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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)
Aging Gracefully – An
Introduction to Dementia
Dr Svetlana Hemsley
Important messages
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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
Some numbers
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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
Estimated number of people diagnosed and undiagnosed
with dementia
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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
Prevalence of dementia by age and gender
SOME MORE NUMBERS
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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
What is dementia?
DEMENTIA
Alzheimer’s
Disease
60%-70%
•Early onset
•Normal onset
Vascular
(Multiinfarct)
Dementia
15%-25%
Lewy Body
Dementia
5%-8%
FrontoTemporal
Lobe
Dementias
3%-5%
Other Dementias
•Metabolic
•Drugs/toxic
•White matter disease
•Mass effects
•Infections
•Parkinson’s
How brain works
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Emotional
Sensory
Motor
Cognitive
Brain functions overlap
Memory
Attention
Understanding
Skills and tasks
Communication
Emotions
SYNAPSES
CIRCUITS
LOOPS
PATHWAYS
Risk Factors
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The two major risk factors for dementia
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age
family history (pure genetic cause is rare, less than
1/1000)
Other possible risk factors:
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head injury, low education level, estrogen
replacement after menopause, life-style, smoking,
high blood pressure and cholesterol
Stages
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Pre-dementia (Mild Cognitive Impairment)
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Early Dementia:
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difficulty learning and retaining new information
Moderate dementia: needs help with daily tasks
Late Dementia:
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inability to access recent and distant memories,
impaired judgment, thinking becomes less clear,
getting lost
Clinical features
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Dementia has an effect on the person’s
daily life:
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ADL’S (eating, bathing, grooming)
planning meals
managing finances
medications
communication
driving
Blood Vessels
CT Brain Scan
Lewy Bodies
Fronto-temporal Dementia
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Age: 65
Often runs in families
Cognition: Executive Function Impairment
Early personality change with social
disinhibition
Dementia
The patient pathway
Dr Angela Lamb
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 ?
• 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 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 appointment
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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 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
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
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
Dementia and Research
Claire Merritt (MSc, RMN)
Lead Research Nurse
Thames Valley Dementia and Neurodegenerative Disease Research Network
(DeNDRoN)
www.dendron.org.uk
Our understanding of Dementia
has increased markedly over
many years
www.dendron.org.uk
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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
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’
www.dendron.org.uk
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
• .
www.dendron.org.uk
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.”
www.dendron.org.uk
Research spend per £1M care spend
Data from Dementia 2010, University of Oxford Health Economics Research Centre for the Alzheimer’s Research Trust
140000
120000
Pounds
100000
80000
60000
40000
cancer
heart disease
stroke
dementia
20000
0
www.dendron.org.uk
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 respectively
Approx. £50 million per year is spent on dementia
research compared to £590 million on cancer research
www.dendron.org.uk
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)
www.dendron.org.uk
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-CameronPrime-Minister-IoN-Institute-Neurology-dementia
www.dendron.org.uk
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.
www.dendron.org.uk
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
www.dendron.org.uk
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
www.dendron.org.uk
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
www.dendron.org.uk
Testing new treatments
DAPA– Dementia And Physical Activity
The 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
www.dendron.org.uk
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.
www.dendron.org.uk
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
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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
www.dendron.org.uk
Research done locally can make a difference
The 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
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
www.dendron.org.uk