1. Cognitive Stimulation Therapy
Is it for me?
Thank you Dave Jolley for inviting me
This isn’t some I normally do – my husband suggested a joke I have two but the second might be hard to fit in.
How many civil servants does it take to change a light bulb? One and 45 to do the paperwork
Who has heard of CST?
Please ask questions as we go along however..

2. Background Event management and marketing Fronto temporal dementia
‘I would like to meet people in a similar situation’
I am not a medic and completed my scientific training over 20 years ago with a C grade O level in biology
I have no job title or company and have been working alone and unasked for, trying to raise awareness for CST.. some victories – NHS, mental health foundation, Alzheimers research trust and BUPA all now mention CST in their online dementia info and a few articles and a few set backs including Cease and Desist notices from Age Concern and Alzheimers society!
Will do my best to answer questions and will find out if I don’t know
Sales promotion, event management, CAB and on a school reading programme
Mum about 60 when I first noticed something not right – a few visits to GP eventually diagnosed as depressed and referred to a counsellor who after a few months suggested further tests. My mothers father is unknown so we are waiting to see if it’s genetic.

3. Cognitive Stimulation Therapy
CST developed by team at UCL
‘Treatment for people with mild to moderate dementia…
…The effects of CST appear to be of a comparable size to those reported with the currently available anti-dementia drugs.’
CST was designed following extensive evaluation of research evidence, hence is an evidence-based treatment. University College London has developed a simple, evidence-based, fun support programme for people in the early stages of dementia. It was proved to be effective in RCT’s (1) and found to be cost effective by LSE (2)

4. What is it?
CST a fun programme of activity sessions, designed to improve well-being and confidence
Sessions cover topics including food, current affairs, using money and word games
Implicit learning rather than explicit teaching
Multi-sensory stimulation is used
Each CST session follows a general theme, with choices of activities in order to cater to the interests of the group. Members give the group a name. Consistency is created between sessions through using the same warm-up activity, an RO board (containing information about the group) and having a 'theme song'. Some equipment needs to be brought or made for the programme. Sessions are as follows:
Physical games, sound, childhood, food, current affairs, faces % scenes, word association, being creative, categorising objects, using money, number games, word games,
The programme of activity sessions for small groups, based on person-centred principles, designed to improve well-being and confidence allowing participants to function at their maximum capability. The session, based on a repeated format Each is run to encourage implicit learning rather than explicit teaching; people are asked their opinions rather than for factual answers. Multi-sensory stimulation is used to stimulate all the senses thus assisting with concentration and the sessions follow a format helping to reduce confusion and build confidence.

5. Sample session - Food Opening (10 minutes)
Opening (10 minutes)
All members individually welcomed to the group by name
Draw attention to the name of the group
Remind everyone of the activity in the last session. As a group, sing together the group’s ‘theme song’, led by song leader (use song book or CD).
Name badges, photo sheets, group name and song or theme tune choosen – Old king Coles, Glenn Miller, Bright barmy nutters, mozart , Bunns Lane friendship group – sunshine
Activities at different levels depending on interests and capabilities of the group- and always need a back up activity

6. Discuss day, month, year, season, weather, time, name and address of the centre (use whiteboard).
Discuss something currently in the news (use newspaper, magazine or photograph)
Warm up
Play softball game for a few minutes –people may either state their own name, or, for the more able, the name of the person they are throwing the ball to. As the main activity is going to be food ask members to say their most or least favourite food when catching the ball.

7. MAIN ACTIVITY (25 to 30 minutes). Suggested activities:
Suggested activities:
Taste foods like cream soda, ginger beer, bread pudding, Bovril
Brainstorm food categories e.g. soups; meats; puddings; fish; vegetables).
Complete names of food items e.g. Yorkshire X; Bakewell X; self-raising X; name a food beginning with a particular letter.
Using priced real or miniature replica groceries give people a budget and a scenario to plan, e.g. dinner for four or categorise the foods e.g special occasions, savoury / sweet.
MAIN ACTIVITY (25 to 30 minutes).
Suggested activities:
Taste foods which act as memory triggers or have personal meaning e.g. cream soda, ginger beer, bread pudding, Bovril. Reminiscence is integrated into the programme, partly used as a means to orientate to the here and now. There is always a tangible focus - something for each person to look at, feel, hear or smell - aiding concentration. Creating consistency and continuity between sessions minimises confusion and can help to aid retrieval.
Brainstorm food categories on the whiteboard, listing as many as possible in each category (e.g. soups; meats; puddings; fish; vegetables).
Complete names of food items e.g. Yorkshire X; Bakewell X; self-raising X; name a food beginning with a particular letter.
Using real groceries or miniature grocery replicas which have been priced, give people a budget and a scenario to plan, e.g. dinner for four.
Using real groceries or miniature grocery replicas which have been priced, categorise the foods, e.g. for different mealtimes, special occasions, savoury / sweet.
Triggers:
Food groceries
Board
List of food items

8. CLOSING (10 to 15 minutes)
Thank everyone individually for attending and contributing to the session.
Summarise the discussion and ideas raised – seek feedback
Sing theme song again
Reminder of time and content of next session
Farewells

9. How was it developed?
Systematic review of the literature on the main non-pharmacological therapies
Reality Orientation
Reminiscence Therapy
Cognitive Rehabilitation
Validation Therapy
Multisensory Stimulation
CST was designed through systematically reviewing the literature on the main non-pharmacological therapies for dementia (2, 3). And pilot study
Reality orientation – presentation and repetition of time place and person related information
Reminiscence therapy – discussion about past using prompts within groups and by individuals
Cognitive rehabilitation – supports people to maximise individual potential through restoration of memory and developing compensatory strategies
Validation therapy – focuses on emotional meaning of what people say or do rather than factual content
Stimulating senses through sound, taste, touch, smell, and visual images – also argued that too much stimulation unhelpful.
The most effective elements of the different therapies were combined to create the CST programme, which was modified following a pilot study (4). CST was then evaluated as a multi-centre randomised controlled trial (RCT) in 23 centres (residential homes and day centres) (1).
The 201 participants with a diagnosis of dementia were randomly allocated to either CST groups or a 'no treatment' control condition. The results of the trial showed that CST led to significant benefits in people's cognitive functioning, as measured by the Mini-Mental State Examination (MMSE) and the ADAS-COG. These tests primarily investigate memory and orientation, but also language and visuospatial abilities. Because these outcome measures are used in the dementia drug trials, direct comparisons could be made.
Analyses suggested that for larger improvements in cognition, CST is equally effective as several dementia drugs. Further, CST led to significant improvements in quality of life, as rated by the participants themselves using the QoL-AD. There were no reported side-effects of CST.

10. Chat 12 month pilot with Age Concern Horsham Trained by Dr Spector
Funded by Awards for All
Recruited from the community
Carers course alongside
Very promising results
My parents live in Horsham in West Sussex which has one of the lowest rates on diagnosis of dementia in the country . 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: under 2 prescriptions per person per year, compared with top figures of between 5 and 12 we opened the groups to people with cognitive impairment or dementia and accepted self as well as agency referral. - Pathways through care for people with dementia in West Sussex: Final report Edana Minghella Deborah Klee June Commissioned by West Sussex PCT
( and I bought a copy bought a copy of the guide and after a year of talking to Alzheimers society and sending copies of the guide I teamed up with Elayne Dunn, who trained with Dr Spector and Age Concern Horsham. Cognitive help and therapy – Chat pilot for 30 people was run – 4 groups of 6-8 participants, under recruited? No drops out apart from for health reasons very promising increase although tiny sample and not great science 25% in first group and 20% in second the model which included a weekly carers course for the first 7 weeks with local experts benefits advisor, legal expert, OT, carers support, CPN, psychiatrist then, as the CST sessions moved from twice weekly to weekly the carers groups (one for each CST group) became monthly. So the carers still benefitted from a short break each week but with access to supporters at the start and finish of each session. Naively thought if successful funding would be made available – applauded by dementia task force which included commissioner but not able to fund the course – and the sessions though still ongoing are limping along.

11. UCL based research- people with dementia:
‘I noticed people becoming more fluent and you could see people trying to express themselves more’
‘we just enjoyed ourselves there’s an awful lot of laughter’
‘it helped all of us know we were in the same boat’
‘I can relax, the use of the visual aids helps think things through, we share the same problem and all like coming otherwise we wouldn’t be here.’
All quotes were recorded in Horsham as part of UCL based research into the impact of CST except the final one on the slide which was sent by . This research has not yet been written up. Letter from Charlotte – tried to include negative as well as positive but hard to find any negative comments about Chat.
‘over the time I noticed everyone becoming more relaxed and not having to be worried if you said the wrong thing’. ‘I feel more positive about life in general
‘the ladies who help us are very good and understanding and they never demean you so its pleasant and nobodies on edge, you just talk, if you don’t want to talk you don’t’
‘you feel like a little family’ ’the people that don’t manage so well we help’ “the group seemed to get together very well quite early, bearing in mind our ages’. ‘ I found it so worthwhile, I really enjoy it”

12. UCL based research - carers
‘There is no argument that my wife’s brighter’
‘He enjoyed being with other people he could relate to’
‘She’s started remembering things since coming to the group’
‘The value of the group has been to make him more animated and motivated’
It’s been wonderful to find an activity that matches both of our needs so well’
’He’s more outgoing, we began to think he was cosying in on himself’
When I picked him up he was always very animated and happy, he said how much he enjoyed it and he said I never thought retirement would be so much fun. He liked the other people in the group, he enjoyed the activities and found them stimulating’

13. Who is it for?
Recommended by NICE for people with all types mild-moderate dementia regardless of any anti- dementia prescription
Flexible should be tailored to suit capabilities and interests
For people with learning difficulties
First language
Young onset dementia
Designed for all people with mild-moderate dementia regardless of any anti-dementia prescription, the adaptable programme can be tailored to a variety of capabilities and interests and also for people with learning difficulties, in first language for people from bem communities and for people with young onset dementia. Developed and RCTs(2) by University College London ( where CST was found to be as effective as the anti-dementia drugs and the cost effectiveness positively evaluated by LSE(3). (1)The current 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".
(2)Spector 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: (3)Knapp 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:
MMSE score UCL

14. Where could it be run? Day hospitals, GP surgeries and memory clinics
Community locations by voluntary sector organisations
Sheltered housing and care homes
Based in day hospital, GP surgeries and memory clinics, in community locations by voluntary sector organisations (with funding), in sheltered and care homes, CST can be adapted to be delivered to a variety of ability groups and locations, each session has two levels that the activity can be run at and each can be further tuned depending on the abilities and interests of the group.
Any other applications?

15. How is it done? Courses can be run from guide: Making a Difference.
Facilitators - activity coordinators, psychologists, dementia care advisors, nurses, psychotherapists, occupational therapists. 
Open training is available through For Dementia (4.2.10)
In-house training can be arranged through Dr Aimee Spector at cstdementia.com
Courses can be run from the guide book Making a Difference costs £15 inc p&p  of running groups and dementia Facilitators come from a variety of backgrounds including activity coordinators, psychologists, dementia care advisors and occupational therapists.  Open training (theorectical) is available through in-house training can be arranged through and more trainers are starting to offer courses.

16. When can you start? CST is available now Simple to set up and run
Ongoing support - live well and independently
The initial course is 14 sessions run twice weekly
Continue with a weekly programme – MCST
The course also provides an umbrella for carers education, professional and peer support and regular short respite.
Funding?
CST is available now. Evidence based cost effectiveness proven and much needed The course is simple to set up and run and provides a much needed, fun, psychosocial, group activity, with measurable results that improves confidence and provides an ongoing support that enable people to live well and independently for longer. Short course OR ongoing? The initial course is 14 sessions run twice weekly (a 24 week maintenance programme is currently in research), it is possible to continue with a weekly programme using new ideas to provide ongoing support and help accessing more appropriate therapy and activities as required. The course also provides an umbrella for carers education, professional and peer support and regular short respite.
The loss of friends and social network was enormous – my mother had been social secretary for my parents and the family and there is such a stigma surrounding dementia that from being ladies captain at the golf club my parents now only see one couple from their previous group of friends. However they have made new friends through the CST group and the tai chi classes that they run for people with dementia.
funding?

17. Why CST? National Dementia Strategy – objectives & priorities:
Early intervention
Community personal support services
New deal for carers
Living well in care homes and effective workforce
Jointly commissioned.
WHY - CST helps meet objectives & priorities of the National Dementia Strategy including early intervention, community personal support services, new deal for carers, living well in care homes and effective workforce and can be jointly commissioned cognitive stimulation is the only non-pharmacological intervention to be recommended for cognitive symptoms and maintenance of function. As NICE only recommend drugs for people in the moderate stages of Alzheimer's disease, Cognitive Stimulation is the treatment of choice for people in earlier stages of dementia (with a Mini-Mental State Score above 20). (CHAT trial MMSE around 15 ) This points to the importance of CST being offered routinely in services. he principles of Person-Centred Care - treating people as unique individuals with their own personality and preferences - is essential when delivering CST therapy for people with dementia. For this reason, group members are often assigned a role within the group, according to their interests and abilities. People must be respected and involved throughout. Reminiscence is integrated into the programme, partly used as a means to orientate to the here and now. There is always a tangible focus - something for each person to look at, feel, hear or smell - aiding concentration. Creating consistency and continuity between sessions minimises confusion and can help to aid retrieval.

18. Why else? Great introduction to day services
Positive, pro-active, self management
Validated hard work of staff
Interesting, stimulating, easy & measurable
Informed learning and development – care plans
According to the dementia services manager at Alzheimers Society Barnet Margaret Dempsey who ran one of the research groups for MCST which finished
Everyone found the sessions very enjoyable –participants and facilitators.
Useful introduction to day service previous refusniks keen to try. Offered something positive that they could do – not reliant on partner or someone else, able to be proactive. Positive impact on staff who felt involved in something positive. Validated all their hard work and could see benefits on all people who came. Course was interesting stimulating and fun. Not difficult to do. Informs learning and development – useful fo acre plans feeding into day services

19. Compelling economic argument
‘Early diagnosis and treatment of Alzheimers Disease are not only socially desirable in terms of increasing economic efficiency, but also fiscally attractive from both state and federal perspectives...failure to fund effective caregiver interventions may be fiscally unsound’.
(Sager M, weimer D (2009). Early identification and treatment of alzheimer's disease: social and fiscal outcomes. Alzheimer's & dementia: the journal of the alzheimer's association. Doi: /j.Jalz
I was advised by dr John Hague from suffolk, who is mightily impressed, if a little miffed by the work of professor richard layard, to form a compelling economic argument for the mandarins and supporting people to live well independently longer would seem to make financial sense. The cost per participant family for first year (including the initial phase/assessment) is around £960* with subsequent years at £540*. This compares with the savings made through maintaining lower levels of dementia, Dementia UK, the 2007 report, estimated £16689 as the cost of caring for someone in the community with mild dementia, which rose to £25877 for someone with moderate dementia, an increase of £9188 pa. Although there has been little research it is considered that extending the mild phase of the condition will not extend the length of the illness.
Early support for people with dementia and their carers has important social and fiscal benefits, according to a recent American paper 'early diagnosis and treatment of Alzheimers Disease are not only socially desirable in terms of increasing economic efficiency, but also fiscally attractive from both state and federal perspectives...failure to fund effective caregiver interventions may be fiscally unsound'.(Sager M, Weimer D (2009). Early identification and treatment of Alzheimer's disease: Social and fiscal outcomes. Alzheimer's & Dementia: The Journal of the Alzheimer's Association. doi: /j.jalz Please let me know if you would like a copy ing.

20. Next Steps? How can we increase access to CST programmes?
Before any further questions ?
Is this something that is being used?
The team at UCL believe CST is widely known
What % of people who might benefit are offered CST?

21. CST - further information:
- guide book £15 incl p&p
- next open course £110pp
Hedgehogs – why can’t they just share the hedge?