programme for dementia is claimed to be effective as drugs. Plus,
its recommended by the National Institute for Health and Clinical
Excellence. But it's not available, so failing thousands of patients
and their carers, says Joanne Knowles.
my mother was diagnosed with dementia at the age of 65, she asked
to meet people in a similar situation. It was while looking for
a way to make this happen that I came across Cognitive Stimulation
Therapy (CST), a psychosocial therapy programme, recommended by
NICE (1) for all people with mild-moderate dementia since 2006.
I ordered the guidebook and contacted the local Alzheimers Society.
I offered to find funding and a venue if they would deliver a course.
A year later and after a few false
starts, I teamed up with
Age Concern Horsham, with support from Awards
for All, to set up a one-year pilot which offered ongoing CST
combined with a carers' information course.
is a series of fun activity sessions for small groups of 6-8 people,
based on person-centred principles, designed to improve well-being
and allow participants to function at their maximum capability.
The sessions cover topics including
food, current affairs, using money and word games. Each is run to
encourage implicit learning rather than explicit teaching, people
are asked their opinions rather than for factual answers, and multi-sensory
stimulation is used to stimulate all the senses thus assisting with
concentration. By creating continuity and consistency between sessions
it helps to reduce confusion and helps to aid retrieval. It is a
simple and effective evidence-based therapy. It is adaptable to
group capabilities, can be used in care homes, sheltered accommodation,
day services and the community. But without the might of a pharmaceutical
company, it remains little known and rarely offered.
In the Sussex pilot we offered CST
on an ongoing basis (there are still weekly sessions 16 months on),
extending the session time from 45 minutes to 90 minutes. This included
social time in the Age Concern Cafe. We offered a weekly carers'
course alongside the initial period. This became a monthly peer
support meeting where carers could either share experiences or invite
a speaker. We asked for a donation of £3.50 a session to help
Because of the very low diagnosis
of dementia in West Sussex (using prescribing rates of anti-dementia
drugs as a proxy for diagnosis, West Sussex has one of the lowest
rates in the country (2)) we opened the groups to people with cognitive
impairment or dementia and accepted self as well as agency referral.
The ongoing contact allows for help
signposting and accessing further support as required, so reducing
the need for crisis care. Being based in a non-medical setting also
helped normalise the situation for participants and carers. It also
helped reduce stigma within the Age Concern lunch club members who
were able to people with dementia having fun. It also helped improve
the Age Concern staff dementia awareness.
I had assumed that if it was successful
the local statutory funders would take over, or Alzheimers Society
would pick it up. I have been amazed and frustrated by the negative
When we presented details of the
pilot to the local statutory funders they applauded the scheme,
and were delighted to find something that met so many of the needs
of people in the early stages of dementia. But, possibly overwhelmed
with end-of-life care costs, refused help with funding and have
no plans to support CST in Sussex.
Alzheimers Society is a group of
local charities with a central national body. They have ignored
CST since it was introduced and despite many emails and calls it
still claims that the evidence is inconclusive. This is despite
RCTs (3) which show CST is as effective as anti-dementia drugs and
led to significant improvements in quality of life. I have asked
what their concerns are. But I have yet to receive a reply.
Why, despite all the rhetoric, are
services generally so poor? There are good intentions in the National
Dementia Strategy (NDS).
But the funding is a shambles. The PCT budgets were allocated in
the normal way for 2009. Then, in February, the NDS was launched
and PCTs were told that between them they had been allocated £150m
within the 2009 budgets. It was up to the PCTs to decide how much
they had been allocated and how they wanted to support dementia
services. No new cash, no formula for distribution and no ring-fenced
budget. Is the acceptance of poor service provision due to the classification
of people with dementia as 'economically inactive'? They are old
in a society that values youth and fears mental health problems
- have they become today's 'untouchables'?
Much of the costs of caring for
someone with dementia falls to the family - and so perhaps the decision
has been taken to maintain this cruel status quo. I don't subscribe
to the 'love dementia' approach that seems to have been adopted
by many organisations, but I wish we could show more love and support
for people with dementia, helping them enjoy and make the most of
opportunities in the earlier stages of the disease instead of sending
them home with an information pack on incontinence and choking,
to become invisible, isolated and depressed.
I am struggling to see the merits
of improving diagnosis rates for people with dementia when they
are so often treated in this way.
How does the academically developed
and proven therapy of CST make it into practice? University College
London has produced a user-friendly guide which is available at
£13.50. They have published results, offer training, and the
cost effectiveness of the programme has been positively evaluated
by the London School of Economics (4). Plus, they have secured a
NICE recommendation. But there would seem to be very little awareness.
Neither CST, nor any psychosocial therapy, was mentioned in the
National Dementia Strategy. It feels as though this useful therapy
is being overlooked in the search for new pharmaceutical interventions
and routes for research, when surely we need to support people now
with what we have whilst looking for better and bigger treatments.
As Dr Steve Iliffe at University
College London said "innovation diffuses slowly unless it has
powerful champions". Can we only offer help through a prescription
pad? Who should be championing CST?
PCTs all over the country are busy
formulating plans and doing mapping exercises - reinventing wheels
in all shapes and sizes, spending their budgets on management meetings
and experts whilst continuing to ignore a therapy that is cost effective,
simple to provide and available. Obviously resources are finite
but we are judged by how we look after the most vulnerable and it
seems to me that people with dementia, and their often elderly carers,
are being failed every day, in their thousands.
Knowles is an adviser with the Citizens Advice Bureau and a carer.
NICE guidelines on dementia from November 2006 state that: "People
with mild / moderate dementia of all types should be given the opportunity
to participate in a structured group cognitive stimulation programme.
This should be commissioned and provided by a range of health and
social care workers with training and supervision. This should be
delivered irrespective of any anti-dementia drug received by the
person with dementia".
through care for people with dementia in West Sussex: Final report
Edana Minghella Deborah Klee June 2008. Commissioned by West Sussex
A, Thorgrimsen L, Woods B, Royan L, Davies S, Butterworth M and
Orrell M (2003). Efficacy of an evidence-based cognitive stimulation
therapy programme for people with dementia: Randomised Controlled
Trial. British Journal of Psychiatry, 183: 248-254.
M, Thorgrimsen L, Patel A, Spector A, Hallam A, Woods B and Orrell
M (2005). Cognitive Stimulation Therapy for people with dementia:
Cost Effectiveness Analysis. British Journal of Psychiatry: 574
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