1. www.england.nhs.uk Do memory problems matter? "High Quality Care for All, Now and for Future Generations"

2. www.england.nhs.uk Dementia Diagnosis - Why is it important Dr Sara Humphrey GP Westcliffe Medical Practice GP with a Special Interest in Older People-BTHFT Clinical Specialty Lead Older People & Stroke Bradford District & City CCGs GP Advisor Yorkshire & Humber Dementia SCN 16/9/15

3. www.england.nhs.uk Content of the Session What is Dementia What is the The National Picture? What are the National Drivers? Where are we now in Bradford? Why is diagnosis important? How to make a diagnosis in Established Dementia Patient Centered Care and Care Planning Advance Care Planning End of Life Care Carer Support Research "High Quality Care for All, Now and for Future Generations"

4. www.england.nhs.uk What is Dementia ?

5. www.england.nhs.uk It is the gradual loss of nerve cells in the brain and as they can not be replaced it is progressive and incurable The word Dementia just describes the collection of symptoms and is an umbrella term to cover all brain diseases that affect the brain in this way i.e. Alzheimer's and Vascular Dementia Dementia is not a normal, natural part of growing older What is Dementia ?

6. www.england.nhs.uk For a person to be diagnosed with dementia, they need to have a problem with more than one of the following: Memory Communication The ability to see the world as others do The ability to carry out practical everyday tasks The ability to plan a course of action Problems with the control of some behaviours These problems need to be sufficiently severe to have an impact on the person’s life. What is Dementia ?

7. www.england.nhs.uk The term Mild Cognitive Impairment (MCI) is used when an individual has difficulty remembering things or thinking clearly but the symptoms are not severe enough to warrant the diagnosis of dementia. Only some individuals with MCI will go on to develop dementia. What is Mild Cognitive Impairment?

8. www.england.nhs.uk What is the National Picture?

9. www.england.nhs.uk Dementia is under diagnosed 850,000 people in the UK have dementia (Alzheimer’s Society, 2014) We know that a third of patients remain undiagnosed!

10. www.england.nhs.uk We are slowly improving! 2009 (England) o 31% of people with dementia registered on GP dementia lists Nat Dementia Strategy 2009 2012 (UK) o 41% of people who are living with dementia have a diagnosis o Increase of 2% since 2011 o Considerable nationwide variation Alz Soc 2012 Jan 2015 (UK) o HSCIC data shows we are now at 59% o Increase of 18% in 2 years

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12. What are the National Drivers?

13. www.england.nhs.uk National Dementia Strategy 2009 5 year plan 17 interlinked objectives £150million extra funding Key themes Improving awareness Early and better diagnosis Improved quality of care Delivering the Strategy

14. www.england.nhs.uk Prime Minister’s challenge on dementia 2012

15. www.england.nhs.uk Awareness Key role of GPs Post diagnostic support Information, advice, carers Access to diagnosis Staff training Dementia Institute Dementia Friends/ businesses Research I million dementia friends Highest diagnosis rate

16. www.england.nhs.uk Where are we now in Bradford?

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21. Why is a diagnosis important?

22. www.england.nhs.uk Patients and their Carers want it! “It was a huge relief…right thank goodness now we’ve got a diagnosis, now I know what I’m dealing with and I’ll cope with it” “It’s an illness, it’s a terminal illness as well you know, nobody gets better from it, and it isn’t treated like that with the NHS is it, unfortunately…if it was cancer it would be different, you know” “Absolutely instead of being really really aggravated you become empathic on diagnosis” Source: Dementia in Leeds Evaluation Project, 2013

23. www.england.nhs.uk Why is it important for the NHS and LA We spend £23 Billion a year as a society and we can spend this money more effectively rather than on expensive crisis interventions Crisis presentations Care Home Admission ( or delay them) Reduce Emergency Admissions and readmissions to Hospital Reduce hospital Length of Stay Spend the money saved on more meaningful support

24. www.england.nhs.uk YES even at a late stage it has Value 1.Allows Advance Care Planning between you,the patient and families 2.Allows good Patient Centered Care & Care Planning esp around Prevention of Delirium 3.Reduces Unplanned Emergency Admissions 4.Helps plan for good Palliative Care and End of Life 5.Prompts us to consider the MCA and DoLs 6.Helps you to support Carers Does it matter in Care Homes?

25. www.england.nhs.uk How to make a diagnosis in Established Dementia ?

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28. How can we make a difference in Care Homes?

29. www.england.nhs.uk Person-centred care focuses on the individual's personal needs, wants, desires and goals so that they become central to the care process. This can mean putting the person's needs and life style choices, as they define them, above those identified as priorities by health and social care professionals. Person-centred care promotes the importance of relationships that are important to the person What is patient Centered Care?

30. www.england.nhs.uk  I have personal choice and control over the decisions that affect me.  I know that services are designed around me, my needs and my carer’s needs.  I have support that helps me live my life.  I have the knowledge to get what I need.  I live in an enabling and supportive environment where I feel valued and understood.  I have a sense of belonging and of being a valued part of family, community and civic life.  I am confident my end of life wishes will be respected. I can expect a good death.  I know that there is research going on which will deliver a better life for people with dementia, and I know how I can contribute to it. http://www.dementiaaction.org.uk/ The ‘I’ Statements

31. www.england.nhs.uk An agreement between a patient & Health Care profession on how to manage the patient’s day to day health care It can be a written document or something recorded in your patient notes. It is about the patients personal needs, wants, desires and goals It should cover what we know makes a difference to people’s lives What is Care Planning?

32. www.england.nhs.uk Dementia QOF 2015/16

33. www.england.nhs.uk Physical and Emotional Health Medication Reducing Falls and Delirium Risks and Behaviours that challenge Advance Care Planning-DNA CPR etc Gold Standard Framework Carer support What do you need to consider during care planning?

34. www.england.nhs.uk Medication

35. www.england.nhs.uk Haloperidol Olanzapine Queltiapine Risperidone Clozapine What are the common antipsychotics? What’s the problem? -Sedation -masks Pain and Delirium -increased Strokes -increased Deaths

36. www.england.nhs.uk Donepezil (Aricept) Galantamine Rivastigmine What are the Anticholinesterase Inhibitors? What are the side effects? -Diarrhoea -Headaches -Tiredness Check BP and Pulse-if low may need to consider stopping

37. www.england.nhs.uk Memantidine (antagonist NMDA receptor) What else may be prescribed? What are the side effects? -Headaches -Dizziness -Drowsiness -Constipation -Depression

38. www.england.nhs.uk Delirium

39. www.england.nhs.uk Training available through Care Home Liaison Service delivered as three x one hour sessions Training Booklet Get support from your local Care Home Liaison Service and CMHT Delirium and Behaviors that challenge?

40. www.england.nhs.uk A discussion in which you may choose to express some views, preferences and wishes about your future care. Explore your options Identify your wishes and preferences Refusing specific treatment, if you wish to Ask someone to speak for you Appoint someone to make decisions for you using a Lasting Power of Attorney Let people know your wishes Advance Care Planning

41. www.england.nhs.uk Advance care planning is a process of discussion between you and those who provide care for you, for example your nurses, doctors, care home manager or family members. Where patients have severe Dementia and may lack the capacity to make decisions on their own and then it is about ‘Best Interest ‘discussions Advance Care Planning

42. www.england.nhs.uk A guided discussion Can be undertaken by any qualified person Discussions about refusal of treatment or DNA CPR need to be had with a suitably qualified practitioner and you may need to consider the Mental Capacity of the patient in the discussions It needs updating if the patient has a significant change of circumstance, new illness or is palliative. Patients hold the ACP and the summary goes on System One Patient can change their minds! Advance Care Planning

43. www.england.nhs.uk http://www.palliativecare.bradford.nhs.uk/Documents/ Advance%20care%20plan%20booklet%20v.2%20No v%202014.pdfhttp://www.palliativecare.bradford.nhs.uk/Documents/ Advance%20care%20plan%20booklet%20v.2%20No v%202014.pdf Also on System One Access to the Y&H Advanced Care Plan document

44. www.england.nhs.uk Dementia: A long and unpredictable condition

45. www.england.nhs.uk Dementia: A long and unpredictable condition People with Alzheimer’s have been known to live for up to 10 years after the initial diagnosis, although this depends on the age when the diagnosis is received. People diagnosed with fronto-temporal dementia can expect to live between six and eight years While people with dementia with Lewy bodies can live between six and 12 years Those diagnosed with vascular dementia can expect to live a shorter length of time after diagnosis – approximately five years

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47. How do stage the disease?

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49. How do we know when people are reaching the end of their life?

50. www.england.nhs.uk There are three ways in which people with dementia die (Cox and Cook, 2002). People may die from the complications arising from end-stage dementia. People may be in the early stages of dementia and die from another illness (eg cancer). People may die with a mix of problems. Dementia may not be the main cause of death, but it interacts with other conditions and can complicate and worsen them. Dying and Dementia

51. www.england.nhs.uk A study of nursing home deaths found that most people with dementia were given a prognosis of more than six months, but 71% of these people died within the six month period How do we know when people are reaching the end of their life from Dementia ?

52. www.england.nhs.uk Triggers to consider that indicate that someone is entering a later stage are:  Unable to walk without assistance and Urinary and faecal incontinence, and No consistently meaningful conversation and Unable to do Activities of Daily Living (ADL) Barthel score <3 Plus any of the following: Weight loss Urinary tract Infection Severe pressures sores – stage three or four Recurrent fever Reduced oral intake Aspiration pneumonia GSF Prognostic Indicators

53. www.england.nhs.uk Identify the Carers of your residents and advise then to see their GP practice for a Carers assessment Involve them in making discussions about Advance Care Plans and Palliative Care Tell them about support to help them cope with the change in relationships,approaching End of Life Care etc How do I support Carers?

54. www.england.nhs.uk www.Dementiacarer.net Carers Resource Alzheimer’s Society Caring and Sharing –Bradford Relate What resources are out there?

55. www.england.nhs.uk Final thoughts!

56. www.england.nhs.uk How can you get involved? Dementia Friends

57. www.england.nhs.uk Dementia Research Patients in clinical trials, less than 1%, to 4.5% www.JoinDementiaResearch.nihr.ac.uk

58. www.england.nhs.uk sara.humphrey@bradford.nhs.uk (Clinical Guidance)sara.humphrey@bradford.nhs.uk Thank You!