2. Ireland’s first National Dementia Strategy

3. Our Hopes for the National Dementia Strategy

4. Aims of Presentation The Context: Towards a Strategy and the role of ASI The Process: Drafting the strategy and the role of ASI The Strategy: Content of the NDS

5. THE CONTEXT

6. Dementia, an international political and health priority “More than 35 million people worldwide, a number that is expected to almost double every 20 years” (G8 Dementia Summit) “By 2040, as many developed countries’ populations get older, neurodegenerative diseases such as Alzheimer’s and other causes of dementia and conditions, such as Parkinson’s disease and amyotrophic lateral sclerosis (ALS), will overtake cancer to become the second leading cause of death after cardiovascular diseases” (World Health Organisation)

7. CONTEXT cont.... - Driven by changing demographics and the economic cost of dementia - Paris Declaration 2006 - European Parliament (EP) 2011 European Initiative on Alzheimer’s disease and other dementias - European Parliament calls for dementia to be made an EU health priority - WHO - World Health Organization and Alzheimer’s Disease International (2012) ‘Dementia: a public health priority’ - G8 Dementia Summit 2013 Dementia Strategy (2009) and Dementia Challenge (2012) The Challenge’s efforts have increased dementia diagnoses by 10 percent in the first year of the project)

9. Dementia strategies Europe 2013

10. The Context (2): Ireland Action Plan for Dementia (O’Shea and O’Reilly, 1999) 2011 election campaign included a clear ask for Government to make a dementia strategy a priority The Programme for Government 2011-2016 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.”

11. THE PROCESS

12. The Process: Role of the ASI - Become a friend of Dementia, 2011 (general election) -General election campaign: staff played key role - election materials included voter prompt cards, candidate pledge cards and an information poster. Materials were distributed across ASI services to staff, supporters, volunteers and family carers. - Alzheimer pledge, 2012 – Towards a National Dementia Strategy - Pre-budget submission and politicians prompt card -ASI submission - The campaign succeeded in securing a commitment in the Programme for Government to the development of a national dementia strategy by 2013

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

14. The Process: 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

15. The Process: Irish Dementia Working Group (IDWG) Voice of person with dementia and carers is at the table Background to the IDWG

16. THE STRATEGY

17. Dementia and Palliative care As part of Palliative Care for All – 2 significant pieces of work on dementia evolved ‘Opening Conversations’ was a small- scale qualitative research project - model of best-practice palliative care interventions for people with dementia and Report - Building Consensus for the Future: Report of the Feasibility Study on Palliative Care for People with Dementia, Irish Hospice and The Alzheimer Society of Ireland

18. 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 prioritise 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

19. End of life and palliative care A Feasibility Study carried out jointly by the Irish Hospice Foundation and the Alzheimer Society of Ireland concludes that palliative care should not only be considered as having a role at end-of-life, but that it extends from point of diagnosis through the trajectory of the illness, to end-of-life and bereavement support for family members. It was considered that this approach would provide people with dementia with opportunities to plan their future care needs and address any fears and apprehensions they may have as their disease progresses. The inclusion of palliative care principles in services for people with more advanced dementia will help staff in these services to communicate, support and manage a spectrum of care issues ranging from advance care planning to decision making regarding clinical interventions and to specific ethical dilemmas that present for people with dementia and their families. Key principle in the NDS: Regular assessments of palliative care need should be conducted by staff providing care to people with dementia. Staff should have the training in the principles of palliative care needed to assess palliative care need, and referral should be made to specialist palliative care services to support care provision where required. People with dementia should be supported to be cared for in the place of their choice, as far as is possible, including at the end of life.

20. 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

21. Priority Area: INTEGRATED SERVICES, SUPPORTS AND CARE FOR PEOPLE WITH DEMENTIA AND THEIR CARERS 3 Key objectives here is : Better co-ordination, integration and smoother transitions between primary, secondary, mental health, community care, acute, long term and palliative care services. Staff in all care settings should have the necessary training for treating and supporting a person with dementia, including training in palliative approaches that are appropriate for people with dementia. People with dementia should be facilitated and supported to live and die well in their chosen environment including their own home or nursing home if that is their choice. Specialist palliative care should be available to all people with dementia and their families in all care settings and at home, if required, to optimise quality of life and support a comfortable and dignified death

22. Better Awareness and Understanding HSE to implement public awareness and health promotion measures to: 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 phsyiscal activity strategy DoH and HSE to promote a better understanding of dementia among staff of frontline public services

23. Timely Diagnosis and Intervention HSE to develop material for GPs dementia reference material on care pathways to investigation and diagnosis Info on health and social support in the community HSE to develop guidance material on the appropriate management of medication Modifiable lifestyle risk factors to be included in care plans HSE to review existing service arrangements to maximise GP and acute hospital clinicians’ access to specialist assessment and diagnosis of dementia

24. Timely Diagnosis and Intervention – additional actions -HSE implement the national consent policy -HSE to promote awareness of the Assisted Decision Making (Capacity) Bill, when enacted and support people with dementia to participate in all decisions that affect them -HSE to consider the provision of Dementia Advisers on the basis of the experience of a number of demonstrator sites -HSE to examine the issues arising regarding the assessment of people with Down Syndrome and other types of intellectual disability

25. Integrated services, supports and care for people with dementia and their carers HSE to critically review health and personal social services for people with dementia HSE to consider how best to use existing resources for home care packages and respite care and improve the supports available for carers to facilitate people to live at home HSE to evaluate the potential of assistive technology to support carers and people with dementia HSE to ensure information on how to access advocacy services, voluntary organisations and other support services is routinely given to people with dementia and their families/carers

26. Additional actions DoH to formulate proposals and timelines for the regulation of home and community care services for people with dementia HSE to ensure the use of the carer assessment component of the Single Assessment Tool HSE to develop and implement a dementia and delirium care pathway HSE to assign a senior clinician within each hospital to lead the development, implementation and monitoring of the pathway Hospitals to ensure dementia specific care pathways through Emergency Departments and Acute Medical Units HSE to develop guidelines on dementia-friendly ward specification for the design stage of all refurbishments and new builds Hospitals to prioritise the assessment of social and environmental supports to meet the needs of people with dementia and their carers HSE to work to maximise the implementation of national policy ‘Towards a Restraint Free Environment in Nursing Homes’ Where a person with dementia needs acute admission to a psychiatric unit, every effort will be made to secure placement to a suitable old age psychiatry unit HSE to examine a range of appropriate long-term care options to accommodate the diverse needs of people with dementia,

27. Training and Education HSE to encourage and facilitate the provision of dementia-specific training, including continuous professional development, to relevant occupational and professional groups, including peer-led support and education for GPs and to staff of nursing homes. Additional action: HSE to develop appropriate training courses for family and other informal carers in keeping with priorities highlighted in the National Educational Needs Analysis completed by the HSE in 2009 and Dementia Skills Elevator 2014.

28. Research and Information Systems Additional action: HSE to ensure data from the Single Assessment Tool is factored into research to inform dementia care in Ireland HSE to take measures to ensure appropriate recording and coding of dementia in primary care and the development of practice-based dementia registers Hospitals to take measures to encourage better recording and coding of a primary or secondary diagnosis of dementia in hospital records and ensure relevant information is captured on HIPE

29. Leadership Clear overall responsibility for dementia will be assigned to a person at HSE senior management level The HSE Clinical Strategy and Programmes Division to establish a work stream on Dementia Care as part of its Integrated Care Programme for Older Persons Within primary care services, a key worker to play a key role in co-ordinating each patient’s care and promoting continuity.

30. Leadership – additional actions HSE to provide leadership at a system level for the implementation of the Strategy with clear and effective management structures The DoH and the HSE to develop performance indicators to measure progress in implementing the strategy. Mid-term review in 2016

31. ASI response welcome this first step while recognising that real progress will require strategic financial investment and a new social and community approach to dementia. there are certain aspects of the Strategy that have not met our expectations. - lack of priority given to the needs of people with younger onset dementia and the absence of a commitment to remove age discrimination barriers in the health system. - there is little focus on residential care. There is also very little in the priority actions that gives rise to a new social and community approach to dementia or prioritises the development of the Dementia Friendly Community model. - We do welcome the identification of new HSE leadership around dementia, but are disappointed that this is not mirrored within the Department of Health.

32. Your thoughts???

33. Thank you... Contact details Margaret Crean Policy Officer email: margaret.crean@alzheimer.ie DD: 00 353 1 2073832 Mob: 00 353 860295634 Website www.alzheimer.iewww.alzheimer.ie