ppg open meeting

PPG OPEN MEETING18 May 2013

Slide 1

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)

2

Aging Gracefully – An Aging Gracefully – An Introduction to DementiaIntroduction to Dementia

Dr Svetlana HemsleyDr Svetlana Hemsley

Important messagesImportant messages Not part of normal agingNot part of normal aging It is caused by diseases of the brain, most It is caused by diseases of the brain, most

common is Alzheimer’scommon is Alzheimer’s It is not just about losing your memory, it It is not just about losing your memory, it

can affect thinking, communicating and can affect thinking, communicating and everyday taskseveryday tasks

It is possible to live well with itIt is possible to live well with it There is certainly more to a person than There is certainly more to a person than

the dementiathe dementia

Some numbersSome numbers 36 million people with dementia in the world 36 million people with dementia in the world 28 million not diagnosed28 million not diagnosed 800 000 in the UK800 000 in the UK double every 20 yearsdouble every 20 years 1 million by 20211 million by 2021 1.7 million by 20511.7 million by 2051 1 in 20 over 65s1 in 20 over 65s 1 in 5 over 80s 1 in 5 over 80s

Estimated number of people Estimated number of people diagnosed and undiagnosed diagnosed and undiagnosed

with dementiawith dementia Oxfordshire (population-648 700)Oxfordshire (population-648 700) 2011 – 76272011 – 7627 2 out of 3 people with dementia in 2 out of 3 people with dementia in

Oxfordshire never get a diagnosisOxfordshire never get a diagnosis 136 place out of 176 136 place out of 176 1 - Glasgow1 - Glasgow

Oxfordshire PCT 2,670 2,886 7427 7627 36.0% 37.8% 1.9% 4741 136 91

Prevalence of dementia by Prevalence of dementia by age and genderage and gender

SOME MORE NUMBERSSOME MORE NUMBERS Prevalence of dementia (per 100,000 Prevalence of dementia (per 100,000

population):population): 30-34 – 9.430-34 – 9.4 40-44 – 14.040-44 – 14.0 50-54 – 58.350-54 – 58.3 60 – 64 – 155.760 – 64 – 155.7 70 – 74 – 2900.070 – 74 – 2900.0 80 – 84 – 12200.080 – 84 – 12200.0 95+ - 32500.095+ - 32500.0

What is dementia?What is dementia?

Alzheimer’sDisease

60%-70%

•Early onset•Normal onset

Vascular (Multi-infarct)

Dementia15%-25%

Lewy Body Dementia5%-8%

DEMENTIA

Other Dementias•Metabolic•Drugs/toxic•White matter disease•Mass effects•Infections•Parkinson’s

Fronto-Temporal

Lobe Dementias

3%-5%

How brain worksHow brain works EmotionalEmotional SensorySensory MotorMotor CognitiveCognitive

Memory Attention

Communication

EmotionsSkills and tasks

Understanding

Brain functions overlapBrain functions overlap

SYNAPSES

LOOPS PATHWAYS

CIRCUITS

Risk FactorsRisk Factors The two major The two major riskrisk factors for dementia factors for dementia

age age family history (pure genetic cause is rare, less family history (pure genetic cause is rare, less

than 1/1000)than 1/1000)

Other possible risk factors:Other possible risk factors: head injury, low education level, estrogen head injury, low education level, estrogen

replacement after menopause, life-style, replacement after menopause, life-style, smoking, high blood pressure and cholesterolsmoking, high blood pressure and cholesterol

StagesStages Pre-dementia (Mild Cognitive Impairment)Pre-dementia (Mild Cognitive Impairment)

Early Dementia: Early Dementia: difficulty learning and retaining new informationdifficulty learning and retaining new information

Moderate dementia: Moderate dementia: needs help with daily tasksneeds help with daily tasks Late Dementia: Late Dementia:

inability to access recent and distant memories, inability to access recent and distant memories, impaired judgment, impaired judgment, thinking becomes less clear, thinking becomes less clear, getting lostgetting lost

Clinical featuresClinical features Dementia has an effect on the Dementia has an effect on the

person’s daily life:person’s daily life: ADL’S ADL’S (eating, bathing, grooming)(eating, bathing, grooming) planning mealsplanning meals managing finances managing finances medicationsmedications communicationcommunication drivingdriving

Blood VesselsBlood Vessels

CT Brain ScanCT Brain Scan

Lewy BodiesLewy Bodies

Fronto-temporal DementiaFronto-temporal Dementia

Age: 65Age: 65 Often runs in familiesOften runs in families Cognition: Executive Function Cognition: Executive Function

ImpairmentImpairment Early personality change with social Early personality change with social

disinhibitiondisinhibition

DementiaDementiaThe patient pathwayThe patient pathway

Dr Angela LambDr Angela Lamb

The first signs......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”

What next ?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

Seeing the doctorSeeing 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

Review appointmentReview 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?

Formal diagnosisFormal diagnosisMemory clinic• Assessment• Investigations ( CT scan usually in

advance) and discussion of results• Possibly medication – trial initially then

ongoing• Signposting to other help / support

Ongoing reviewOngoing 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

Focus on dementiaFocus 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

Dementia and Research Dementia and Research Claire Merritt (MSc, RMN) Claire Merritt (MSc, RMN)

Lead Research NurseLead Research NurseThames Valley Dementia and Neurodegenerative Disease Research Network Thames Valley Dementia and Neurodegenerative Disease Research Network

(DeNDRoN)(DeNDRoN)

www.dendron.org.uk

www.dendron.org.ukwww.dendron.org.uk

Our understanding of Dementia has increased markedly over

many years


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

www.dendron.org.uk

‘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’

But despite the headlines?


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

• .


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.”


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

0

20000

40000

60000

80000

100000

120000

140000

Poun

ds

cancerheart diseasestrokedementia


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, £3500 respectivelyApprox. £50 million per year is spent on dementia research compared to £590 million on cancer research


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)


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.


DeNDRoN - Our aim To offer all patients 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


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


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


Testing new treatmentsDAPA– 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 Trial This 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


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.


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)

www.dendron.org.uk

5 ways people can help Dementia research

1.Take part in studies (it is not just people with dementia we need but also healthy controls)2.Ask about current research projects or complete a research interest form3.Join our members’ advisory panel - Friends of DeNDRoN4.Become a champion of research in your local group or community5.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


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

http://www.dendron.org.uk/rn/thames-valley.html

http://news.bbc.co.uk/today/hi/today/newsid_9703000/9703616.stm

www.dendron.org.uk

CONTACT US

Email: [email protected]

Tel: 01865 231556

Email: [email protected]

Visit: http://www.dendron.org.uk/rn/thames-valley.html

www.dendron.org.uk

mailto:[email protected]

mailto:[email protected]

http://www.dendron.org.uk/rn/thames-valley.html

ppg open meeting

Documents

numbersprevalence of

daily taskslate dementia

old age psychiatry

possible risk factors

old age isnt

major risk factors

persons daily life

normal aging