Dementia: muddling along?

Steve IliffeProfessor of Primary Care for Older People

University College London

Kent Academic Primary Care UnitWednesday June 10th 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)

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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

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Is dementia increasing or decreasing?

• Later-born populations have a lower risk of prevalent dementia than those born earlier in the past century.

• CFAS1 predicted prevalence in 65+ population of 8.3% in 2011

• CFAS2 found 6.5%

Matthews FE et al Medical Research Council Cognitive Function and Ageing Collaboration. Lancet. 2013 Oct 26;382(9902):1405-12

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More evidence of declining prevalence

• US Framingham study 5 year waves: 1st 17% reduction, 2nd 32% reduction, 3rd 42%

• German AOK : 2004/7 – 2007/10 26% fall in incidence

• Spain, Sweden, Netherlands

World Alzheimer’s Report 2014

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Recognition

How do you know you are cognitively normal?

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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

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Global assessment ~ early dementia

Memory Loss of memory for recent events

Orientation Variable disorientation in time & place

Judgement & problem-solving

Some difficulty with complex problems

Outside home Engaged in some activities but not independently: may appear ‘normal’

At home More difficult tasks & hobbies abandoned

Personal care Needs some prompting8

Survival with dementia

• 4.5 years from symptom onsetXie J et al BMJ 2008; 336: 258-262

• 3.5 years from diagnosisRait et al, 2010 Aug 5;341:c3584. doi: 10.1136/bmj.c3584.

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Time

Global cognitive functioning

Normal ageing

Linguistic skill and general intelligence decline over decades

AB

CD

Dementia trajectory

E

Symptomatic but pre-diagnostic phase with brain compensation occurring, over several years Symptomatic & post-

diagnosis phase, with progressive decline over years

D1

D2

Cognitive impairment & dementia

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Subjective memory complaints

• Strongly associated with depression• Not the ‘worried well’: QoL 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

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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 85s

Larrabee & Crook Int Psychogeriatrics 1994; 6(01): 95-104

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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: c1425

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NICE/SCIE Guidelines 2006: recognition

• Informant history• Cognitive function tests• Blood screen (FBC, thyroid function)• Scanning

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Cognitive assessment

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

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GPCog 1

1. GPCOG measures both memory and executive function1,2

2. Sensitivity 85%, specificity 86% in the detection of dementia1

3. More sensitive at detecting dementia than the MMSE2

4. Suitable for use in primary care3-6

5. GPCOG patient interview + informant interview

1. Brodaty H et al. J Am Geriatr Soc 2002; 50(3): 530-534. 2. EuroCoDe 2009. http://www.alzheimer-europe.org/Our-Research/European Collaboration-on-Dementia/Diagnosis-and-treatment-of-dementia2/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.

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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

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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?

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Verbal Fluency Test

• The animal fluency test requires the patients to name as many items as they can in one minute1

• Naming less than 15 novel items is indicative of AD1 • Measures semantic fluency1

• Can be used in a primary care setting2

• Sensitivity 87% and specificity 96% in the detection of AD1

• 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.

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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

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Time

Global cognitive functioning

Normal ageing

Linguistic skill and general intelligence decline over decades

AB

CD

Dementia trajectory

E

Symptomatic but pre-diagnostic phase with brain compensation occurring, over several years Symptomatic & post-

diagnosis phase, with progressive decline over years

D1

D2

Cognitive impairment & dementia

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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]

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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.

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Psychosocial interventions 2

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

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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

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BPSD consequences

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

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BPSD- behavioural symptoms

most common common less common

•Apathy•Aggression•Wandering(aka walking)•Restlessness•Eating problems

•Agitation•Disinhibition•Pacing•Screaming•Sundowning

•Crying•Mannerisms

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BPSD- psychological symptoms

most common common less common

•Depression•Anxiety•Insomnia

•Delusions•Hallucinations

•Misidentification

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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

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BPSD management 2

• Drug treatment– Last resort– Should target specific symptoms– Specialist initiation– Regular review

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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;

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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).

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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)

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Dementia syndrome: Core business for general practice

• Continuity of contact• Population reach• Pattern recognition• Problem solving not protocol driven• Systematised care

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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

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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.uk36