1. Living well with dementia
Extending the evidence base for
Cognitive Stimulation Therapy (CST)
This is the story of 25 staff setting off into the unknown territory of participating in a multi site research trial –

2. What is CST ? World Alzheimer’s Report 2011: Cochrane review 2012
A structured group intervention for people with mild / moderate dementia
Recommended in the NICE guidelines for Dementia (2006)
World Alzheimer’s Report 2011:
“CST should be routinely offered to people with early stage dementia”.
Cochrane review 2012
Established benefits of CST:
Cognitive functioning ( improvements equivalent to the anti dementia drugs)
Quality of Life /wellbeing
Mood/confidence
Provided in most KMPT Memory Assessment Services
Not sticking electrodes in the brain…

3. What is CST ?
It comprises 14 group sessions covering a series of themed activities aimed at stimulating specific cognitive processes e.g. executive functioning, language
Themed activities include: Food, childhood, sounds, categorising objects, current affairs, using money
Orientation and memory are addressed indirectly to avoid experiences of failure
It is delivered in an inclusive and empowering way allowing choice
It aims to provide a pleasurable experience- fun
Specific staff training required is minimal: Brief manual provided and maximum 1 day training course

4. Local interest
Extending CST groups beyond 14 sessions- seems beneficial
What training is needed for staff to be effective?

5. SHIELD Support at Home, Interventions to Enhance Life in Dementia
3 Cognitive Stimulation Therapy studies
University College London
Prof Martin Orrell
Study advertised - on the national portfolio of research – multi site study

6. The research projects
Study 2 : Evaluation and Comparison of the Effectiveness of Staff Training in Maintenance CST- staff are the “ subjects”
Study 3 : What is the effect of providing 24 weeks of maintenance CST over and above standard CST ( 14 sessions) ?
Lo and behold – address local interests. Mention both studies but focus on study 3 – evaluating maintenance CST

7. Why get involved ? Benefits for :
me: Service line role to promote research; help develop the psychosocial evidence base
service users: enhance provision and quality of CST across the trust; provide extra treatment
for staff: use their therapeutic skills ,develop research experience ; extra staff training in CST
for the trust : reputation; FT research requirements ; research targets
Looks interesting, but how would I sell this ?

8. Getting started Summer 2011 Identify the local PI :
Negotiations between UCL & KMPT & CLRN
Local Research Approvals
Identify “interested” sites and staff
Are we up for it?- local R&D approval process

9. The cast
5 sites – Tunbridge Wells ,Thanet, Maidstone, Canterbury and Sittingbourne
24 staff - OTs , Nurses, support workers, therapy technicians, assistant psychologist
Research nurse- K&M Comprehensive Local Research Network( CLRN)
- none had previous research experience

10. Summer 2012 Lift off …. Induction to the studies from UCL researcher
24 Staff consent for study 2
22 Staff complete baseline questionnaires

11. Hugely frustrating – IT issues …

12. The “ real” study – study 3
Recruitment of participants from those who’ve recently received a diagnosis of dementia in Memory Assessment Services.
46 people screened
38 people consented
38 Baseline assessments completed : QoL- AD; CDR; MMSE
Screening : identifying those who met inclusion criteria; Informed consent ; Baseline assessments-more than usual clinical practice .

13. Forms…
Tough for staff…

14. What then?
5 groups started and ran for 14 sessions +24 sessions maintenance
Groups involved about members
Assessments completed at baseline, end
of 14 sessions and end of 24 maintenance sessions for research participants.
But persevered and signed up 38 people (89 needed for whole study )almost 50%

15. Autumn 2013 All CST groups have finished
18 follow up assessments are completed so far (5 dropped out due to ill health/ died)
UCL study team doing a focus group with 9 staff to hear their observations
18 Staff have completed their final on line assessments – study 2 ( 22 staff started)
Where are we now?

16. The outcomes for participants
Formal data not yet analysed, but
Locally, staff observed improvements in
confidence
social functioning
skills
mood
i.e. Living better with dementia

17. The staff experience
My observations of staff- A mixed experience for staff – varied over time

18. How was it? The voices of some participants Heidi Suzanne
Lets hear how some of those involved have experienced it

19. What have we learned ? Research takes time and energy
KMPT staff can really step up to the plate- but exhausting without a research supportive environment
5 sites and 2 studies at once was maybe over ambitious !

20. What next….. Plans to engage with new multi site study -IDEAL
Develop our own research study and get research funding to implement it

21. Thanks for listening