Core business for general practice: recognition of and response to dementia

1. Core business for general practice: recognition of and response to dementia Steve Iliffe Professor of Primary Care for Older People University College London Practice Based Commissioner, Brent PCT

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

3. Core business in general practice • Continuity of contact • Population reach • Pattern recognition • Problem solving not protocol driven • Systematised care

4. General practitioners.. • Lack confidence in diagnosis and management • Fear labelling and disabling their patients • Avoid recognising an untreatable disease • May think “nothing can be done”

5. Three questions • How would you rate your current care for people with dementia (good enough/satisfactory/needs substantial improvement)? • What do you think are the important quality markers in caring for people with dementia? (What would you want for yourself?) • What do you need to do to improve in the care of patients with dementia in your practice?

6. Dementia is uncommon GP with list of 2000 in demographically average area (6% prevalence) About 15 patients with dementia syndrome, roughly half not yet recognised 1 – 2 new cases per year Demography changing: over 80s (20% prevalence) Do uncommon problems need special solutions?

7. Dementia is not a disease • Syndrome (collection of symptoms) • Memory loss + one other form of cognitive loss, sufficient to impair functioning. • Sub-typing leads to diagnosis: Alzheimer’s, DLB, vascular dementia – different responses, including treatments • Does everybody with dementia syndrome need a sub-type?

8. Survival with dementia • Median 7.1 years with Alzheimer’s dementia, 3.9 years with vascular dementia. Fitzpatrick et al J Neurological Sciences 2005 • 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:c3584. doi: 10.1136/bmj.c3584.

9. Bad times coming? • PCTs facing 20% budget reduction over 5 years • Specialist service may not manage demand • Expansive development unlikely • Intensive development possible (but unpopular) • Skill & task transfer

10. 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

11. Cognitive impairment & dementia Global cognitive functioning Normal ageing A D1 B Linguistic skill and general intelligence decline over decades D2 C D Symptomatic but pre-diagnostic phase with brain compensation occurring, over several years E Symptomatic & post-diagnosis phase, with progressive decline over years Dementia trajectory Time

12. 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

13. 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

14. How do older people with SMC differ from their peers? • Advanced age • Female gender • Depressed mood • Anxious/phobic/obsessive personality • Educational attainment Iliffe S & Pealing L Subjective memory complaints: a clinical review BMJ 2010: 340: c1425

15. Cognitive impairment & dementia Global cognitive functioning Normal ageing A D1 B Linguistic skill and general intelligence decline over decades D2 C D Symptomatic but pre-diagnostic phase with brain compensation occurring, over several years E Symptomatic & post-diagnosis phase, with progressive decline over years Dementia trajectory Time

16. Recognition How do you know you are cognitively normal?

17. Global assessment ~ Normal 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

18. Global assessment ~ early dementia

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

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

21. 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

22. Verbal fluency • The verbal 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 ofAD1 • The animal fluency test is much quicker to administer than the MMSE, but similar in terms of sensitivity and specificity in the detection of dementia2 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.

23. Systematic follow-up: palliative care principles apply • BPSD • Case management • End of Life care & hospital admissions

24. 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]

25. Psychosocial interventions 1 Cognitive Behavioural Therapy (CBT) to overcome catastrophic thinking and depressive withdrawal: • Focussing on a patient’s beliefs and attitudes about dementia • Exploring unhelpful or inaccurate beliefs • Providing accurate verbal and written information Typical fears: • Other people ‘finding out’ the diagnosis, • Rapid deterioration in abilities, • Socially embarrassing behaviour; • Loss of involvement in life and care planning.

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

27. Carer support • Support reduces stress even if not used • Responses to carer role (Twigg & Atkins 1994): • Engulfment: help-seeking can be difficult • Balancing/boundaried: preserve own autonomy • Symbiotic: benefit from role, accept unthreatening help

28. 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

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

30. BPSD- behavioural symptoms

31. BPSD- psychological symptoms

32. BPSD 1

33. BPSD management 1

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

35. Case management PREVENT study (USA,2006) • Less BPSD • No difference in depression, cognitive status, or functional scores. • Carers showed less stress. • More primary care contacts, • No difference in hospital or nursing home admissions. Vickery trial (USA, 2006) • Improved quality of care, expensive

36. 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; Aug 17 (Epub ahead of print)

37. 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 or weigh that information as part of the process of making the decision, or • Communicate a decision (by any means).

38. Advance decisions An advance decision cannot be used to: • Refuse treatment if the person has capacity to give or refuse consent to it • Refuse basic nursing care essential to keep a person comfortable, such as washing, bathing and mouth care • Refuse the offer of food or drink by mouth • Refuse the use of measures solely 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 such as euthanasia or assisting someone in taking their own life.

39. Core business in general practice • Continuity of contact • Population reach • Pattern recognition • Problem solving not protocol driven • Systematised care

40. 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

41. Write your own educational prescription • How would you rate your current care for people with dementia (good enough/satisfactory/needs substantial improvement)? • What grounds or criteria is your rating based on? • What triggers your suspicion that a patient may be developing a dementia syndrome? • After diagnosis, what follow-up do you provide to people with dementia and their carers? • Do you prescribe cholinesterase inhibitors? Are you using a shared care protocol? • How effective are cholinesterase inhibitors? • What non-pharmacological alternatives do you have available to help your patients (and their carers) • What do you think are the important quality markers in caring for people with dementia? (What would you want for yourself?) • What would you like improve in the care of patients with dementia in your practice?

42. Thank you for listening! www.evidem.org.uk 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