PPG Open Meeting

1. PPG Open Meeting 18 May 2013

2. Dementia • Introduction to Dementia – Dr Svetlana Hemsley • (Locum consultant in Old Age Psychiatry for the South Oxfordshire Mental Health Team at Oxford Health NHS Foundation Trust) • The Patient Pathway – Dr Angela Lamb • (Dementia lead Partner Goring and Woodcote Medical Practice) • Research – Claire Merritt • (Lead Research Nurse Manager at Thames Valley DeNDRoN) • Patient and Carer Support – Janet Briggs • (Dementia Adviser South and Vale)

3. Aging Gracefully – An Introduction to Dementia Dr Svetlana Hemsley

4. Important messages • Not part of normal aging • It is caused by diseases of the brain, most common is Alzheimer’s • It is not just about losing your memory, it can affect thinking, communicating and everyday tasks • It is possible to live well with it • There is certainly more to a person than the dementia

6. Some numbers • 36 million people with dementia in the world • 28 million not diagnosed • 800 000 in the UK • double every 20 years • 1 million by 2021 • 1.7 million by 2051 • 1 in 20 over 65s • 1 in 5 over 80s

7. Estimated number of people diagnosed and undiagnosed with dementia • Oxfordshire (population-648 700) • 2011 – 7627 • 2 out of 3 people with dementia in Oxfordshire never get a diagnosis • 136 place out of 176 • 1 - Glasgow Oxfordshire PCT 2,670 2,886 7427 7627 36.0% 37.8% 1.9% 4741 136 91

8. Prevalence of dementia by age and gender

9. SOME MORE NUMBERS • Prevalence of dementia (per 100,000 population): • 30-34 – 9.4 • 40-44 – 14.0 • 50-54 – 58.3 • 60 – 64 – 155.7 • 70 – 74 – 2900.0 • 80 – 84 – 12200.0 • 95+ - 32500.0

10. What is dementia?

11. Vascular (Multi-infarct) Dementia 15%-25% DEMENTIA Lewy Body Dementia 5%-8% • Other Dementias • Metabolic • Drugs/toxic • White matter disease • Mass effects • Infections • Parkinson’s • Alzheimer’s • Disease • 60%-70% • Early onset • Normal onset Fronto- Temporal Lobe Dementias 3%-5%

12. How brain works • Emotional • Sensory • Motor • Cognitive

14. Memory Attention Communication Understanding Emotions Skills and tasks Brain functions overlap

15. SYNAPSES CIRCUITS LOOPS PATHWAYS

16. Risk Factors • The two major risk factors for dementia • age • family history (pure genetic cause is rare, less than 1/1000) • Other possible risk factors: • head injury, low education level, estrogen replacement after menopause, life-style, smoking, high blood pressure and cholesterol

17. Stages • Pre-dementia (Mild Cognitive Impairment) • Early Dementia: • difficulty learning and retaining new information • Moderate dementia: needs help with daily tasks • Late Dementia: • inability to access recent and distant memories, impaired judgment, thinking becomes less clear, getting lost

18. Clinical features • Dementia has an effect on the person’s daily life: • ADL’S (eating, bathing, grooming) • planning meals • managing finances • medications • communication • driving

20. Blood Vessels

21. CT Brain Scan

22. Lewy Bodies

23. Fronto-temporal Dementia Age: 65 Often runs in families Cognition: Executive Function Impairment Early personality change with social disinhibition

24. Dementia The patient pathway Dr Angela Lamb

25. The first signs...... • “You’re always forgetting things Mum” • “I’m not very good with names but that’s just part of old age isn’t it?” • “It’s just a missed appointment” • “She usually recalls all the family birthdays” • “Starting to look unkempt”

26. What next ? • Talk to them if you are worried - they might be as well, but afraid to say • Denial is common • Difficult to get them to the doctor • See GP with your own concerns

27. Seeing the doctor • General chat, if time a screening test • Arranging another appointment for a unrushed screening test • Arranging some blood tests to ensure nothing treatable contributing to poor memory

28. Review appointment • Ask how they are feeling about it all • Go over blood test results • Consider referring to memory clinic • How much help needed / being given • Who is main carer?

29. Formal diagnosis Memory clinic • Assessment • Investigations ( CT scan usually in advance) and discussion of results • Possibly medication – trial initially then ongoing • Signposting to other help / support

30. Ongoing review • Regular review – frequency will depend on need – GP and /or Memory clinic • Ensuring carers have enough support • Managing symptoms of dementia • Managing other medical problems appropriately • Future planning • Pre-empting crises

31. Focus on dementia • Education – NHS Health checks • Increased awareness • Reducing stigma that stops people mentioning their problem • Recognition by clinicians • Appropriate diagnosis • Reduce number of patients who go undiagnosed • Screening at risk groups • Improved community support

32. Dementia and Research Claire Merritt (MSc, RMN) Lead Research Nurse Thames Valley Dementia and Neurodegenerative Disease Research Network (DeNDRoN) www.dendron.org.uk

33. Our understanding of Dementia has increased markedly over many years

34. A few things that have been discovered over the course of my career • Age is highest risk factor (although more people do not go on to develop dementia than do) • Mild Cognitive Impairment (MCI) is a recognized diagnostic criteria (not everyone who develop memory difficulties will go on to develop dementia) • We are now better at being able to differentiate between different types of dementia • Anti-dementia drugs are available which can (for some people) be beneficial in treating symptoms for a limited period • Alzheimer’s disease begins 10 to 20 years before there are any symptoms

35. But despite the headlines? ‘Jab to reverse Alzheimer's: Breakthrough vaccine could be available within two years’ ‘A pill once used as an antihistamine in Russia has shown a slight but unique promise for treating Alzheimer's disease’ ‘Statins halt Alzheimer’s’ ‘Daily Dose Of Chocolate Could Ward Off Alzheimer's, Study Suggests’

36. We still have a long way to go ‘Breakthrough vaccine could be available within two years’ - Test results released in August 2012 showed that the drug and a similar drug didn’t improve patients’ memory or thinking ‘A pill once used as an antihistamine in Russia has shown a slight but unique promise for treating Alzheimer's disease’ - Subsequent studies suggested the drug ‘may be no more effective than a placebo at treating the disease’ ‘Alzheimer's: statin cure claims unfounded’ - this claim was based on a small laboratory study that used mice • .

37. Whilst disappointing – we learn a lot from these studies ‘Breakthrough vaccine could be available within two years’ - Test results released in August 2012 showed that the drug and a similar drug didn’t improve patients’ memory or thinking. ‘An experimental drug that failed to help Alzheimer’s symptoms in a study, showed signs of reducing physical damage in the brain, according to a deeper analysis. “The disease begins 10 to 20 years before there are any symptoms, and now we are better at detecting some of those changes. Drugs like this that lower amyloid will probably have their greatest impact earlier on. We have to test that.”

38. Research spend per £1M care spendData from Dementia 2010, University of Oxford Health Economics Research Centre for the Alzheimer’s Research Trust

39. In figures • There are 825,000 people in UK with dementia, at a cost of £23 billion per annum This represents a per annum cost per person of £27,878 This compares to the annual cost per person for cancer, stroke, heart disease which is of is £6000, £4770, £3500respectively Approx. £50 million per year is spent on dementia research compared to £590 million on cancer research

40. Dementia research as a national priority? • Dementia is one of the most important issues that we face as our population ages. We know it can have a devastating effect on peoples’ lives so it is essential that we develop new treatments to help patients and their families. (Andrew Lansley, 2011) • There’s only two ways it can go: researchers, with as much help as we can give them, may come up with something that reduces the effects of this dreadful, inhuman disease, or we will have to face the consequences of our failure to prevent the final years of many of us being a long bad dream. (Sir Terry Pratchett, 2008)

41. Launch of National Challenge of dementia (March 2012) David Cameron said: "We need an all-out fightback against this disease, one that cuts across society. This is a personal priority of mine, and it's got an ambition to match. That ambition – nothing less than for Britain to be a world leader in dementia research and care. Dementia research funding to more than double to £66m by 2015 http://www.ucl.ac.uk/news/news-articles/March2012/26032012-David-Cameron-Prime-Minister-IoN-Institute-Neurology-dementia

42. Dementia research as a national priority? NIHR Dementia and Neurodegenerative Diseases Research Network (DeNDRoN) is part of The National Institute for Health Research (NIHR), which was founded by The Department of Health in 2006. This is the research arm of the NHS is one of several disease-specific networks which aim to improve the quality and quantity of NHS based research, resulting in better prevention, diagnosis, treatment and care for patients.

43. DeNDRoN - Our aim To offer allpatients with a dementia or neurodegenerative disease the opportunity to participate in and benefit from high quality clinical research. This includes all Dementias, Parkinson’s disease, motor neurone disease, Huntington’s disease and other neurodegenerative diseases

44. Taking part in research... • All research goes through a strict and rigorous ethical approval. • We must gain informed consent from all participants. • Participation is entirely voluntary. • Everybody has the right to withdraw from a study without it affecting their medical treatment and care. • All information and results are kept strictly confidential and anonymous • Being part of research can be a very fulfilling and rewarding experience • There is never any obligation to take part

45. Types of Dementia Research? • Research helps us improve our knowledge and understanding of Dementia including: • Causes of Dementia • Diagnosing people more accurately • Preventing and treating Dementia • Developing psychological approaches • Understanding the impact of Dementia on the person and their loved ones. • Finding ways to provide better care and support • Finding ways to help people live well with dementia

46. Testing new treatments DAPA– Dementia And Physical ActivityThe DAPA trial aims to establish whether exercise is effective in treating against functional and cognitive decline in community dwelling adults with mild to moderate dementia. EPOCH TrialThis is evaluating the effectiveness and safety of a new type of medication that may help slow the progression of mild to moderate Alzheimer’s Disease.  Donepezil in Early Dementia Associated with Parkinson's Disease (MUSTARDD-PD)This study is looking at whether or not donepezil (a drug widely used in for the symptomatic treatment of mild to moderate Alzheimer’s dementia) can help patients with Parkinson’s related dementia

47. Gaining a better understanding Prevalence of Visual Impairment in Dementia (PRoViDE) There are a number of medical conditions that affect eyesight as we get older. If these are not detected or not managed correctly they can lead to sight loss which, in turn, can affect quality of life. We suspect that some people with dementia do not have their eyes examined as often as they should and that some do not go on to have proper care when sight problems occur.  In this study people with dementia are invited to have an NHS-funded eye examination. Understanding the early pathological pathways in Parkinson’s Disease (MONUMENT DISCOVERY) The Monument Trust Discovery Award at the University of Oxford is the largest ever research grant given by Parkinson’s UK, the UK’s biggest research and support charity for people affected by Parkinson’s. This ground-breaking project launched the Oxford Parkinson’s Disease Centre, bringing together a world-class team of researchers to better understand Parkinson’s to allow everyone to live free from symptoms of the condition.

48. Brains for Dementia Research (BDR) Brain tissue from regularly assessed individuals provides the very best resource for scientists working on understanding dementia www.brainsfordementiaresearch.org.uk We are inviting people diagnosed with a memory impairment (or dementia) to participate in monitoring of memory, thinking and behaviour prior to brain donation. We also invite those over the age of 70 who do not have a memory impairment to take part as normal tissue is essential for comparison. “The quicker they find a cure the better, so they are welcome to my brain.” Gerry Anderson (The Telegraph, 25 Jan 2013)

49. 5 ways people can help Dementia research Take part in studies (it is not just people with dementia we need but also healthy controls) Ask about current research projects or complete a research interest form Join our members’ advisory panel - Friends of DeNDRoN Become a champion of research in your local group or community Contribute to training sessions: we need your expertise… If you’d like to help, we’d love to speak to you. You can make a difference! www.dendron.org.uk

50. Research done locally can make a differenceThe DOMINO-AD Trial ‘A new study has found that people with Alzheimer's disease could benefit "significantly" from taking drugs that many sufferers are being denied at the moment. that the drug Aricept, prescribed to patients in the mild to moderate stages, is withdrawn in the severe stages under guidelines from medicines regulator NICE’. The trial has shown that some patients who continued taking donepezil were able to function better for a year longer than those who stopped taking the drugs. Professor Clive Ballard, of the Alzheimer’s Society, which co-funded the study, said: ‘This research, if acted upon, has the potential to change the lives of up to 450,000 more people today and many more in the future. http://news.bbc.co.uk/today/hi/today/newsid_9703000/9703616.stm