Agenda Item No:
4
HERTFORDSHIRE COUNTY COUNCIL
ADULT CARE AND HEALTH CABINET PANEL
THURSDAY 4 FEBRUARY 2010 AT 10.00AM
DEMENTIA DIAGNOSIS
[Author:
Dr Mike Walker, Consultant, Lambourn Grove Elderly
Assessment Unit, St Albans
Tel: 01727 837155]
1.
Purpose of report
1.1
To inform the Panel about why many people with dementia do not
receive a diagnosis, and why many more receive a diagnosis late in
the course of the illness.
2.
Background
2.1
Dementia is a global loss of cognitive function. It is usually progressive
and usually irreversible. There is progressive impairment of memory,
personality, language function, practical abilities, orientation and
eventually all areas of cognition.
2.2
It is increasingly common with age, the prevalence roughly doubling
with every 5 years of life. Age is the strongest single risk factor, though
there are others including gender and cardio-vascular risk factors.
Consensus estimates of the population prevalence of late onset
dementia:
Age (years)
F (%)
M (%)
Total (%)
65–69
70–74
75–79
80–84
85–89
90–94
1.0
2.4
6.5
13.3
22.2
29.6
34.4
1.5
3.1
5.1
10.2
16.7
27.5
30.0
1.3
2.9
5.9
12.2
20.3
28.6
32.5
(Alzheimer society 2007)
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The most common forms of dementia are:
Type of dementia
Approximate percentage of
cases
Alzheimer’s disease
Vascular and Mixed Dementia
Dementia with Lewy Bodies
(DLB)
Fronto-temporal dementia
(Pick’s disease)
62%
27%
Up to10%
< 5% (but a large percentage of
young-onset cases)
(derived from Alzheimer’s Society 2007)
2.3
Vascular dementia is caused by blood vessel disease in the brain. In
some cases, a number of strokes causes a total loss of brain tissue
which gradually leads to a dementia. In other cases there are not
blockages of large blood vessels with obvious strokes but the disease
is of smaller vessels with dementia itself being the first sign of illness.
There are many cases of mixed Alzheimer’s and Vascular Dementia; in
fact in recent years there has been increased evidence of a link
between the two. The absolute divide we have often made may be
incorrect in many (or even most) cases. The positive side of this is
there is quite a lot we know about how to prevent strokes. This allows
older people to take positive steps to reduce their risk of dementia. A
slogan quoted in the National Dementia Strategy is “what’s good for
your heart is good for your head”.
2.4
Dementia with Lewy Bodies is related to Parkinson’s disease. In some
cases Parkinson’s disease comes first, and in others cognitive decline
is the first sign of illness.
2.5
Fronto-temporal dementia is one of the most difficult to diagnose
correctly because there is often no impairment of memory and sparing
of other elements of cognition early in the illness. The first signs are
usually change of personality or language problems.
3.
How does Hertfordshire compare with other areas?
3.1
The Alzheimer’s society estimated that in 2007 38.5% of people with
dementia in England were recorded on their GP’s register. The
estimate for East and North Herts PCT was 39.3% and for West Herts
PCT, 35.7%.
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3.2
Percentages of the estimated number of people with dementia on the
GP dementia register by PCT:
(What every commissioner needs to know – Alzheimer’s Society 2009)
East and North Herts is at number 75, and West Herts at number 35.
3.3
What is the range of error on the estimated totals?
3.3.1
The estimate of the total number of people in Hertfordshire with
dementia (12,983) is based on a number of national and international
surveys and projected figures for the population of Hertfordshire. It is
certain that there are many more people in Herts with the condition
than are diagnosed. The actual magnitude of this difference is much
less certain. The studies from which the estimates were derived had
for example prevalence of dementia in the 85 – 90 age group ranging
from 15 – 30%. The estimate is based on an average of 20%. The
range of 15 – 30% in the 85-90 age band applied to Hertfordshire is
1900 people.
3.3.2
The population figures for Hertfordshire are based on the last full
census in 2001, with a mid-year estimate in 2006 and projections from
there. The GP dementia registers are not necessarily the same
population. Some Hertfordshire GPs have non-Herts patients and vice
versa.
4.
Why has diagnosis in the past not been made or made late?
4.1
There has been a lack of understanding of the benefits of
diagnosis
4.1.1
Until the late 1990s there were no effective medical treatments
available for the common forms of dementia. It was perceived that
making a diagnosis of an untreatable condition was not in the patient’s
interest. However in the last 10 years there have been a number of
drugs proven to have efficacy in Alzheimer’s Disease. This has helped
remove the stigma of an untreatable condition. Though the condition
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remains progressive and irreversible, effective treatment gives an
obvious reason to make a diagnosis.
4.1.2
Work with carers and service users has shown that there are
important benefits to both groups knowing the diagnosis rather that
having the massive impact of the condition build up with no
explanation or ability to plan care. If people have the diagnosis and
prognosis explained they can plan their future care with their carers.
There is evidence that early take up of social care in the community
such as home care and respite care prevents having to move to a
care home later in the course of the illness (Gaugler et al 2005).
4.1.3
The Mental Capacity Act (2005) mandates that someone with mental
capacity must give consent to any proposed medical treatment or
care activity. It allows someone with capacity to make an advanced
directive to plan their care if they lose capacity in the future. It also
allows someone to appoint an attorney to take decisions for them if
they lose capacity in the future. It is therefore vital that someone has
the opportunity to exercise these choices while they still have
capacity. This may well be the case in mild dementia, or where
dementia is suspected but not actually established, but is very often
not the cases when dementia has reached its moderately severe and
severe stages.
4.2
Stigma and autonomy
4.2.1
The situation in the past may be likened to the attitude towards
cancer diagnosis in the more distant past. It was felt that the
diagnosis was too awful to contemplate, should be hidden from the
patient and communication might be confined to a family member.
The view that the patient should be shielded from the diagnosis went
hand in hand with pessimism about treatment. Many cancers became
increasingly treatable at the same time as social changes
undermined the view that a competent adult should have decisions
made without their knowledge of the situation.
4.2.2
Surveys have shown that most people, though not all, would like to
know their own diagnosis of dementia. A smaller fraction of the
carers for people with dementia feel that the person they care for
should know their diagnosis (Jha et al 2001). In view of these
findings, the issue of communication of diagnosis should be
approached sensitively, a blanket insistence on telling everyone
would be inappropriate. The guiding principle should perhaps be that
someone should know what they are being tested for and give a view
in advance as to whether they want to know the result. One must
also bear in mind that where the diagnosis is not made early the
person with dementia may lack mental capacity to understand it.
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4.3
Referral to specialist services was usually made at a late stage
of the disease
4.3.1
When there was a perception that nothing could be done about
dementia itself, people were usually referred to specialist services
when there was a problem with their care needs or their behaviour.
Typically, care needs develop gradually from the middle phase of
dementia. Many people with mild dementia have few care needs,
being able to look after themselves for most regular daily tasks,
including in some cases being able to drive. The behavioural and
psychological symptoms of dementia can come and go throughout
the course of the illness. There may be depression and anxiety in
the early phases. The more severe behavioural problems of
aggression and wandering do not usually appear until the later
phases of the illness (except in the relatively rare fronto-temporal
variant). The perception was that specialist services were mainly for
people with moderate to severe dementia with associated problems,
not for people with mild dementia with mainly cognitive problems.
The time course of the three domains of dementia
Cognition
Care
Needs
Behavioural and
psychological
symptoms
Time
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4.3.2
Specialist services continue to have to fulfil these needs, i.e. helping
arrange care and managing behavioural problems when people
have developed moderate to severe dementia. While there is
increased awareness of the benefits of early diagnosis, there is not
the capacity to treat everyone with mild and borderline dementia as
we do people with severe problems. Members of specialist mental
health teams may have a caseload of 20 to 40 people with ongoing
problems with dementia. The total caseload of Specialist Mental
Health Teams for Older People in March 2008 was just under 5000,
including people with functional mental illness. With an estimated
population with dementia in Hertfordshire of over 12 000, it would
not be possible to work in the same way.
5.
Are current services able to deal with an increased demand?
5.1
The incidence of dementia (new cases) has been estimated at about
2% in a population of over-65s (Bannerjee et al 2007). If the
population of over 65 in Hertfordshire was 167 100 (DoH POPPI
website) in 2009, this would lead to an estimate of 3 340 new cases
of dementia a year in Hertfordshire. We would not expect every
referral to a dementia diagnostic service to be correct before
diagnosis. Some people would have a milder condition, often called
Minimal Cognitive Impairment (MCI) and some would not have a
serious condition at all but be worried about their memory. Even if
attempts to screen and raise awareness are very successful, it still
likely that not all people with dementia would be referred. The DoH
pilot led to an estimate of seeing 600-800 new referrals a year for a
population of 50000 over 65s. This would equate to about 2100 for
Hertfordshire in 2009.
5.2
In the year April 2007 – March 2008 the Specialist Mental Health
Teams for Older People (SMHTOPs) of Hertfordshire Partnership
NHS Foundation Trust (HPFT) accepted 4163 referrals. In the
same period 1814 new outpatient referrals were accepted. Many of
these were for older people with functional mental health problems
(i.e. not dementia), we do not have separate figures, but we believe
that considerably more than half of these would be with dementia.
Many will be re-referrals rather than entirely new service users.
However, in summary it is likely that the total number of new
referrals seen by a new service would be less than the total seen
currently.
5.3
The NDS envisaged a new team dedicated to diagnosis of dementia
and early intervention. The document suggested 10 WTE staff from
a variety of professional disciplines for a population of 50000, i.e. 30
WTE for Herts. In the current financial climate, this large number of
new staff is unlikely to be forthcoming and we have had to focus on
working with the services we already have and making smaller
investments where there are gaps in current services.
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5.4
We currently have 9 memory clinics in Herts, so each would need to
see 200 to 400 new referrals a year. This is not an impossibly large
figure. This is less people than our current services currently see
with dementia. An important question is whether seeing people
earlier and making an earlier diagnosis will be entirely additional
work or whether an early diagnosis will prevent the need for later
crisis referrals. The reality is likely to be between either simple
extreme. The whole thrust of the NDS is that earlier diagnosis will
improve care in dementia and reduce the need for help in a crisis
and for 24 hour care. The NDS presents some evidence showing
that early take up of community services or intensive case
management can reduce the use of institutional care later.
However, it would be unrealistic to see all diagnostic visits to
memory clinic as one-off. If we diagnose Minimal Cognitive
Impairment, there is a high chance someone will develop dementia
later. We might need a number of assessments in this situation
before confirming a mild dementia. The drug treatment criteria of
NICE also impose a second threshold for repeat assessment. NICE
recommends drug treatment of moderately severe but not mild
Alzheimer’s disease. Memory assessment services will be asked to
repeat assessments until this threshold is passed.
5.5
In the DoH pilot in Croydon, it was estimated that 15% of referrals
to the new service were “shifted”, i.e. they would have previously
been seen by the old service. Taking away this group, there was a
63% increase in the rate of diagnosis of dementia when a new
dedicated service was set up in parallel to the Old Age Psychiatry
team.
5.6
A related issue is that support following diagnosis of dementia
needs to be improved. As above, our current services are currently
focussed on intervention later in the course of illness and on the
related behavioural and functional problems that come with more
advanced dementia. The other major focus of current services is on
delivering the 3 drugs which the National Institute for Clinical
Excellence (NICE) has approved for use with Alzheimer’s disease
in the NHS. It is not so much that current services would be unable
to deal with the above rate of referrals, it is more that they are
currently pre-occupied with prescribing and monitoring medication
for Alzheimer’s Disease and dealing with crises. The new service
envisaged by the NDS would have separated off the function of
early diagnosis and intervention in dementia from a traditional old
age psychiatry service and run in parallel. If we are going to
achieve similar results without a large investment in a whole new
team we need to think about how to use current resources more
efficiently.
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6.
Work in progress on new pathways for Early Intervention and
Diagnosis in Hertfordshire
Provisional New Care Pathway for Early Diagnosis and Intervention
in Dementia in Hertfordshire:
Independence
And
Wellbeing
Primary
Care
Dementia
Link
Nurse
Psychological
Treatment
Memory
Clinic
Drug
Treatment
Dementia
Advisers
Prevention
Direct
And/or
Emergency
Referral
Specialist
Mental
Health
Team
Intermediate
Care
Psychiatric
In-patient
Assessment
IOT
Day
Care
Specialist
Home
Care
General
Hospital
Liaison
Respite
Care
24 Hour
Care
The above is the care pathway we are developing for a future service in
Hertfordshire. This includes:

Separation of dementia diagnosis and treatment. Our current memory
clinics are largely dementia treatment clinics. The first point of referral for
a person with suspected dementia will be a single memory assessment
service. This will be able to work closely with dementia advisors (see
below).

Specialist link nurses will liaise between primary care and the specialist
mental health teams. They would advise primary care practitioners on
assessment and management of dementia, see some service users on
primary care premises and advise on appropriate referral to more
specialised services.
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
Dementia advisers will support service users and carers after a
diagnosis is made. They will be a single point of contact with dementia
services. Dementia advisers will have local knowledge about the
services available to people with dementia and their carers. They will be
available to people with dementia and their carers throughout the course
of the illness.

A nurse-led dementia drug treatment service. We will train more nurses
to take on the follow-up prescribing of the three drugs which NICE
recommends for moderately-severe Alzheimer’s disease. This will
release specialist doctors to spend more time on early diagnosis and
less on routine prescribing.

Psychological treatment for dementia. We have started running
Cognitive Stimulation Therapy groups in parts of the county and plan to
extend this to the whole county. This treatment has proven efficacy in
dementia and this may be of a similar magnitude to drug treatment. WE
are not limited by NICE guidance as to which groups can receive this
treatment.

High quality information for people diagnosed with dementia. There will
be information about dementia and its sub-types. There is also a need
for advice about Power of Attorney, Advance Directives, wills. People
will need to know about the benefits available. We will also tailor a
second set of information to locally available services which will vary
across Hertfordshire.

Peer support networks - Al’s Cafes. Peer support will allow people with
dementia and their carers to meet other people in this situation to share
information and provide mutual support. The Al’s Café provides an
informal drop-in setting on a regular basis where both people with
dementia and their carers will be welcome. There will also be
opportunities to make contact with and share learning with
professionals. In Hertfordshire, ACS and the Alzheimer’s Society have
been successful in a joint bid to be a demonstrator site for this service.

There will be explicit planning of future care at an early stage while the
person with dementia has mental capacity.
An important caveat is that this care pathway is still in development. We may
not in the end choose all the elements above and there will almost certainly
be additions.
7.
Recommendation
The Panel is invited to note and comment on the report.
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