Dementia muddling along Steve Iliffe Professor of Primary

Dementia: muddling along? Steve Iliffe Professor of Primary Care for Older People University College London Kent Academic Primary Care Unit Wednesday June 10 th 2015

What is dementia? • A complex multi-factorial syndrome. Querfurth H , Laferla M Alzheimer’s Disease N. Engl J Med 2010; 362: 329 -44 • Memory loss plus one other impaired cognitive domain • No rocket science (except scanning) 2

Scale of the problem • Prevalence of dementia syndrome may double by 2040? • Costs of health & social care for people with dementia exceed those for cancer, heart disease and stroke combined Alzheimer’s Society 3

Is dementia increasing or decreasing? • Later-born populations have a lower risk of prevalent dementia than those born earlier in the past century. • CFAS 1 predicted prevalence in 65+ population of 8. 3% in 2011 • CFAS 2 found 6. 5% Matthews FE et al Medical Research Council Cognitive Function and Ageing Collaboration. Lancet. 2013 Oct 26; 382(9902): 1405 -12 4

More evidence of declining prevalence • US Framingham study 5 year waves: 1 st 17% reduction, 2 nd 32% reduction, 3 rd 42% • German AOK : 2004/7 – 2007/10 26% fall in incidence • Spain, Sweden, Netherlands World Alzheimer’s Report 2014 5

Recognition How do you know you are cognitively normal? 6

Global assessment ~ Normal HEALTHY Memory Occasional lapses Orientation Full in time, space & person Judgement & problem-solving Solves everyday problems Outside home Independent functioning At home Activities & interests maintained Personal care Fully capable Based on the Clinical Dementia Rating scale (CDR) Hughes CP et al A New Clinical Scale for the staging of Dementia Br J Psychiatry 1982; 140: 566 -572 7

Global assessment ~ early dementia Memory Loss of memory for recent events Orientation Variable disorientation in time & place Judgement & problemsolving Outside home Some difficulty with complex problems Engaged in some activities but not independently: may appear ‘normal’ At home More difficult tasks & hobbies abandoned Personal care Needs some prompting 8

Survival with dementia • 4. 5 years from symptom onset Xie J et al BMJ 2008; 336: 258 -262 • 3. 5 years from diagnosis Rait et al, 2010 Aug 5; 341: c 3584. doi: 10. 1136/bmj. c 3584 . 9

Cognitive impairment & dementia Global cognitive functioning Normal ageing A D 1 B Linguistic skill and general intelligence decline over decades D 2 C Symptomatic but pre-diagnostic phase with brain compensation occurring, over several years D E Symptomatic & post-diagnosis phase, with progressive decline over years Dementia trajectory Time 10

Subjective memory complaints • • • Strongly associated with depression Not the ‘worried well’: Qo. L low, service use high Do predict dementia Depression predicts dementia Screening for memory loss? (Only 18% of future dementia cases will be identified in the preclinical phase by investigating those who screen positive for memory complaints) Palmer et al BMJ. 2003 Feb 1; 326(7383): 245 11

The scale of subjective memory complaints • 60% of middle-aged people reported forgetfulness that hindered them significantly • 70% with SMC were very worried about it Commissaris et al Patient Education and Counselling 1998; 34(01): 25 -32 • 25 to 50% of older people • increases with age • 43% in people aged 65 -74, 88% in over 85 s Larrabee & Crook Int Psychogeriatrics 1994; 6(01): 95 -104 12

How do older people with SMC differ from their peers? • • Advanced age Female gender Depressed mood Anxious/phobic/obsessive personality Iliffe S & Pealing L Subjective memory complaints: a clinical review BMJ 2010: 340: c 1425 13

NICE/SCIE Guidelines 2006: recognition • • Informant history Cognitive function tests Blood screen (FBC, thyroid function) Scanning 14

Cognitive assessment • • • Mini-Mental State Examination (MMSE) 6 CIT GPCog TYM test Verbal fluency Clock drawing 15

GPCog 1 1. GPCOG measures both memory and executive function 1, 2 2. Sensitivity 85%, specificity 86% in the detection of dementia 1 3. More sensitive at detecting dementia than the MMSE 2 4. Suitable for use in primary care 3 -6 5. GPCOG patient interview + informant interview 1. Brodaty H et al. J Am Geriatr Soc 2002; 50(3): 530 -534. 2. Euro. Co. De 2009. http: //www. alzheimer-europe. org/Our. Research/European Collaboration-on-Dementia/Diagnosis-and-treatment-of-dementia 2/Assessment. 3. Lorentz WJ et al. Can J Psychiatry 2002; 47(8): 723 -733. 4. Milne A et al. Int Psychogeriatr 2008; 20(5): 911 -926. 5. Brodaty H et al. Am J Geriatr Psychiatry 2006; 14(5): 391 -400. 6. Ismail Z et al. Int J Geriatr Psychiatry 2010; 25(2): 111 -120. 16

GPCog patient interview 1. Name and address for subsequent recall test: 2. Time Orientation: What is the date? 3. Clock Drawing (visuospatial functioning) 4. Information: news event 5. Recall: Brodaty H et al. J Am Geriatr Soc 2002; 50(3): 530 -534 17

GPCog informant interview Difficulties: 1. Remembering things that have happened recently? 2. Recalling conversations a few days later? 3. Finding the right word? 4. With managing money (e. g. , paying bills, budgeting)? 5. Manage medication independently? 6. Using transport? 18

Verbal Fluency Test • The animal fluency test requires the patients to name as many items as they can in one minute 1 • Naming less than 15 novel items is indicative of AD 1 • Measures semantic fluency 1 • Can be used in a primary care setting 2 • Sensitivity 87% and specificity 96% in the detection of AD 1 • similar sensitivity and specificity to MMSE 1. Canning SJ et al. Neurology 2004; 62(4): 556 -562. 2. Kilada S et al. Alzheimer Dis Assoc Disord 2005; 19(1): 8 -16. 19

Clock drawing • Add the numbers, then the clock hands showing 10 past 11 • Any error in the first 3 quadrants = -1 • Any error in the last quadrant = -4 • A score of -4 or more suggests dementia syndrome 20

Cognitive impairment & dementia Global cognitive functioning Normal ageing A D 1 B Linguistic skill and general intelligence decline over decades D 2 C Symptomatic but pre-diagnostic phase with brain compensation occurring, over several years D E Symptomatic & post-diagnosis phase, with progressive decline over years Dementia trajectory Time 21

Psychosocial support • • • Regular doctor-initiated contact Review global assessment Manage co-morbidities Review support needed Carer’s health Robinson L et al for the DENDRON Primary Care Clinical Studies Group Primary care & dementia: 2 Case management, carer support & the management of behavioural and psychological symptoms IJGP 2009; Nov 27 [Epub ahead of print] 22

Psychosocial interventions 1 Need to overcome catastrophic thinking and depressive withdrawal: • Focussing on the individual and their family’ beliefs and attitudes about dementia Typical fears: • Other people ‘finding out’ the diagnosis, • Rapid deterioration in abilities, • Socially embarrassing behaviour; • Loss of involvement in life and care planning. 23

Psychosocial interventions 2 Reframing dementia as a disability • acknowledges anger • re-labelling of ‘stupidities’ as ‘difficulties’ • focus on things they still can do 24

Behavioural & Psychological Symptoms (BPSD) • Seen in: ≈40% of mild cognitive impairment ≈ 60% of patients in early stage of dementia • affects 90 -100% of patients with dementia at some point in the course of their illness • Gets more frequent and troublesome with advancing dementia 25

BPSD consequences • • • Associated with greater functional impairment Very distressing for individual & carers Institutional care Overmedication Elder abuse Associated with increased mortality 26

BPSD- behavioural symptoms most common • Apathy • Aggression • Wandering (aka walking) • Restlessness • Eating problems common • Agitation • Disinhibition • Pacing • Screaming • Sundowning less common • Crying • Mannerisms 27

BPSD- psychological symptoms most common • Depression • Anxiety • Insomnia common less common • Delusions • Misidentification • Hallucinations 28

BPSD management 1 P Physical Pain, infection A Activities of others Mis-interpretations of activities I Intrinsic Walking, stroking D Depression or delusion Hallucinations, delusions 29

BPSD management 2 • Drug treatment – – Last resort Should target specific symptoms Specialist initiation Regular review 30

End of Life care • Capacity to make decisions • Advance decisions • Co-morbidities (pain) Goodman C et al End of life care for community dwelling older people with dementia: an integrated review Int J Geriatric Psychiatr 2009; 31

Mental Capacity Always assume capacity, act in best interests, with least restriction. A person is thought to be unable to make specific decisions if he or she is unable to: • Understand the information relevant to the decision, • Retain that information, • Use that information to make a decision, • Communicate a decision (by any means). 32

Advance decisions An advance decision cannot be used to: • Refuse basic nursing care essential to comfort • Refuse the offer of food or drink by mouth • Refuse measures designed to maintain comfort − for example, painkillers • Demand treatment that a healthcare team considers inappropriate • Refuse treatment for mental disorder if the person is or is liable to be detained under the Mental Health Act 1983 • Ask for anything that is against the law (euthanasia) 33

Dementia syndrome: Core business for general practice • • • Continuity of contact Population reach Pattern recognition Problem solving not protocol driven Systematised care 34

What is the role of the Specialist? • Uncertain diagnosis, ‘red flag’ symptoms/signs, sub-typing • Access to treatments (Alzheimer’s disease) & support • Management problems: anti-psychotic drugs • Education 35

Thank you for listening! http: //www. journalslibrary. nihr. ac. uk/pgfar/volume-3/issue-3 EVIDEM Educational interventions in general practice Management of BPSD with exercise Continence management in dementia Assessing mental capacity End of Life care and dementia s. iliffe@ucl. ac. uk 36