Activities that maintain personhood: how do we begin?

Jennifer Wenborn

Clinical Research Fellow in Occupational TherapyDepartment of Mental Health Sciences

University College London&

OT Co-ordinator North East London Mental Health NHS Trust

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

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

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)

What people with dementia need (Kitwood, 1997)

Comfort

LOVEAttachment

Inclusion

Occupation

Identity

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

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 BConsistent evidence that music decreases agitation during and immediately afterwards

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 DInconsistent evidence

• Remcare study

Cognitive Stimulation Therapy – the evidence

• Spector et al, 2001 and 2003Decreased depression / improved QOL‘Making a Difference’ Spector et al, 2006

• Cochrane review: Woods et al, (2005) Abstract stage

• Livingston et al, 2005 BMostly consistent evidence to show CST improves neuropsychiatric symptoms immediately and for some months afterwards

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 BConsistent evidence to demonstrate immediate amelioration of disruptive behaviour after MSE

What about …… ?

• Animals

• Aromatherapy

• Dolls

• Massage and touch

• And all the other ‘everyday’ activities …… ?

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

Providing activity is good practice:NICE Clinical Guideline (2006)

1.1.9.2 Training and development of health and social care staff: person’s life story,

individualising activities (p 17)

1.5.1.1 Promoting and maintaining independence, through: (p 28)

• Physical exercise• Support for people to go at their own

pace and participate in activities they enjoy

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)

BUT - remember ….

• LACK of EVIDENCE

does NOT equal

• LACK of EFFICACY

Does occupational therapy intervention for older people with dementia in a care home setting improve quality of life?

1 Assessing the validity and reliability of the PAL Checklist for use with older people with dementia

2 Cluster, single blind, randomised controlled trial (RCT)

Barking & Havering LREC 05/Q0602/8 and ISRCTN67952488

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)

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)

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

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

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?

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)

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

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

7 Practical activities (craft, domestic chores, gardening)

8 Use of objects

9 Looking at a newspaper / magazine

Eating

P Eats independently and appropriately using the correct cutlery

E Eats using a spoon and/or needs food to be cut up into small pieces

S Only uses fingers to eat food R Relies on others to be fed

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

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

The PAL Activity Levels: SENSORY

Primarily concerned with experiencing the sensation of the activity and moving their body in response

The PAL Activity Levels: REFLEX

Often unaware of surrounding environment, moves as a sub-conscious, reflex response to direct sensory stimulation

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