1. Activities that maintain personhood: how do we begin? Jennifer Wenborn Clinical Research Fellow in Occupational Therapy Department of Mental Health Sciences University College London & OT Co-ordinator North East London Mental Health NHS Trust

2. What is activity? It is anything and everything that we do It is not just specific, organised events It can be: physical or mental; everyday or special; work, self-care or leisure Choice of activity is personal to each individual We all differ in what we enjoy doing

3. WHY is activity important? ‘Characteristic of and essential to human existence’ (COT, 2003) Essential to maintain physical & mental health and well-being Physical and psychological benefits Inactivity has detrimental effect on physical & mental health

4. Meaningful activity is good for us Adds life to the years that doctors add to life ‘Absence of occupation is not rest. A mind quite vacant is a mind distress’d’ (William Cowper) ‘The absence of meaningful activity could be interpreted as abuse’ (Crump, 1991)

5. What people with dementia need (Kitwood, 1997) Comfort LOVE Attachment Inclusion Occupation Identity

6. What evidence supports activity and people with dementia? RCTs, case studies Cochrane systematic reviews Livingston et al, (2005) Systematic Review of Psychological Approaches to the Management of Neuropsychiatric Symptoms of Dementia. American Journal of Psychiatry, 162, 1996-2021

7. Music – the evidence Lou, 2001 Evidence that music is useful Cochrane Review, Vink et al, 2003 5 studies, poor quality, could not pool results, could not draw conclusion Livingston et al, 2005 B Consistent evidence that music decreases agitation during and immediately afterwards

8. Reminiscence Therapy – the evidence Cochrane review, Woods et al, 2005 Improved cognition and mood at follow-up, reduced caregiver strain but.. small studies (144 participants in total), so more research needed Livingston et al, 2005 D Inconsistent evidence Remcare study

9. Cognitive Stimulation Therapy – the evidence Spector et al, 2001 and 2003 Decreased depression / improved QOL ‘Making a Difference’ Spector et al, 2006 Cochrane review: Woods et al, (2005) Abstract stage Livingston et al, 2005 B Mostly consistent evidence to show CST improves neuropsychiatric symptoms immediately and for some months afterwards

10. Multi Sensory Environments – the evidence Baker et al, 2001 MSE & activity beneficial, only MSE effect @ home Baker et al, 2003 MSE no more effective than activity in changing behaviour in short or long term Cochrane Review, Chung & Lai, 2002 2 RCTs on short term effects, small sample sizes & different methodologies. Need more research Livingston et al, 2005 B Consistent evidence to demonstrate immediate amelioration of disruptive behaviour after MSE

11. What about …… ? Animals Aromatherapy Dolls Massage and touch And all the other ‘everyday’ activities …… ?

12. Why is evidence difficult to generate? Study design: RCT v single case study Small sample size / non randomisation Lack of standardised intervention Lack of standardised protocol Lack of validated outcome measures Other factors can influence behaviour

13. Providing activity is good practice: NICE Clinical Guideline (2006) 1.1.9.2Training and development of health and social care staff: person’s life story, individualising activities (p 17) 1.5.1.1Promoting and maintaining independence, through: (p 28) Physical exercise Support for people to go at their own pace and participate in activities they enjoy

14. Non pharmacological interventions for: cognitive symptoms and maintenance of function; behaviour that challenges; comorbid agitation (NICE, 2006) Structured group cognitive stimulation programme ‘Access to interventions tailored to the person’s preferences, skills and abilities, for example: aromatherapy, multisensory stimulation, therapeutic use of music and/or dancing, animal- assisted therapy, massage. Because there is some evidence of their clinical effectiveness. More research is needed into their cost effectiveness.’ (p 33-34)

15. BUT - remember …. LACK of EVIDENCE does NOT equal LACK of EFFICACY

16. Does occupational therapy intervention for older people with dementia in a care home setting improve quality of life? 1Assessing the validity and reliability of the PAL Checklist for use with older people with dementia 2Cluster, single blind, randomised controlled trial (RCT) Barking & Havering LREC 05/Q0602/8 and ISRCTN67952488

17. The PAL Study: Method Questionnaire to 122 activity providers / experts COTSS-OP, NAPA, others 60 older people with dementia assessed using:  Pool Activity Level Checklist  Mini Mental Status Examination (MMSE)  Barthel Index (BI)  Bristol Activities of Daily Living Scale (BADLS)  Clifton Assessment Procedures for the Elderly - Behaviour Rating Scale (CAPE-BRS)  Clinical Dementia Rating Scale (CDR)

18. The PAL Study: Conclusion The PAL Checklist demonstrates strong validity and reliability, making it ‘fit for purpose’ in a practice setting and as a research tool (Wenborn et al (2008) Assessing the validity and reliability of the PAL Checklist. Aging & Mental Health, in press)

19. Cluster, single blind, randomised controlled trial (RCT)  210 residents in 16 care homes (8 pairs) across London  Residents assessed at: baseline, 1 and 3 months post intervention  Primary outcome measure:  Quality of life (QoL-AD)  Secondary outcome measures:  Dependency (CAPE-BRS)  Behaviour that challenges (CBS)  Depression (Cornell)  Anxiety (RAID)  Medication

20. Occupational Therapy intervention  Assess environment + make recommendations to enhance / enable residents' engagement in activity  Provide 5 x 2 hour staff education sessions: Life History, using the PAL Checklist and IAP, understanding activity, interventions – plus  1:1 sessions with staff and residents  Staff complete work-based learning tasks with two residents each to put knowledge and skills into practice  Sessions 6&7, staff & manager agree an Action Plan for continued implementation of the programme

21. Successful activity provision Get to KNOW the PERSON  What s/he did in the past - Life history work  Current ability to engage in activity (PAL) MATCH the ACTIVITY to the PERSON  Is it personally meaningful?  Does it ‘fit’ with the individual’s ability?

22. Life history – what did they do and why?  Select personally meaningful activities  Inform the care planning process  Understand behaviour  Provide individualised care  Continuity of care  Orientate to the present / life review and reminiscence  Resident, staff, family & friends can do together BUT – confidentiality must be respected (Murphy, 1994)

23. What level of ability does the person have? The Pool Activity Level (PAL) Instrument for Occupational Profiling (Pool, 2008)  PAL Personal History Profile  PAL Checklist  Individual Action Plans for personal care activities  PAL Activity Level Profile  Outcome Sheet for recording results

24. The Pool Activity Level (PAL) Checklist (Pool, 2008) 1 Bathing / washing 2 Getting dressed 3 Eating 4 Contact with others 5 Groupwork skills 6 Communication skills 7Practical activities (craft, domestic chores, gardening) 8Use of objects 9Looking at a newspaper / magazine

25. Eating PEats independently and appropriately using the correct cutlery EEats using a spoon and/or needs food to be cut up into small pieces SOnly uses fingers to eat food RRelies on others to be fed

26. The PAL Activity Levels: PLANNED Can work towards goal directed activities with a tangible outcome, but may not be able to solve problems that arise

27. The PAL Activity Levels: EXPLORATORY Can carry out familiar activities in familiar surroundings, but more concerned with the effect of doing the activity than the final outcome

28. The PAL Activity Levels: SENSORY Primarily concerned with experiencing the sensation of the activity and moving their body in response

29. The PAL Activity Levels: REFLEX Often unaware of surrounding environment, moves as a sub-conscious, reflex response to direct sensory stimulation

30. Acknowledgements  Professor Martin Orrell, University College London  Professor David Challis, University of Manchester  OT service, R&D Directorate, colleagues, particularly Jane Burgess & Nikki Elliott, & service users, NELMHT  HSA / College of Occupational Therapists 2005 PhD Scholarship Award j.wenborn@ucl.ac.uk