritised and provided in the most appropriate setting All those caring for or providing services to people with dementia should be appropriately trained and supervised Resources should be directed to provide the best possible outcome for those with dementia and for their families and carers

The Strategy (2) 6 Priority Areas Better Awareness and Understanding Timely Diagnosis and Intervention Integrated services, supports and care for people with dementia and their carers Training and Education Research and Information Systems Leadership

Better Awareness and Understanding Public awareness and health promotion measures (HSE) Provide a better understanding of dementia in society Reduce stigma Target populations particularly at risk Support the implementation of the governments healthy Ireland framework Implement the national physical activity strategy Better understanding of dementia among staff of frontline public services (HSE & DoH)

Timely Diagnosis and Intervention Material for GPs (HSE) dementia reference material on care pathways to investigation and diagnosis info on health and social support in the community Guidance material on the appropriate management of medication (HSE) Modifiable lifestyle risk factors to be included in care plans Review existing service arrangements - GP and acute hospital clinicians’ access to specialist assessment and diagnosis of dementia (HSE)

Timely Diagnosis and Intervention – additional actions Implement national consent policy (HSE) Promote awareness of the Assisted Decision Making (Capacity) Bill; support people with dementia to participate in all decisions that affect them (HSE) Consider the provision of Dementia Advisers on the basis of the experience of a number of demonstrator sites (HSE) Examine issues around assessment of people with Down Syndrome and other types of intellectual disability (HSE)

Integrated Services, Supports and Care for People with Dementia and their Carers Review health and personal social services for people with dementia (HSE) Consider how best to use existing resources for home care packages and respite care; improve supports available for family carers to enable people to live at home (HSE) Evaluate potential of assistive technology to support carers and people with dementia (HSE) Ensure info on supports is routinely given to people with dementia and their families/carers (HSE)

Additional actions Regulation of home and community care services for people with dementia (DoH) Ensure use of the carer assessment component of the Single Assessment Tool (HSE) Acute hospital related actions: o dementia and delirium care pathway (HSE) o senior clinician to develop, lead and implement this pathway (HSE) o dementia specific care pathways through ED and Acute Medical Units (HSE) o develop guidelines on dementia-friendly ward specification (HSE) o prioritise the assessment of social and environmental supports for people with dementia and their carers (HSE) Implement policy ‘Towards a Restraint Free Environment in Nursing Homes’ (HSE) Where required every effort will be made to secure placement to a suitable old age psychiatry unit (HSE) Examine appropriate long-term care options to accommodate the diverse needs of people with dementia (HSE)

Training and Education Encourage and facilitate the provision of dementia-specific training, to relevant occupational and professional groups, including peer-led support and education for GPs and to staff of nursing homes (HSE) Additional action: Develop appropriate training courses for family and other informal carers (HSE)

Research and Information Systems Additional action: Ensure data from Single Assessment Tool informs dementia care in Ireland (HSE) Take measures to ensure appropriate recording and coding of dementia in primary care and the development of practice-based dementia registers (HSE) Hospitals to take measures to encourage better recording and coding of a primary or secondary diagnosis of dementia in hospital records

Leadership Responsibility for dementia will be a person at HSE senior management level HSE Clinical Strategy and Programmes Division to establish a work stream on Dementia Care as part of its Integrated Care Programme for Older Persons A key worker in primary care to play a key role in co-ordinating each patient’s care and promoting continuity Additional actions: HSE to provide leadership for the implementation of the Strategy with clear and effective management structures Develop performance indicators to measure progress in implementing the strategy. Mid-term review in 2016 (DoH & HSE)

IMPLEMENTATION

Funding €30 million – DoH and HSE allocated €14.7 million – Matching investment by Atlantic Philanthropies Three areas – Intensive Home Care Supports – GP training and education – Dementia Awareness In addition, €4.7 million allocated to dementia research

Monitoring (1): Where to from here The Government’s national monitoring group Insert composition of this: Include - Helen Rochford Brennan, Irish Dementia Working Group and Sean Donal O’Shea, Dementia Carers Campaign Network

Achievements Positive first step Key stakeholders engaged HSE responsibility and leadership shown – Implementation office Some funding available Broader political engagement and awareness around the strategy Focus on clinical leadership, assistive technologies, dementia care pathways, awareness raising, education, research Expected increases in public awareness and increased rates of diagnosis

Gaps for further action Funding for three priority areas only, reconfiguration of other resources where possible Embedded in health and social care, absence of social and community approach Lack of human-rights based approach Lack of recognition of diversity of the population of people with dementia addressed e.g. those with younger onset, those living in residential care Lack of leadership within the Department of Health

ASI’s role Our work will assist the implementation of the 14 priority actions, by: 1. Continue to raise public awareness of dementia and challenge the stigma that surrounds dementia 2. The Dementia Adviser and information services will provide information supports to people with dementia and their families throughout their journey. 3. We will strengthen our education and training for family carers while also strengthening the skills of staff and volunteers. 4. We will continue to develop our community supports for people during all stages of dementia. 5. Play a role in monitoring the implementation of the strategy.

Thank you... Contact details Tina Leonard Head of Advocacy and Public Affairs