2 Diagnosis and early intervention
7. There is clear evidence that early diagnosis and
intervention improve outcomes for people with dementia and their
carers. Between a half and two-thirds of people with dementia,
however, never receive a diagnosis: only 5 people per 1,000 were
diagnosed at age 65-69 in 2006, compared with an estimated actual
prevalence of 13 per 1,000, while in people over 80 years only
60 of the expected 122 were diagnosed. Many people with dementia
are not diagnosed until they go to hospital after an acute event,
but even in such cases an accurate diagnosis might not be made.
If the prescription rate of anti-dementia drugs (cholinesterase
inhibitors) in Alzheimer's disease is used as a proxy for diagnosis,
the UK compares very poorly with other EU countries, and indeed
is ranked in the bottom third of countries.[13]
8. There are a number of reasons for this poor diagnosis
rate. Lack of awareness amongst the public and fear of, or stigma
attached to, the disease means that people with the disease do
not seek a diagnosis. GPs may consider that they lack the skills
and/or confidence to make a diagnosis. Only 31% of GPs surveyed
by the National Audit Office agreed that they had received sufficient
basic and post-qualifying training to help them diagnose and manage
dementia. Although there is no known cure for the condition, there
is considerable scope for helping people with dementia which is
not well understood amongst professionals and the public. Whilst
the majority of GPs surveyed agree it is beneficial to make an
early diagnosis of dementia and look actively for early signs,
only half agree that providing a diagnosis is more helpful than
harmful or that much can be done to improve the quality of life
for people with dementia. Almost a quarter of GPs think dementia
patients are a drain on resources with little positive outcome,
an attitude which the Department acknowledges must change.[14]
9. Where GPs are not equipped to make a formal diagnosis
they should refer a patient to specialist mental health services.
Specialist services may be a multidisciplinary team offering specialist
assessment, treatment and care to older people with mental health
problems in their own homes and the community (Community Mental
Health Team (CMHT)); or a newer and more flexible specialist approach
to early diagnosis and intervention known as a memory service,
recommended by the NICE-SCIE guidelineas the single point of referral.
[15] There is
no international consensus however on which speciality within
medicine should take the lead in diagnosis and treatment of dementia.
The Department's dementia working group aims to address who should
make the diagnosis of dementia. Regardless of who this might be,
the Department agrees there should be greater involvement of mental
health services with GP practices to deal with all mental health
issues such as dementia, depressions, psychosis and anxiety.[16]
10. Diagnosis should always be made as early as possible,
regardless of whether interventions are available, to enable interventions
(as recommended by the NICE-SCIE guideline) to be offered to the
person with dementia and their carers and to allow them to make
plans for the future whilst they are still able to do so.[17]
Early diagnosis also enables people with dementia and carers the
opportunity to have some involvement in their care planning, which
our web forum found is currently poor. The Department recently
published a toolkit to help practitioners encourage proactive
involvement of people with dementia and their carers in care planning.
11. A diagnosis is often not communicated well. GPs
surveyed rated telling the patient the diagnosis as the third
most difficult of 10 aspects of dementia care. Focus group participants
consulted by the National Audit Office were often disappointed
in the manner in which GPs or specialists communicated the diagnosis.[18]
12. Many families report feeling abandoned following
diagnosis. The moment of diagnosis can and should be used to give
information and instil hope for the life that people with dementia
have afterwards. Despite NICE-SCIE guidelines which set out the
types of support and information needed to support someone with
dementia, the Department agreed that many families are left floundering
following diagnosis of dementia.[19]
13 Qq 8, 9, 36-38, 49-50, 64, 68-71; C&AG's Report,
paras 2.1, 2.2, 2.4, 2.27 Back
14
Qq 8, 33, 54; C&AG's Report, paras 2.5, 2.8-2.9; Figures 14
and 15 Back
15
Qq 34, 99; National Institute for Health and Clinical Excellence
and Social Care Institute for Excellence, Dementia: Supporting
People with Dementia and their Carers, 2006 Back
16
Q 34; C&AG's Report, paras 2.11-2.12, 2.16 Back
17
Qq 63-64; C&AG's Report, paras 4.9-4.10 Back
18
Q 99; C&AG's Report, paras 2.20-2.23 Back
19
Qq 11, 99; C&AG's Report, paras 2.23-2.25 Back
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