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THE PROBLEM WITH MEMORY Dr Gillian Collighan 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) 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 ) 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 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 WHY DO WE MISS THE DIAGNOSIS? 1. Heterogeneity of disease and presentation 2. Screening tools too blunt and memory focussed 3. Patient factors 4. Problems with the relatives and informant history 5. Social factors 6. Medical profession attitudes 7. Problems within secondary care PREVALENCE OF DEMENTIA SUBTYPES IN OVER 65’S by diagnosis Alzheimer’s Society PREVALENCE OF DEMENTIA SUBTYPES IN OVER 65’S By Pathology Alzheimer's Disease 60% Vascular 20% Lewy Body 15%-20% SUBTYPES OF ALZHEIMER’S •Amnesic Type Alzheimer’s •Aphasic (Logopenic) Type Alzheimer’s •Frontal Type Alzheimer’s •Posterior Cortical Atrophy Type Alzheimer’s DEMENTIA Types of dementia Cortical Subcortical Mixed CORTICAL DEMENTIA Alzheimer’s •Presents with degrees of amnesia, aphasia, apraxia and agnosia •Memory, language, skills, geographical disorientation 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 FRONTAL/EXECUTIVE DYSFUNCTION 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 VASCULAR COGNITIVE IMPAIRMENT AND SMALL VESSEL DISEASE •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 LEWY BODY DEMENTIA •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 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 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 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 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 PHYSICIAN ATTITUDES •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 ATTITUDES IN SECONDARY CARE •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 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 CHRONIC ILLNESS •Parkinson’s Disease •REM Sleep Disorder •Multiple Sclerosis •Motor Neurone Disease •Learning Disability •Diabetes •Cardiovascular Disease BEHAVIOURAL AND PSYCHOLOGICAL SYMPTOMS OF DEMENTIA (BPSD) Main subtypes; •Physically aggressive behaviour •Physically non-aggressive •Verbally non-aggressive •Verbally aggressive •Psychosis related behaviour •Mood related behaviour REPORTED FREQUENCY OF BPSD Perceptual •Delusions 20–73% •Misidentifications 23–50% •Hallucinations 15–49% Affective •Depression up to 80% •Mania 3–15% (Finkal et al 1998) BEHAVIOURAL AND PSYCHOLOGICAL SYMPTOMS OF DEMENTIA •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 ASSESSMENT OF BPSD •Various rating scales •Underlying dementia diagnosis and severity •Psychological and psychosocial assessment • Physical health problems, excluding delirium •Review of medication ASSESSMENT OF BPSD •Charting of behaviour (ABC) •Assessment of environment •Assessment of communication and carer interaction •Assessment of safety MANAGEMENT OF BPSD •Psychological •Behavioural •Environmental •Pharmacological PHARMACOLOGICAL INTERVENTIONS-DRUGS USED •Antidepressants •Benzodiazepines •Acetyl cholinesterase inhibitors •Memantine NMDA receptor inhibitors •Antipsychotics UNDER SPECIAL CONDITIONS SEVERE BPSD-WHEN TO GIVE MEDICATION •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 PHARMACOLOGICAL INTERVENTION •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 •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 ANTIPSYCHOTIC USE IN DELIRIUM •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 BPSD AND CAPACITY •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 THE END Community Memory Assessment Service Helen Whight: Community Services Manager, NSFT Karen Blades: IESCCG Clinical Lead for Dementia Remodeling the Memory Assessment Service Patient Feedback about the Current Service • The process of memory assessment takes too long • That it can be difficult to get to the offices where the memory assessment specialists are based • The pathway is confusing with unclear steps and processes External Factors • National drive to achieve 67 per cent diagnosis rate • Achievement of local targets has a financial reward (Quality Premium) IESCCG Response • Increased investment in memory assessment • Working with NSFT to remodel the service to offer shorter pathways in primary care locations delivered by primary and secondary care clinicians Principles of Community Memory Assessment • What It Means for Patients and Families • • • • • Working towards a 6 week referral to diagnosis pathway Appointments in primary care settings The right appointments with the right clinician in the right sequence Follow up appointment with dementia specialist after diagnosis Increased capacity, providing up to 1500 assessments per annum What it Means for Primary Care • • • • Memory assessment clinics hosted in primary care venues Lead GPs from 10 practices working alongside consultants to diagnose dementia Specialist dementia practitioners (nurses and OTs) providing assessment & advice Clear referral pathways and criteria What it Means for NSFT • NSFT contracted to deliver the service • Working in partnership with primary care to deliver the service, supporting and working with lead GPs and working with practices to host the clinics 39 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. Patient Pathway Primary Care Screening, Tests and Referral CMAS MDT Triage Dementia Practitioner Assessment Additional Tests, including CT Scan Diagnosis Appointment with Consultant or Lead GP Follow Up Appointment PostDiagnosis 6 Week Target from Referral to Diagnosis How to Refer to the Service • Referral Requirements • There is no change to the screening, bloods and other information required to make a referral Referral Process • SystmOne practices will be able to make a SystmOne referral, if the patient consents. This will enable data sharing and pull data through to the referral template • It will be possible to continue using a referral form, which can be emailed securely to NSFT Diagnosis Reporting • A letter will be sent confirming the outcome from the diagnosis • SystmOne Practices will be able to see the outcome of the assessment and diagnosis (if the patient consents) 42 Referral Form • • • • • • 43 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 prepopulated Location of template can be managed by each practice Alternatively secure email to CMAS. Referrals made to Access and Assessment will be sent on Distribution of Lead GP Practices Leiston Stowmarket Orchard St Hadleigh Debenham Barrack Lane Ravenswood A143 Diss Eye A14 Bury St Edmund s A12 A140 Debenham Stowmarket Wickham Market Leiston Bildesto n Sudbury Hadleigh Negotiations with a further three practices are ongoing Ravenswood Felixstowe Ipswich IDT Central IDT Coastal IDT Timescales 2014 Timescales • June: • Training, development and preparation • July: • Launch of practitioner assessments in primary care • SystmOne referral process available • August: • Launch of diagnosis clinics in primary care • Communications and publicity