Dementia Care in the UK

1. Dementia Care in the UK Professor June Andrews September 2011

2. Who are DSDC?

3. What do we do? • Information • Training • Consultancy • Change and innovation • Research • Improving the public understanding of dementia

4. How much of the UK £20 Billion spend on dementia is needlessly caused by our staff’s deliberate interventions? Care at home Institutional care Acute Hospital

7. Dementia • Alzheimers disease • Vascular dementia • Dementia with Lewy bodies • Fronto-temporal dementia • Mixed dementias • Creutzfeldt-Jakob disease

8. What does it mean? • Impairment of memory • Impairment of reasoning • Impairment of learning • Increase of stress • The normal changes of ageing but at the same time as a reduced capacity to deal with them

9. I don’t have time to help them eat…

10. The key to dementia care.... • Find the person with dementia • Give them support to care for themselves in the community and with their families • Prevent adverse incidents and emergencies • Prepare for the future

11. Find the person with dementia

16. Give support and prevent adverse incidents • Support for carers • Design • Medication • Self care • Information • Research based interventions

18. Dementia in England

19. National Institute for Health and Clinical Excellence NICE is the independent organisation in the NHS, responsible for producing guidance based on the best available evidence of effectiveness and cost effectiveness to promote health and to prevent or treat ill health.

20. Social Care Institute for Excellence SCIE develops and promotes knowledge-based practice in social care. It produces recommendations and resources for practice and service delivery and improves access to knowledge and information in social care by working in partnership with others.

21. Diagnosis Risk factors, screening and prevention Diagnosis and assessment Promoting independence Promoting independence Cognitive symptoms and maintenance of function Non-cognitive symptoms and challenging behaviour Comorbid emotional Disorders Interventions Palliative Care Palliative and end-of-life care

22. Dementia quality standard In 2010 NICE published a quality standard on dementia. This quality standard provides clinicians, managers and service users with a description of what a high-quality dementia service should look like It describes markers of high-quality, cost effective care that, when delivered collectively, should contribute to improving the effectiveness, safety, experience and care for adults with dementia The quality standard consists of 10 quality statements and can be found at: http://www.nice.org.uk/guidance/qualitystandards /dementia/dementiaqualitystandard.jsp

23. Dementia in Scotland, a national priority • Devolution • SNP administration • Attitudes to consultation

24. Dementia Forum • Chaired by minister usually • Involving key clinicians and organisations • Input and advice for Scottish dementia agenda

26. Dementia is a HEAT target From April 2008 each NHS Board delivered agreed improvements in the early diagnosis and management of patients with a dementia by March 2011. Each NHS Board initially responded to a target increase of 33%

27. There is a standard, integrated pathway • Required record of treatment for cognitive impairment • Ensuring receipt of intervention for behavioural or psychological symptoms • End of life advance planning in place

28. Dementia Friendly Premises • All new primary care premises • Initial survey checklist prepared • Two auditors trained in each NHS Board area in use of audit tool • Fourteen NHS Boards done at least one survey, some more

30. Dementia Improvement Pilots Funded a one year dementia improvement programme in one NHS Board area across all public and private sectors - “The Forth Valley Project”, Lothian and Shetland followed, along with Renfrewshire

31. Framework for mental health nurses • Respect • Rights and choice • Communication • Relationships • Health and wellbeing • Dementia specific care • End of life care

32. Mental Health Collaborative • Secured £9m to 2011 on attention to three mental health HEAT targets, one of which is dementia • Using IHI redesign principles, regarding dementia as a long term condition

33. Information • Coping with dementia (80k copies printed) • Other material, other formats, under development

34. Public awareness • Scoping study around attitudes of Scots to dementia • Initial outcomes allowing shaping of communications • Information campaign piloted in one NHS Board area

35. Chief Scientist Office • Supporting Scottish Clinical Research network • Support NHS clinicians and clinical academics with current research • Pulling together collaborating centres

36. Dementia in children • Conference • Publication of guidance • Conference report to be published

38. General • Clown doctors (Elderflowers) • Support for international conference • Training programme for post diagnostic support staff • Life story work • A&E Cross Party Alzheimer’s Group support

39. In the last year or so • Dementia strategy • Dementia standards • Dementia education standards for health care staff • Huge investment from Alzheimer Scotland

40. Northern Ireland • No formal government strategy agreed yet • Huge investment in staff training and education • Demonstrable increase in diagnosis and improvement in care

41. Wales • Not always easy to disentangle from English policies in the past

43. What has really worked • Improved diagnosis • Bringing health and social care staff up to the right level of knowledge • Improved early diagnostic support • Work in acute hospital settings

44. Discussion