1. RESEARCH AND SOCIAL CARE PAUL McGILL STRATEGIC RESEARCH OFFICER, CARDI 16 MAY 2013 CARDI Presentation

2. Centre for Ageing Research and Development in Ireland (CARDI)  Promote research on ageing issues and older people  Communicate research  Improve the lives of older people in Ireland  Special focus on those who are disadvantaged  Encourage collaboration and partnership We are not an advocacy body, except for research 2

3. Background - population change 3

4. Older population 2001-2011 4

5. … and projected to 2056 5

6. Implications Very large and ever-increasing number of people aged 85+ in future years. How healthy will they be? Questions (but no real answers!)  How many will need care?  How intensive will their care needs be?  What form will the care take?  How can we ensure quality care?  Who pays, and how? 6

7. Demand for care to 2021 From people aged 65+ with disabilities Residential care+ 4,27045% Care from statutory providers+ 4,20037% Informal care+11,00026% Source: Wren et al 2012 However, the numbers, intensity and form of care are a matter for policy makers as well as for the older people involved. 7

8. Policy background Transforming Your Care proposing closure of half of public care homes in NI Clouded by poor implementation, inadequate consultation, short timescales and political controversy Need to keep the needs and interests of older people to the fore e.g. forced moves/ danger of greater mortality 8

9. Evidence on policy But it’s not a simple issue – most do not want to go to nursing homes in the first place (Begley et al 2011) CARDI evidence: Over-medication and inappropriate medication: Average no of medicines per resident:11 Proportion receiving at least one PIM67% (Source: Byrne et al 2011) But also evidence of good care e.g. for people dying with end-stage dementia (Cahill et al 2011) 9

10. Quality of care Whatever the type of care (residential, at home, with or without telecare, supported housing) the priority is the quality of care. That depends on:  The policy decisions taken  Quality of the management of change  Resources available  Pay, status, training and development of care workers in changing and challenging times 10

11. Evidence outcome Guidelines to help nursing homes develop policies and practices in end-of- life care for residents with dementia (Cahill et al 2011) 11

12. Guideline 1 1. People with dementia approaching the end-of-life in nursing homes should be provided with individualised care that promotes quality of life and is totally respectful of the person dying – as that person is now and as he or she was earlier in life. There should be recognition that at the end-of-life medical interventions usually focus on improving quality of life rather than on seeking to cure. 12

13. Guideline 2 2. All end-of-life care should promote dignity through excellent personal care. End-of-life care should ensure that residents with dementia are comprehensively assessed at regular intervals and that their needs are managed with appropriate skill and attention to detail. This approach requires consistency in the delivery of individualised care that is underpinned by a comprehensive knowledge of the person’s uniqueness and life history. 13

14. Guideline 3 3. All staff involved in the delivery of such care to residents with end-stage dementia should receive regular training and guidance in caring for people with dementia, so that they maintain their skills in delivering quality care. All staff should also receive education and training in palliative care principles and interventions in the context of dementia. This training should be relevant to their changing roles and responsibilities. Nursing staff should also receive regular training in gerontological nursing. 14

15. Guideline 4 4. The nursing home should be proactive in seeking integration within its local healthcare system through developing relationships with all professionals involved in the delivery of care to residents with dementia. As an active participant in such a network, the nursing home will need to demonstrate excellence in verbal and written communication in order to benefit individual residents and their families. 15

16. Guideline 5 5. End-of-life care must reflect an understanding of, and support for, family members’ needs. It should acknowledge family members’ life-long relationships with the dying person and their need to understand the decision-making process surrounding end-of-life care and to have the opportunity to participate in the decision-making, in the best interest of the person with dementia. Optimal nursing home care also fosters the development of meaningful relationships and a sense of partnership and trust between staff, residents and their families. 16

17. Conclusion Research has an important – indeed an essential - role to play in planning for the future. Research involving older people can throw clear light on issues and on solutions. However the formulation and implementation of policy must also engage older people affected. Economies may be possible and we can do things smarter – but we must not sacrifice quality care. Care workers are at the centre of quality care. 17

18. Finally… Thank you for listening For more information you are welcome to look at www.cardi.iewww.cardi.ie Or email me at paul@cardi.iepaul@cardi.ie 18