Dementia – NICE Guideline NG97 Dec 2018 Barnet Federated GPs CEPN Event 11 th Sep 2019 

1. Dementia –NICE Guideline NG97 Dec 2018Barnet Federated GPs CEPN Event 11th Sep 2019 Dr. Robert Tobiansky Consultant Old Age Psychiatrist & Honorary Senior Clinical Lecturer Barnet, Enfield & Haringey Mental Health Trust

2. National Institute for Health and Care Excellence:Dementia -assessment, management and support for people • NG97 replaces CG42, ESUOM41 and partially TA217 • More than 400 pages • 136 recommendations and 16 appendices Concentrating on: • Person-centred care and support • Investigation (cognitive testing, imaging, biomarkers –Chapter 5) • Treatment (dementia drugs, other medications, Chapters 11 & 14) • Care coordination and staff training • How dementia impacts on care for other conditions • focus on areas where known variation in practice despite good evidence and where people with dementia need different care compared with people without dementia in the same situation

3. Person-centred emphasis Involve people living with dementia (and their families or carers where appropriate) in decision-making about their care, Including: • Their views/opinions • Provision of relevant oral and written information • Provide advice on driving • Signposting support in the community (including provision of a single named key health orsocial care professional) • Advance care planning

4. Diagnosis: Initial assessment in non-specialist settings • History: from patient and family/friend • Exclude reversible causes • Cognitive testing*: • use brief validated tools: eg 10-point cognitive screener (10-CS) (!?), 6CIT, Mini-cog, Memory Impairment Screen, Test your memory (TYM) * but don’t exclude dementia just based on cognitive testing • FunctionalActivities Questionnaire ( FAQ) for carer.

5. Diagnosis • Refer to specialist dementia diagnostic service • If reversible causes of cognitive impairment ruled out, including delirium, depression, sensory impairment (sight or hearing loss), or problem secondary to medications with increased anticholinergic burden • For subtype diagnosis

8. Diagnosis • If AD suspected include verbal episodic memory test • Consider neuropsychological testing (if unclear problem or question of subtype) • Consider structural imaging (unless dementia well established or subtype clear) • Consider further tests to help subtype diagnosis or management and use validated criteria for making the diagnosis

9. Neuroimaging in Dementia • Computed tomography (CT) • Magnetic resonance imaging (MRI) • Perfusion (HMPAO) SPECT • Glucose (FDG) PET • Dopamine (FP-CIT) SPECT (for suspected Lewy body dementia/ PD Dementia) • Amyloid (PIB, florbetapir, flutemetamol, flurbetaben) PET

10. Investigations if diagnosis uncertain If Alzheimer’s Disease suspected: • FDG-PET (fluorodeoxyglucose-positron emission tomography-CT), or perfusion SPECT (single-photon emission CT) if FDG-PET unavailable • Or cerebrospinal fluid ( CSF) for either total tau or total tau and phosphorylated-tau 181 and either amyloid beta β1–42 or amyloid β 1–42 and amyloid β 1–40 • NB the older a person is, the more likely they are to get a false positive

11. Investigations if diagnosis uncertain • If dementia with Lewy bodies is suspected, use 123I-FP-CIT SPECT (DAT scan) or if unavailable, consider 123I-MIBG cardiac scintigraphy. • If frontotemporal dementia is suspected, use FDG-PET or perfusion SPECT. • If vascular dementia (VaD) is suspected, use MRI or CT scan (if MRI contraindicated). • Do not rule out diagnosis if investigation negative • Consider genetic causes in young-onset

20. Standardised criteria for Dementia • Alzheimer’s Disease (typical, atypical, PCA) • Vascular Dementia (syndromes) • Dementia with Lewy Bodies (and parkinsons spectrum) • Frontotemporal Dementias (Primary Progressive Aphasia; semantic dementia, logopaenic dementia, bvFTD)

21. 1.2.12 Use validated criteria to guide clinical judgement when diagnosing dementia subtypes: • International consensus criteria for dementia with Lewy bodies • International FTD criteria for frontotemporal dementia (progressive non-fluent aphasia and semantic dementia) • International Frontotemporal Dementia Consortium criteria for behavioural variant frontotemporal dementia • NINDS-AIREN criteria (National Institute of Neurological Disorders and Stroke and Association Internationale pour la Recherché et l'Enseignement en Neurosciences) for vascular dementia • NIA criteria (National Institute on Aging) for Alzheimer's disease • Movement disorders Society criteria for Parkinson's disease dementia • International criteria for Creutzfeldt-Jakob disease.

22. Alzheimer’s Disease • NINCDS-ARDA McKhann 1984 well validated sensitivity 81% specificity 70% cf Post Mortem criteria • Updated 2011 NIA-AA (McKhann 2011)

23. McKhann et al 2011 AD Criteria • NIA-AA task group: revising the 1984 criteria for AD • criteria flexible enough to be used by both general healthcare providers without access to neuropsychological testing, advanced imaging, and CSF measures, and specialized investigators involved in research or in clinical trials • retained the framework of probable AD from the 1984 criteria • several changes in the clinical criteria for the diagnosis • Biomarker evidence was integrated into the diagnostic formulations for probable and possible AD dementia for use in research settings • The core clinical criteria for AD dementia will continue to be the cornerstone of the diagnosis in clinical practice, but biomarker evidence is expected to enhance the pathophysiological specificity of the diagnosis of AD dementia”

24. McKhann et al 2011 AD Criteria • 3 stages: • Pre-clinical asymptomatic • Prodromal/MCI • Clinical Dementia stage

25. McKhann et al 2011 AD Criteria

26. Vascular DementiaDiagnostic criteria for research studies: Report of the NINDS‐AIREN International Workshop* G. C. Román Neurology 1993

27. DLB: McKeith et al Neurology 2017

28. Classification of primary progressive aphasia and its variants. Neurology 2011 • classification of primary progressive aphasia (PPA) and its 3 main variants to improve the uniformity of case reporting and the reliability of research results • Criteria for the 3 variants of PPA: • nonfluent/agrammatic • Semantic • Logopenic • developed by an international group of PPA investigators to operationalize earlier published clinical descriptions for PPA • Patients first diagnosed with PPA and are then divided into clinical variants based on specific speech and language features characteristic of each subtype • Classification further specified as "imaging-supported" if the expected pattern of atrophy is found and "with definite pathology" if pathologic or genetic data are available

29. Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia Katya Rascovsky Brain 2011 • “Possible” behavioural variant frontotemporal dementia requires three of six clinically discriminating features (disinhibition, apathy/inertia, loss of sympathy/empathy, perseverative/compulsive behaviours, hyperorality and dysexecutive neuropsychological profile) • “Probable” bvFTD adds functional disability and characteristic neuroimaging • “Definite” requires histopathological confirmation or a pathogenic mutation.

31. Interventions • To promote cognition, independence and well-being • In mild-moderate dementia: • –consider group cognitive stimulation therapy • –group reminiscence therapy • –cognitive rehabilitation or occupational therapy to support functional ability. • Don’t offer acupuncture, ginseng, vitamin E or herbal formulations to treat dementia. • Don’t offer non-invasive brain stimulation to treat mild to moderate AD, except as part of a RCT.

32. Pharmacological Treatment • Pharmacological treatment for Alzheimer’s disease should be started on the advice of a clinician with specialist expertise in diagnosing and treating Alzheimer’s disease . • Once a decision has been made to start a cholinesterase inhibitor or memantine, the first prescription can be made in primary care!!! • Memantine can be added by a primary care physician to ChEI therapy for AD without the involvement of a specialist !!!

33. Pharmacological Treatment for AD • The 3 Cholinesterase inhibitors (ChEIs) are recommended as options for managing mild to moderate AD • Memantine is recommended for people with moderate AD intolerant to, or with a contraindication to ChEIs • Memantine is recommended for severe AD. • For people taking an ChEI consider memantine in addition if they have moderate disease; offer memantine in addition to a ChEI for severe disease • Don’t stop ChEIs in AD merely because of disease severity alone** Donepezil and transdermal rivastigmine are licensed (eg in the USA) for severe AD, and the UK DOMINO study supports this recommendation • Don’t offer antidiabetics, antihypertensives, statins, or NSAIDs to slow the progress of AD except as part of a RCT

34. Pharmacological treatment for DLB • Offer donepezil or rivastigmine to people with mild to moderate dementia with Lewy bodies • Only consider galantamine for people with mild to moderate dementia with Lewy bodies if donepezil and rivastigmine not tolerated • Consider memantine for people with dementia with Lewy bodies if ChEIs are either not tolerated or contraindicated

35. Pharmacological treatment for other dementias • Only consider ChEIs or memantine for people with vascular dementia if they have suspected comorbid AD, Parkinson’s disease dementia or dementia with Lewy bodies • Don’t offer ChEIs or memantine to people with frontotemporal dementia

36. Management of non-cognitive symptoms Agitation, aggression, distress and psychosis • Rule out reversible causes • Offer personalised activities to promote engagement, pleasure and interest • Only offer antipsychotics to people: at risk of harming themselves or others experiencing agitation, hallucinations or delusions causing them severe distress.

37. Managing non-cognitive symptoms Depression and anxiety • Consider psychological treatment for mild/moderate depression • Don’t routinely offer antidepressants, unless indicated for a pre-existing severe mental health problem Sleep problems • Don’t offer melatonin • Consider sleep management: sleep hygiene education, exposure to daylight, exercise and personalized activities

38. Other interventions For incontinence and symptoms of overactive bladder: • Consider mirabegron (to minimise cholinergic issues) To minimise sensory Impairment • Eye tests every 2 years • Consider referring people with MCI or dementia for a hearing assessment every 2 years if they have not previously been diagnosed with hearing impairment

39. Carer support • Offer carers of people living with dementia education and skills training interventions • Advise carers about their rights and how to get these • Advise on future planning • Be aware that carers’ interventions are probably most effective if provided as group sessions • Be aware that carers of people living with dementia are at an increased risk of depression

41. NICE Guidelines • Do they help? • NICE’s website credits the guidelines generally with improving outcomes for people using the NHS and other public health and social care services • But recent poll by Pulse Today • 76% of 515 GPs believe only “somewhat relevant” to their practice • Over 70% depart from NICE guidance at least once a month (10% ignore it daily) • Technology recommendations must be complied with and, although not legally binding, there is now some case law for them to become legally binding

42. Applying guidelines: • “Real life has so many permutations that can’t all be written into guidelines (and for which the evidence often doesn’t exist)” • Does the guideline apply to my patient? • Is the advice pragmatic? • Is it what my patient wants? • BMJ comment on guidelines -12 Feb 2019 (Matthew R) • Also absence of evidence is not necessarily evidence of absence

43. Dementia worldwide 2015 • 47 million PWD globally in 2015 • expected to reach 76 million in 2030 and 135 million by 2050 (triple by 2050) • Global cost est. in 2015 was US$818 billion • 85% costs family & social care not medical

44. Barnet (based on Dementia UK Report) • estimated c. 4400 people in Barnet have dementia • This is the single largest number of all London boroughs

45. Dementia UK report: 2007 • Est. 683,597 people with dementia in the UK. • represents one person in every 88 (1.1%) of UK population • total number of people with dementia in the UK is forecast to increase to 940,110 by 2021 and 1,735,087 by 2051, an increase of 38% over the next 15 years and 154% over the next 45 years. • Early onset dementia is comparatively rare, accounting for 2.2% of all people with dementia in the UK. • C. 15,034 people with early onset dementia (onset < 65 years) in the UK and 668,563 people with late onset dementia (onset > 65 years) Based on 2007 Percentages with current total populations: • Barnet = 1.15% pop 356000 PWD = 4094 • Enfield = 0.88% pop 300000 PWD = 2640 • Haringey= 0.54% pop 258900 PWD = 1398 • Camden= 0.7% pop 198020 PWD = 1386 • Islington= 0.51% pop 215000 PWD = 1096 • Harrow= 0.95% pop 243400 PWD = 2312

46. Specialist Mental Health Services for Older people in Barnet • Current Budget is c. 50% of 2008 budget • 1 Inpatient ward=The Oaks Chase Farm • CMHT base at Springwell Centre • DVs, Outpatient clinics • Memory Assessment service Springwell • MDT: Drs, CPNs, OT, SW, Psychology • Psychiatric liaison team @ Barnet Hospital

47. Barnet Memory Service • MSNAP accredited

48. Barnet care Homes • >85 care homes in LBB • 22% of Nursing Home residents have come from neighbouring boroughs • substantial demand on services