1. Cognitive Stimulation Therapy – An update on research and practice Dr Joshua Stott Senior Clinical Tutor, UCL Clinical Psychology Doctorate/ Alzheimer’s Society Clinician Research Training Fellow – With thanks to Aimee Spector for allowing me to use and adapt her slides

2. Background Dementia traditionally conceptualised from a medical perspective (Lyman, 1989). Considered an organic disease for which assessment, diagnosis and treatment guided by medical interventions. Prior to the late 1990’s, no psychological interventions with a robust evidence-base. “Tacrine and psychological therapies in dementia: No contest?” (British Journal of psychiatry, Orrell & Woods, 1996)

3. A biopsychosocial approach e.g. Orrell and Spector (2010)

4. What is CST? A brief, evidence-based group intervention for people with mild to moderate dementia. 14 themed sessions, typically twice a week for 7 weeks. Includes word association / categorisation, current affairs, food, number games. Key aims: to improve cognitive functioning through using techniques that exercise different cognitive skills. Achieved through a variety of means including tasks tapping specific cognitive skills e.g. language/executive functioning and specific practices such as multi-sensory stimulation and reminiscence as an aid to orientation. Based on concept of ‘use it or lose it’: brain needs to be exercised in order for skills to be retained. Improved cognitive functioning is associated with increased quality of life

5. MRC framework for complex interventions (Craig et al, 2008)

6. Development of CST: the steps Stage 1: Cochrane systematic reviews Stage 2: Literature reviews to guide development of intervention Stage 3: Pilot study -> modification Stage 4: RCT evaluating effectiveness of CST (including i. cost- effectiveness analysis and ii. direct comparison with drugs) and qualitative work. Stage 5: Implementation work (website, manuals, training, implementation research) Stage 6: Long-term follow-up (MCST trial) Stage 7: How does it work, who for, in what conditions?

7. Stage 1: Cochrane reviews Two key psychological interventions for dementia identified in the literature: Reality Orientation and Reminiscence. Reality Orientation: The presentation and repetition of time, place and person related information, group and 24 hour settings. Cochrane review showed evidence for its effectiveness in cognition and behaviour (Spector et al, 1998). Reminiscence: Discussion about the past, often using prompts (e.g. pictures, objects, music) with groups or individuals (e.g. life review). Focuses on long-term memory, relatively preserved in dementia. Cochrane review(s) (Spector et al, 1998; Woods et al, 2005) showed evidence for effectiveness in cognition and mood.

8. Stage 2: Literature reviews to develop intervention We also reviewed evidence on other key psycholological therapies, e.g. Validation Therapy (e.g. Feil, 1992) and Multisensory Stimulation (e.g. Baker et al, 2001). Evaluated quality of research and focused on papers showing strongest methodology and outcomes. Attempted to identify best features of each therapy and combine into a single programme. Named ‘CST’ as it was largely based on Breuil’s ‘Cognitive Stimulation’ (1994)

9. Stage 3: Pilot study Pilot programme evaluated with 27 people (17 treatment, 10 controls) in four settings (Spector et al, 2001). 45 minute group sessions(5-8 per group). Within broad themes there are flexible activities to cater for group’s needs and abilities. Positive trends in cognition, anxiety and depression. Used outcomes to modify programme, including increasing cognitive element. Modified into 14 session programme, twice a week for 7 weeks.

10. Stage 4: What does it do?: RCT Multi-centre, single-blind, RCT (Spector et al, 2003). 201 participants with dementia in 23 centres (18 residential care homes, 5 day centres). Results Significant improvement in cognition using MMSE (p = 0.04) and ADAS-Cog (p = 0.01) (comparing CST with TAU). ADAS-Cog: trends in all subscales (memory, language, praxis) but only significant subscale was language (including naming, word-finding and comprehension).

11. Stage 4: What does it do? RCT Results: Significant improvement in quality of Life using the Qol-AD (brief, self-rated measure covering 13 areas of QoL) comparing CST to TAU (p = 0.03). No significant change in functional ability (CAPE-BRS), depression (Cornell) or anxiety (RAID). Communication (Holden): positive trends (p = 0.09). CST shown to be comparable to dementia medication (cholinesterase inhibitors – Rivastigmine, Galantamine, Donepezil) using a ‘numbers needed to treat’ analysis. CST shown to be cost effective, in study run in conjunction with London School of Economics (LSE) (Knapp et al, 2006).

12. Stage 4 What does it do?: Qualitative Research 34 participants (people with dementia, carers and staff) participated in individual interviews and focus groups (Spector et al, 2011). Asked about experiences of CST – positive or negative. Key themes emerging: Positive experiences of being in group (e.g. supportive and non- threatening). Changes generalised into everyday life: improvement in mood and confidence (finding talking easier), changes in concentration and alertness (wanting to attend to things more).

13. Stage 5: Implementation work Published 3 manuals (Spector et al 2005, Spector et al 2006, Aguirre et al 2012) Developed CST website: www.cstdementia.comwww.cstdementia.com Developed one-day CST training course. Research trial on implementation (Streater et al, 2014) – looked at effects of manual, training and outreach support on implementation.

14. The UK manuals

15. Stage 6: Long-term follow-up (MCST trial) Big question: what happens next? (Orrell et al, 2014) 237 people with mild to moderate dementia who had previously received CST (14 sessions). Intervention: weekly, 24-session programme of Maintenance CST (MCST) compared to TAU. MCST group significantly improved in quality of life at 3 and 6 months, and in activities of daily living at 3 months.

16. Stage 6: Long-term follow-up (MCST trial) Cognition was higher in MCST group but the difference was not significant. Greatest improvements in the medication plus MCST group. Conclusions: There is good evidence for the benefits of continuing CST beyond the initial programme. Whilst people are still willing and able, CST should be continued.

17. NICE guidelines ( 2006) “People with mild / moderate dementia should be given the opportunity to participate in a structured group cognitive stimulation programme. Should be commissioned and provided by a range of health and social care workers with training and supervision. Should be delivered irrespective of any anti-dementia drug received.”

18. Stage 7: How does CST work? We know CST does work but we don’t know how – Some ideas: Specific facilitation techniques? Using reminiscence as an aid to the here and now. Providing triggers to aid recall, e.g. multi-sensory cues, RO board Continuity and consistency between sessions helps support memory Implicit (rather than explicit) recall famous faces Using orientation, but sensitively and implicitly Opinion rather than facts (which supports idea of validation) Aims to be mentally stimulating, yet for people to feel empowered rather than de-skilled Always encouraging new ideas / new thoughts / new associations.

19. Stage 7: How does CST work? CST Improves specific neuropsychological functions? Language (Hall et al. 2013) (various sessions but explicitly ) Memory(Hall et al.2013) (various sessions some as above) Executive function (similarities and differences, task planning and executing, categorizing) CST provides overall stimulation of cognition? The mechanism of action is due to general group factors:- social factors, person-centred care, working against a ‘Malignant Social Psychology’ (Kitwood, 1993) Do we need more evidence? Is it helpful to know?

20. Stage 7: What might optimise efficacy? Carer support? – perhaps doesn’t help (Cove et al. 2014) Session frequency? – Twice a week better? (Cove et al. 2014) Other factors (gender, age, setting???) (Aguirre et al. 2013)

21. Use of CST in the UK National Memory Services Accreditation programme (NMSAP) audit (2015): CST used in 85% of UK memory clinics. CST training : over 137 courses, mainly commissioned by NHS trusts, around 3000 people trained in CST. Care home residents – the forgotten people?

22. CST internationally The World Alzheimer’s Report (Alzheimer’s Disease International, 2012), stated that CST should routinely be given to people with early stage dementia. ‘International research centre at UCL’. https://www.ucl.ac.uk/international-cognitive-stimulation-therapy Recently published guidelines for adapting CST to other cultures (Aguirre et al, 2014), drawing from our work in Japan (Yamanaka et al, 2013), Nigeria and Tanzania, and UK translation into Swahili. CST manual has been translated into several languages CST is used in a number of different countries

23. Conclusions CST is effective We don’t really know why or how it works and are starting to think about who it works for and under what conditions. It is widely implemented For all references, see CST website: www.cstdementia.com www.cstdementia.com

24. Acknowledgments and references Aimee Spector for slides Alzheimer’s society for fellowship funding For references see the CST website http://www.cstdementia.com/http://www.cstdementia.com/