The English experience of promoting dementia recognition and management in primary care Alzheimer’s New Zealand/ADI Conference November 3rd-5th 016 Steve Iliffe Emeritus Professor of Primary Care & Older People University College London

Dementia as a policy problem Under- or delayed diagnosis Therapeutic nihilism Knowledge gaps Numbers estimated by UK Alzheimer’s Society (2013): 856,700 people with dementia Numbers estimated by CFAS 2 (2015): 670,000

Recognition and misattribution Misattribution of early symptoms to events, experiences, personality or ageing delays help-seeking in almost a third of symptomatic people by up to two years Feldman L, et al Carers' causal attributions of symptoms and help-seeking in dementia: a qualitative study Dementia 2015; Jun 30. pii: 1471301215593185

From the Dementia strategy 2009 to the Prime Minister’s Challenge 2020 Incentivisation of diagnosis and management in general practice (Quality & Outcome Framework) Proportion of expected case-load identified Case-finding/Screening in general practice Educational activities aimed at GPs Memory services with diagnostic & support roles

Rewarding dementia management Indicator Points Achievement thresholds DEM001. A register of patients diagnosed with dementia 5 Not applicable DEM004. % with dementia whose care plan has been reviewed in a face-to-face review in the preceding 12 months 39 35–70% DEM005. %with a new diagnosis of dementia with a record of FBC, calcium, glucose, renal and liver function, thyroid function tests, serum vitamin B12 and folate levels 6 45–80% Actual achievement /maximum potential achievement x number of points available for indicator x £ value of a QOF point.   Value of a QOF point = £160.15 (2015/16)  Full achievement: 50 points x £160.15 = £8,006

Data sources THIN database ~ incidence of dementia NHS data ~ prevalence of dementia Freedom of Information Act data ~ selected memory clinic activity

THIN database analyses (1995) 476 group practices routinely using electronic medical records 1, 338,659 patients aged 60 or over Rait G, Walters K, Bottomley C, Petersen I, Iliffe S, Nazareth I Survival of people with a clinical diagnosis of dementia in primary care BMJ 2010 Aug 5;341:c3584. doi: 10.1136/bmj.c3584 Cooper C, Lodwick R, Walters K, Raine R, Manthorpe J, Iliffe S, Petersen I Observational cohort study: Deprivation and access to anti-dementia drugs in the UK Age & Ageing 2015 18. pii: afv154 Walters  K., Hardoon  S., Petersen  I., Iliffe  S, Omar  R., Nazareth  I., Rait  G. Predicting dementia risk in primary care: development and validation of the Dementia Risk Score using routinely collected data BMC Medicine 2016,14:6

Incidence of dementia in the THIN database Dementia QOF begins

Trends in dementia code use 1995-2011

Prevalence of dementia (thousands) 2006-14 Alzheimer’s Society estimate (2013): 856,700 CFAS 2 estimate (2015): 670,000

Prevalence of dementia (%) 2006-14 Alzheimer’s Society estimates prevalence at 1.3% (2013)

Referrals to 11 memory clinics, and proportions diagnosed as having dementia 2011-2015 Data obtained from a Pulse magazine Freedom of Information request, February 2016

Percentage of patients referred to memory clinics who receive a dementia diagnosis Data obtained from a FoI request, February 2016

Time in days from referral receipt to first assessment, 12 memory clinics

Some comments and questions After all these efforts, why is there no upturn in incidence or prevalence? Is the upward trend in incidence or prevalence due to population ageing? Coding in electronic medical records can skew data Memory clinics are seeing more patients, faster, but fewer are being diagnosed with dementia. Thank you for listening! s.iliffe@ucl.ac.uk