Developing a template for a ‘Brain Health Clinic’

1. Developing a template for a ‘Brain Health Clinic’ Dementia Academy 2019 Consensus Working Group Feb 28 2019

2. Objective • To pool the expertise of DA delegates to design a template for how a NHS-based ‘Brain Health Clinic’ (BHC) might look • To complement the Edinburgh Consensus (Ritchie et al, 2017) outlining the need to incorporate: • alternative approaches to dementia prevention • cost effective, pragmatic and accessible intervention • focus on secondary and tertiary prevention

3. Overall Drivers • European public health agenda of ‘pre-empt and prevent’ vs ‘diagnose and manage’ • Aging of the population • UK 5 year prevention agenda (Helen) • Diagnosis of Alzheimer disease (AD) in preclinical & prodromal stage, reflected by the most recent diagnostic criteria • Drive to finding disease modifying therapies • Several recent high profile failures but new profile on promise of aducanumab and alternative approaches (e.g. anti-tau, anti-inflammatory) • NICE guidelines for MCI • Cost effectiveness of delaying conversion to ‘dementia’ from MCI

4. Background to Memory Clinics in the UK • Memory assessment services first developed in the NHS in the 1990s as dementia medication management clinics when the cognitive enhancing drugs for Alzheimer disease (AD) were first licensed. • mostly university-based but then developed into an integral part of the majority of later life psychiatry services throughout the UK • A few tertiary care clinics for complex, atypical or young onset dementia exist • A few private memory clinics offering diagnostic services, linked to trials • A typical mental health provider organisation in the NHS in England, follows a model of delivering a comprehensive psychiatric, cognitive, social and physical assessment, including the use of neuroimaging in order to arrive at a diagnosis of a sub-type of dementia.

5. Need for a new model of ‘memory clinic’ • Push to decrease the involvement of MAS in the overall • Many do not accept patients who are not in the ‘dementia’ phase of the their condition • Increasing outsourcing of services to non-medical providers • Not fit-for-purpose for the early, precise (specificity and sensitivity) diagnosis of early AD and other progressive neurodegenerative conditions in the pre-dementia stage • Outdated, crude cognitive testing • No access to biomarkers • No facility to follow patients longitudinally • No use of predictive models • No focus on secondary prevention

6. Method • Consensus pooling of expertise in diagnosis and clinical management of older people with cognitive impairment • Expertise: • Geriatric (Old Age) psychiatrists • Clinical academics in geriatric psychiatry • Dementia clinical researchers with expertise in observational studies and RCTS • Geriatricians (Physicians of later life) • Primary care • Specialist dementia and neurodegeneration nurses • Higher trainees • Neurology

7. Principles: Key considerations (All) • Theoretical background/underlying assumptions • Pragmatic • Cost-effectiveness • Use/’re-purposing’ of existing resources • Linked to ongoing research efforts • Multi-disciplinary • Community-based – flexible, tailored • ?near-patient care? (Helen) • Prevention? Delay? Control • Living well with ?cognitive impairment • At scale – can be achieved locally using existing resources • Wider scale – avoiding postcode cover with aspiration of national covers

8. Group 1: Mission statement and Aims • Mission statement: • Aspirational statement of lowering the prevalence of dementia in society; • Aims: • (What is the purpose of a BHC?) – what do we do? We diagnose and manage MCI • Objectives: • Risk stratification • Secondary prevention • Early detection of disease – sensitivity /speci of assessment in hi risk or symptomatic people (NOT screening) • primary care still in gatekeeping role and initial workup • Tertiary prevention • Mitigation of clinical syndrome once present • Delaying or ?halting progression

9. Group 2: Who is it for? • Typical patient profile • Identifying high risk groups • Inclusion criteria? • ?need screening • Exclusion criteria? • Self or informant reported cognitive complaint • Objective cognitive impairment (especially if evidence of impairment of episodic memory) – ‘objective’ = below the age-norms on a screening cong test OR informant –reported • Preserved independence in functional abilities • No dementia • [No Age cut-off ? but Aging related cognitive change • ?SCI …waiting for evidence [careful wording]…preclinical stage • Exclusion Criteria for the Service • Secondary MCI due to another identified cause e.g. depression, acute psychosis, alcohol etc (list not exhaustive) which requires treatment first line. • Patients can be referred to the MCI service if evidence of MCI persists following effective treatment of primary illness or resolution of other potential trigger factors. • Time frame – persistent nature to the complaint

11. Who should be on the team and where should it be? PEOPLE: Multidisciplinary input Existing structures • Geriatric psychiatry/neuropsychiatry • Neurology • Neuroradiologist • Geriatrician • GP/primary care • Specialist memory nurse • OT • Neuropsychologist • Lifestyle coach/OT/behavioural change PLACES • Virtual • How will ‘host’ – acute care, primary care, mental health, neurology? • Wider group contacts – existing structures • *Core Team • *wider referral resource (‘men in sheds’)

12. Group 3: Assessment and diagnosis(Tobias, Mehran, Vach) • Why are we doing this? • RISK STRATIFICATION – who will progress and who won’t • The value of a diagnosis • The need to identify those who may benefit from DMT when available • Clinical • Mci definition • Cite diagnostic criterias and reference here - • Behavioural • NPI – in MCI –(Lyketsos et al) • functional assessments • Functional activities questionnaire FAQ/Amsterdam IADL scale- short version – tablet based • Performance-based evaluations • Neuropsychological testing • RBANS/FCRST/ **EPAD paper on cog testing for MCI** (Ritchie et al) • Fluid/blood biomarkers • CSF – commercial testing available AB42/tau **CITE good review of biomarkers • Urine/plasma – not in clinical use • Genetic testing – HELEN provide a couple of lines of a) risk b) availability of testing in clinic setting c)swabs …?future • Neuroimaging biomarkers • MRI – using accepted protocol for hippocampal volume – focal atrophy • Amyloid PET – several ligands; cite paper on clinical decision-making regarding this; issues of availability (tau – research only; not useful for MCI – correlates with level of cognitive decline)….must be coupled with amyloid based DMt…OR in some cases, may resolve diagnostic dilemmas..referring to best practice guidance, which is available • FDG-PET • fMRI • Dig

13. Digital biomarkers • Remote monitoring – sleep, gait, activty (i.e. smart watches) to detect poor cognitive trajectories • Wearables • Continuous data from self-report

14. Discussion • What is the ‘dummy route’ • What is the ‘bells and whistles’ route • Future: need good evidence in service rsearch …figure out the best model using best research practice

15. Group 4: Intervention 1Non-drug therapies to slow dementia • Evidence for modifiable risk factors – epidemiological modelling • Lancet Commission model (Livingston et al 2018) – 9 factors (alcohol, drugs) • Addressing comorbidities (hearing, vision) • CFAS data – attributable risk for dementia at death in 80/90s • 20%AD; 20% vascular • Evidence for modification of modifiable risk factors (‘risk modification’) • Cite successful evidence in dropping stroke incidence by BP and salt intake control • Trajectories according to ‘cognitive lifestyle’ (education, midlife stimulation, later life engagement etc) …Marioni 2011 • FINGER trial • Models of lifestyle intervention…Carolyn Chew-Graham • HATICE study – online lifestyle coaching for healthy ageing (EU funded) • Diabetes management • …weight loss model ABL ‘Choose to change’ – MDT group therapy approach

16. ??Specific description of a lifestyle programme

17. Group 5: Intervention 2Drug-based therapies to delay dementia • Managing medical risk factors – HTN, cholesterol …. • Disease modifying therapies (Edinburgh consensus) • We don’t have a DMT yet – do we set up the clinic with this in mind? • Will the BHC run ‘alongside’ a DMT treatment clinic? • What possible drug-type interventions need to be catered for? • i.e if BHC in primary care or mental health, will there be access to medical monitoring/infusion etc?

18. Group 6: Outcomes and monitoring • How is ‘success’ defined • Population/community level?.....MISSION – decrease population level dementia prevalence • Clinic level?...diagnosis rates on audit • Individual level? • When will they be discharged (what is the end-point of being a ‘clinic attendee’) • How often should people be monitored? • 9-12m (?evidence – try to link to MCI conversion rate 5-10%...find a basis for this) • What measures/tools/outcome ratings should be used? • Repeat cognitive test ?which ones – must be sensitive to change/no test-retest problems/learning effects • Based on risk stratification – MTA score basis/ very amnestic on baseline testing/other risk factors….need good risk strat model for this – but can pose the question at least • Consider ‘special groups’ for whom standard tests are not valid (ie.. Culture, languge, LD, sensory impairment etc) • When to refer out (move on to other services)…WHEN? ….2-3 cycles…?evidence…maryganguli papers on MCI prognosis • A) get better • B) stay the same • C) get worse • Regular MAS/dementia clinic • Research study • General psychiatry (i.e. for BPSD) or other service according need – YODS, behavioural neurology, neurology (PD) • Back to GP….asking GP for X, y, Z for flag up in meantime; dynamic relationship…sending out algorithmic management –specialist clinic as specialist resource not overburdened service **PPRINCIPLE***

19. discussion • **Helen • Second and tertiary service – no duplication (add as a principle) • flag up in meantime; dynamic relationship…sending out algorithmic management –specialist clinic as specialist resource not overburdened service **PPRINCIPLE***

20. Ongoing monitoring • Digital biomarkers • Remote monitoring – sleep, gait, activty (i.e. smart watches) to detect poor cognitive trajectories • Wearables • Continuous data from self-report using tablet, cell phone • Online monitoring

21. Other considerations • Cost • Links with primary care • Research programmes/RCTs • Business plans • Geographical considerations: local or regional

22. Memory problem Go to GP APPENDIX 1 CMHT Assessment or urgent assessment if risk identified ACE3/Clinical interview Discuss at CMHT MDT Further investigations if needed (scan/neuro psych) If refuse MCI assessment, offered healthy brain programme If refuse, discharge to GP Flowchart of the pathway through the Brain Health Clinic MCI N=30/month Full MCI assessment (FCSRT and RBANS) Psychometric Test Rater (s/v by Psychology). MCI Pathway Meeting (Consultant Psychiatrist, Psychologist, Specialist Nurse):-to determine primary pathway/feedback/retests/ maintain service overview. If to be considered for research project, feedback by Consultant psychiatrist who will outline research offer. If low risk feedback by specialist nurse If high risk but not suitable for research feedback by Psychologist. Proactive recall offered. May need further testing MCI healthy brain programme 1. Memory skills groups • 2 or 3 + 1 feedback and goal planning sessions with specialist nurse. Focus on supporting lifestyle change to improve cognitive resilience. If suitable and consent If high risk If not suitable or not consent Enter research trials. Dept. on nature of RTs could also access healthy brain service during or following research trail. Retests at 9 months (discharge to GP and recalled) to identify if any transition. MCI Healthy Brain Programme If tests suggest transition, apt. to see MCI consultant If diagnosis confirmed treatment started. D/C 3 months If no transition after 2 retests, recall ceases. Discharge back to GP Discharge back to GP

23. Flowchart of the pathway through the Brain Health Clinic

24. Next steps • ?another group meeting • How do we include the wider DA group? • PPI/lay stakeholder involvement • Drafting the proposal • Overall outline • Who will do what • Finding good references/guidelines – NOT REINVENTING THE WHEEL • Models of ‘wrap around’ services to lean on? • Future plans for dissemination • ?format • ?journal article • ?conference presentation – when, where • ?wider consultation

25. Tasks to divide up

26. Tasks to divide up

27. Next meeting • Timeline • XXX: IL to send outline – in 2 weeks?? • March 30: All tasks to IL by March 30 (Jackey to give WEEKLY reminders) • April 30: IL to pull together first overall draft (Jackey NOT to give weekly reminders) • May 15: complete Review by all authors • May 30: Submit