Living well with dementia: more timely diagnosis and early intervention Louise Robinson Professor of Primary Care and Ageing RCGP National Clinical Champion for Dementia

Dementia: future trends Dementia UK 2007 –2006: 700,000 with dementia in UK –2050: 1.7 million (156% rise) World Alzheimer’s Report 2010: –2010: 65.7 million world wide – million world wide WHO Global Burden of Disease –Dementia = greatest % (11%) of all years lived with disability –2/3 of people with dementia live in the community

Diagnosis: UK practice National Audit Office 2008/2010 Key findings for patients –Time to diagnosis twice as long as some European countries (Waldemar et al 2007) –% people on anti-dementia drugs in bottom 1/3 –Diagnosis poorly communicated Key findings for primary care –GP survey: “widely held perception…..little can be done” –31% GPs “ sufficient training to diagnose/manage dementia”

Diagnosis: What GPs are meant to do! NICE guidance (2006) Primary care History (carer assessment) Examination Cognitive assessment (MMSE, GPCOG) Blood screen Referral for specialist assessment Neuropsychological testing Imaging (MRI, CT)

Dementia diagnosis: What GPs actually do!

Timely diagnosis: Challenges Policy: NICE guidance on dementia drugs (NICE 2006; 2011) Attitudes/awareness Normal ageing “Mild Cognitive Impairment” GP attitudes/confidence (NAO 2008; Ahmad et al 2010) Knowledge GP overall knowledge of dementia (Ahmad et al 2010) “Watchful waiting” process (Bamford et al 2007) Skills Cognitive assessment tools in primary care (Fisher 2007) Saying the D word (Bamford et al 2004)

Good quality, earlier diagnosis… Enhance knowledge of dementia Identify people who need referral Evidence based care Improve specific skills Assessment of cognition and memory Communication skills: saying the D word Primary/secondary care interface –Timely referral for specialist assessment –Access to treatment and support Change awareness/attitudes Public and professional National Dementia Strategy (2009)

Dementia: 5 tips for excellence in practice Assessment and earlier recognition –1) Knowledge of dementia signs/symptoms –2) Assess 3Cs: Carer, Cognition, Capabilities Timely diagnosis and early intervention –3) Refer: specialist assessment (memory clinic) –4) Diagnostic disclosure: shared responsibility –5) Early intervention: drug/non-drug treatment Carer support (and carer makes 3!)

1. Dementia: signs & symptoms Early stage (MMSE 24 or <) Memory, decision-making, confusion, personality, speech –i.e normal ageing/ depression/anxiety Middle stage (MMSE 20 or <) Memory worsens, difficulties with ADL, BPSD, communication problems, safety risks Late stage Frailty, immobility, swallowing problems, malnutrition, recurrent infections

Professional knowledge Professional development RCGP e-learning ( –Care of older people: 2 dementia modules BMJ/Alzheimer’s Society –E-Learning modules; Primary care ‘Tool Box’ Dementia Information Portal

Care of People with Dementia - Page 1 Session Overview - Mandatory Session ID GPS_09_010 Module Older Adults Curriculum 9 Care of Older Adults Session Type Learn and Reflect Description This session is designed to provide an overview of the assessment of memory problems in primary care and the epidemiology and diagnosis of dementia. Duration 25 min Author(s) Emma Vardy, Louise Robinson GPS_09_010_01_01_bg

2. Skills training Carer history: listen to family Listen to the carer (Bamford et al 2007) Talking to people with dementia (RCGP) Assess cognition Mini Mental State Exam: long; copyright issues ? Other options (NICE/SCIE 2006) –GP-COG –Abbreviated Mental Test Score DEMENTIA - TIMELY DIAGNOSIS (CONVERSATIONS WITH PATIENTS AND CARERS)

GP-COG (Brodaty et al, JAGS 2002; 50: ) Name and Address: for subsequent recall test Time/ Orientation: what is the date? Clock Drawing – mark in numbers; mark hands to show Information: Can you tell me something that happened in the news recently? Recall: What was the name and address I asked you to remember? Total correct: out of 9 Score 9, no significant cognitive impairment Scores 5-8, more information required. Go to informant (carer) section. Score 0-4, cognitive impairment is indicated. Refer for investigations.

Abbreviated MTS 1. Age 2. Time: correct to nearest hour without checking 3. Address: give address and check registration; check memory at end of test 4. Month: exact 5. Year: exact – previous year allowed in Jan/Feb 6. Location name: type of place or area of town 7. DOB: exact 8. Start of WW1: exact 9. Name of present monarch: exact 10. Count backwards from 20 – 1 SCORE: 8-10: Normal; 7 probably abnormal; <7 abnormal ADD IN CLOCK DRAWING TOO

3. Refer: specialist assessment Memory clinic in every town! Evidence base: Ames et al 1999: better QOL for carers Croydon memory clinic (Bannerjee) : clinically and cost effective Royal College Psychiatry: National memory clinic accreditation: 53 UK clinics

Disclosure of diagnosis (4) Shared responsibility Preparing the ground……role of GP Ideas, concerns.. What are you worried this might be? Discuss possible diagnosis.... Exploring the D word Explain the assessment process – realistic expectations Highlight complexity of diagnostic process Early intervention (5) Information provision: Alzheimer’s Society Drug/non - drug interventions e.g. cognitive rehabilitation Psychological therapies: difficulty adjusting to diagnosis Future care planning: Power of attorney

5. Early intervention: drugs Dementia drugs: Review of NICE technology appraisal guidance 111 Donepezil, galantamine, rivastigmine –mild to moderate Alzheimer’s disease under all of the conditions specified in 1.3 and 1.4. Memantine and Alzheimer’s disease –moderate Alzheimer’s disease who are intolerant of or have a contraindication to AChE inhibitors or severe Alzheimer’s disease.

5. Non drug interventions World Alzheimer Report 2011 Dispel myth..something can be done! Early interventions: patient + carer Cognitive function: memory programmes Depression treatment Reframing dementia: cognitive rehabilitation Carer interventions Service models Collaborative care approach: more holistic, integrated care

Awareness raising Alzheimer’s Society National Dementia Strategy England National Dementia Clinical Lead National Dementia Alliance Alzheimer's Society led >50 organisations committed 5 year programme with yearly outcomes

Earlier diagnosis

Raising awareness and understanding Early diagnosis and support O1 public information campaign O2 memory services O3 information for people with dementia and carers O4 continuity of support for people with dementia and carers O8 improved care in general hospitals O6 improved community personal support O7 implementing carer’s strategy for people with dementia making the change O13 workforce competencies, development and training O14 joint local commissioning strategy and world class commissioning O15 performance monitoring and evaluation including inspection O12 improved EOLC O5 peer support for people with dementia and carers O10 housing including telecare O11 improved care home care O9 improved intermediate care for dementia O16 research Living well with dementia

NDS: Implementation priorities Quality outcomes for dementia: Good quality early diagnosis Living well with dementia in care homes Improved quality of care in general hospitals Reduced prescribing of anti-psychotics Carer assessment and support

NDS England: outputs GP commissioning packs (2011) Diagnosis and early intervention Care in hospitals Living well in the community Anti-psychotic drug use Care pathway: Optimising the management of behavioural problems in dementia (2011) National annual primary care audit

NDS England: issues London centric Regional dissemination/networks Scottish NDS: regional dementia champions Timing.. Political. Funding Lack of sustained national commitment? Lessons from other countries?