Early Intervention in Dementia Bernie Coope Consultant Old Age Psychiatrist/Associate Medical Director/Honorary Senior Lecturer, Worcester Association for Dementia Studies

Why dementia matters Dementia is the most costly condition the UK faces and costs more than heart disease, cancer and heart disease combined (not NHS costs!) People fear dementia more than cancer Dementia causes more psychosis than schizophrenia 1/3 of us will die with dementia. “Progressive and terminal brain disease”

The Good Old Days MildModerateSevere 100% Dear Dr, Can you see this man who has been confused for the past five years and doesn’t recognise his family?

Pre and Post Aricept MildModerateSevere 100%

Some uncomfortable truths There is no treatment or other intervention that prevents dementia or changes its progression There is no benefit in an unwanted diagnosis There is no evidence to support screening

UNLOCKING THE DIAGNOSIS-THE KEY TO IMPROVING LIVES OF PEOPLE WITH DEMENTIA All Party Parliamentary group on Dementia A diagnosis of dementia opens doors. It gives a person access to treatment and often support services. It allows them to plan for their future. It provides them with knowledge of what is happening to them. Yet it is still common for a person with dementia to live with the condition and never be given a formal diagnosis.

DEMENTIA ACTION ALLIANCE-CALL TO ACTION 1. I have personal choice and control or influence over decisions about me I have control over my life and support to do the things that matter to me. I have received an early diagnosis which was sensitively communicated. I have access to adequate resources (private and public) that enable me to choose where and how I live. I can make decisions now about the care I want in my later life. I will die free from pain, fear and with dignity, cared for by people who are trained and supported in high quality palliative care

Why have an early intervention service? Aim and Evidence Base Improve the lives of those affected by early dementia People want to know the diagnosis (Alzheimer's Society) Early Intervention Improves QOL for patient and carer, and reduces crisis in the future Early Intervention in Dementia is a NICE dementia standard and central to the National Dementia Strategy.

The Goldilocks Zone Too earlyJust rightToo late Not enough impairment to make a confident diagnosis Fear of dementia and memory frustration Enough impairment to make a confident diagnosis Enough memory to take it in Wish to know the diagnosis Important but not urgent Patient unable to take in the diagnosis Carer Stress or breakdown Psychiatric symptoms Risk Need of care package

A guide to referral to EI Is it likely that the person has dementia? – Age – History of examples, not worries, or lapses of concentration – History from other – Testing Is it too late – Is there a need to do something quickly? – Is the person consenting and capable of consenting?

Drug treatment All stages of Alzheimer’s Disease now eligible for drug treatment Specialist initiation and review after three months, then primary care follow up. Symptomatic not disease modifying. Only 50% benefit from cholinesterase inhibitors and commonly by very small amount 1 in 10 drop out because of side effects Risk in H/O asthma, peptic ulcer or bradycardia

What your patients get Home visit after referral for initial discussion and consent, assessment starts if OK Clinic assessment-Dr and Nurse, history and cognitive examination Imaging Feedback discussion and sharing the diagnosis (may take three months to get to this stage) Treatment where appropriate Approximately three months of intervention

“After a diagnosis, people with dementia want to be shown the path, not shown the door.”  Terry Pratchett

Making the diagnosis and sharing the diagnosis...what then? What is intervention? Intervention extends to the whole journey that a person with dementia and their family are on A meaningful discussion about the outcome of assessment Choice to be assessed, to hear the diagnosis and who to share it with Emotional support Advice and information Introduction to dementia advisors and Alzheimer’s Cafe Driving Thinking of the future, LPAs etc Admiral Nurse Prescribing Discharge

What does the Early Intervention Team hope to do?

What you get Clear pathway for early dementia of all ages A diagnosis-syndromal and pathological Assessment for drug treatment and a three month treatment trial Families prepared for the future

Challenges Volume of referrals NICE Guidance and move to a treatment service-increase in contacts per patient and demand Worried well/non-dementia referrals Delay in assessment and intensity of intervention