The Problem with Memory

1. The Problem with Memory Dr Gillian Collighan

2. Overview • The main problems at the beginning, and at the end of the dementia pathway • Present detection rate • Why is detection rate so low • Red Flags for dementia • Behavioural and Psychological Symptoms of Dementia (BPSD)

3. Key Facts • One in three people over the age of 65 will end their lives with dementia • Only 48% of people living with dementia, living in the UK ever receive a diagnosis • Diagnosis rates vary from as low as 35% in Southwest England, • to over 70% in parts of Scotland and Northern Ireland • Without a diagnosis, people with dementia cannot receive the support, information and treatment that they need to live well with dementia • State of the Nation Report ( DOH November 2013)

4. Dementia Diagnosis Rates Locally • NHS East Suffolk and Ipswich CCG 46.09% • NHS West Suffolk CCG 41.84% • NHS West Norfolk CCG 34.9% • NHS Norwich South CCG 43.85% • NHS North Norfolk CCG 42.6% • NHS Great Yarmouth and Waveney CCG 49.22% • Data: 2012/13, re-baselined from pre-April 2013 PCT data

5. The National Goal set by NHS England • Set to improve diagnosis rates, so that by March 2015 2/3rds of the estimated number of people with dementia should receive a diagnosis of dementia . • From 2013/2014 an enhanced service contract will help improve diagnosis in high risk groups, cardiovascular risk, long term neurological conditions, and people with learning disabilities

6. Heterogeneity of disease and presentation Screening tools too blunt and memory focussed Patient factors Problems with the relatives and informant history Social factors Medical profession attitudes Problems within secondary care WHY DO WE MISS THE DIAGNOSIS?

7. PREVALENCE OF DEMENTIA SUBTYPES IN OVER 65’S by diagnosisAlzheimer’s Society

8. Alzheimer's Disease 60% Vascular 20% Lewy Body 15%-20% PREVALENCE OF DEMENTIA SUBTYPES IN OVER 65’S By Pathology

9. Subtypes of Alzheimer’s • Amnesic Type Alzheimer’s • Aphasic (Logopenic) Type Alzheimer’s • Frontal Type Alzheimer’s • Posterior Cortical Atrophy Type Alzheimer’s

10. Types of dementia Cortical Subcortical Mixed DEMENTIA

11. Cortical dementia • Alzheimer’s • Presents with degrees of amnesia, aphasia, apraxia and agnosia • Memory, language, skills, geographical disorientation

12. Subcortical dementia • Vascular Small Vessel Disease and Lewy Body/Parkinson's Disease • Slowing, lack of spontaneous movement, paucity of facial expression, • Difficulties in retrieval of words ‘tip of the tongue’ • Executive Dysfunction -problems with high end skills • Problems with gait and continence as disease progresses

13. Five circuits link the subcortex to the frontal lobes Apathy and Inertia Attention and Concentration Reasoned Judgement Decision Making Sequenced Activities Error Checking LOSS OF INSIGHT SOCIAL FAÇADE AND MEMORY FAIRLY GOOD FRONTAL/EXECUTIVE DYSFUNCTION

14. Traditionally Multi infarct dementia has held centre stage Commonest vascular dementia in memory clinics is small vessel disease Spectrum disorder, ranges from vascular cognitive impairment (MCI) to full blown dementia Characterised by slowness, apathy, inertia, progressing to gait (Marche a petit pas) and continence difficulties Often have marked executive dysfunction VASCULAR COGNITIVE IMPAIRMENT AND SMALL VESSEL DISEASE

15. May present with subtle cognitive symptoms Slowing, ‘tip of the tongue’, apathy and inertia Poverty of facial expression and spontaneous movement- no tremor Visual hallucinations may not be apparent initially Additional clues-REM sleep disorder, anosmia, often long history of constipation or IBS symptoms, frequent mood disorder predating other symptoms by years. Marked fluctuation from day to day Cognitive change will be picked up by MOCA and ACEIII LEWY BODY DEMENTIA

16. Common Screening tests • GPCOG- Tests memory and visuospatial skills • 6-CIT-Tests memory, orientation and mental manipulation • AMTS-Test of memory only • (Memory weighted tests designed to pick up Alzheimer’s) • MOCA-Tests memory, executive function and visuospatial • ACE-III-Tests memory, language, visuospatial and executive function

17. MISSED AND DELAYED DIAGNOSIS- PATIENT FACTORS • Loss of insight • Social façade maintained until late in the disease process • Patient less likely to present as disease progresses • PARTICULAR PROBLEMS WITH DELAYED DIAGNOSIS IF PATIENT HAS A PROBLEM WITH MOBILITY, EYESIGHT OR HEARING

18. THE SOCIALLY ISOLATED PATIENT • 1/3 of people with dementia live alone • Common from the age of 80 years onwards • Partner has predeceased them • May have no children, or little contact with them • Often present in crisis, as no-one to advocate on their behalf • Present in secondary care following falls and delirium

19. PROBLEMS WITH RELATIVES AND THE INFORMANT HISTORY • Relative may be more impaired than the patient • Spouse is the non-dominant partner, and cannot get the patient to attend clinic • Spouse is physically unwell and reliant on the patient • Spouse has always done everything so patient is not tested • Beliefs and assumptions that this is part of normal ageing • INVESTED INTEREST IN KEEPING THE PATIENT AT HOME/ OR DRIVING

20. Concern that telling the patient the diagnosis will upset them, and nothing can be done anyway Concern that post diagnostic support is insufficient Concern it may be time consuming PHYSICIAN ATTITUDES

21. PBR has changed the way we work Treat the presenting complaint only-tunnel vision Often recognised that patient is confused, but nothing done until third or fourth readmission Concern that onward referral for memory assessment will delay discharge There is now an enhanced Liaison Team and Dementia Intensive Support Team (DIST) in the General Hospital ATTITUDES IN SECONDARY CARE

22. RED FLAGS • Medication mix ups • Unexplained weight loss • Poor control of chronic illness • Episodes of delirium with minor insult • Post bereavement acopia • Late onset mood disorders

23. Parkinson’s Disease REM Sleep Disorder Multiple Sclerosis Motor Neurone Disease Learning Disability Diabetes Cardiovascular Disease CHRONIC ILLNESS

24. Main subtypes; Physically aggressive behaviour Physically non-aggressive Verbally non-aggressive Verbally aggressive Psychosis related behaviour Mood related behaviour BEHAVIOURAL AND PSYCHOLOGICAL SYMPTOMS OF DEMENTIA (BPSD)

25. Perceptual Delusions 20–73% Misidentifications 23–50% Hallucinations 15–49% Affective Depression up to 80% Mania 3–15% (Finkal et al 1998) REPORTED FREQUENCY OF BPSD

26. 90% of dementia patients experience BPSD Mild to moderate BPSD has potentially reversible causes, often resolves within four weeks Delirium must be excluded Physical problems such as dehydration, pain, infection, electrolyte imbalances, constipation and polypharmacy BEHAVIOURAL AND PSYCHOLOGICAL SYMPTOMS OF DEMENTIA

27. Various rating scales Underlying dementia diagnosis and severity Psychological and psychosocial assessment Physical health problems, excluding delirium Review of medication ASSESSMENT OF BPSD

28. Charting of behaviour (ABC) Assessment of environment Assessment of communication and carer interaction Assessment of safety ASSESSMENT OF BPSD

29. Psychological Behavioural Environmental Pharmacological MANAGEMENT OF BPSD

30. Antidepressants Benzodiazepines Acetyl cholinesterase inhibitors Memantine NMDA receptor inhibitors Antipsychotics UNDER SPECIAL CONDITIONS PHARMACOLOGICAL INTERVENTIONS-DRUGS USED

31. Where there is significant distress to the individual, or aggression that results in significant risk to patient or others Where non-pharmacological treatments have failed It is required in order to assess and investigate patient for delirium –physical exam , BP, pulse and blood screen SEVERE BPSD-WHEN TO GIVE MEDICATION

32. Changes in cognition should be assessed and recorded Initial low dose and titrated upwards Treatment time limited and reviewed (every three months or according to clinical need) PHARMACOLOGICAL INTERVENTION

33. Risperidone antipsychotic of choice (NICE) for use in BPSD of Alzheimer's disease Treatment rationale and side effects should be discussed with patient and relatives Target symptoms must be described, and reviewed PHARMACOLOGICAL INTERVENTION

34. In hyperactive delirium patient can be very agitated In these cases Haloperidol or Olanzapine, and/or lorazepam are recommended (NICE) Important to decide whether you are dealing with delirium or BPSD as different Antipsychotics recommended ANTIPSYCHOTIC USE IN DELIRIUM

35. May not have capacity to consent to treatment Relevance to mental capacity act must be considered and documented When medication given need to consult with patient, relative and carers If covert medication is used this must follow local policy BPSD AND CAPACITY

36. THE END

37. Community Memory Assessment Service Helen Whight: Community Services Manager, NSFT Karen Blades: IESCCG Clinical Lead for Dementia

38. Remodeling the Memory Assessment Service

39. Principles of Community Memory Assessment

40. PATHWAY : KEY FEATURES In partnership with IESCCG, NSFT is working with GPs to establish 10 new locality clinics (referred to as Lead GPs) which are distributed across the region. The service will work alongside existing organisations, such as Age UK, Alzheimer’s Society, Suffolk Family Carers and Sue Ryder, to support dementia-related activities and initiatives and support people to access local provision. Specialist dementia practitioners, employed to deliver the service, will spend a good proportion of their time in GP Practices. This will enable them to raise awareness of dementia and improve the skills of practice staff in spotting early signs of dementia.

41. Patient Pathway 6 Week Target from Referral to Diagnosis

42. How to Refer to the Service

43. Referral Form • SystmOne Practices can use an online referral template • It can only be used if the patient consents to share their data with NSFT • If consent is given many of the fields are pre-populated • Location of template can be managed by each practice • Alternatively secure email to CMAS. • Referrals made to Access and Assessment will be sent on

44. Distribution of Lead GP Practices Ravenswood Leiston Stowmarket Orchard St Barrack Lane Hadleigh Debenham A143 Diss Eye A12 A140 A14 Bury St Edmunds Debenham Leiston Wickham Market Stowmarket Bildeston Hadleigh Coastal IDT Sudbury Ravenswood Negotiations with a further three practices are ongoing Felixstowe Ipswich IDT Central IDT

45. Timescales 2014