Evaluating reminiscence work Bob Woods Bangor University Wales, UK b.woods@bangor.ac.uk
Reminiscence Therapy for people with dementia Strong tradition of use of RT for people with dementia (e.g. pioneering work by Faith Gibson, 1994, 2004 etc.) Popular with people with dementia and care-workers First National Life Story Network conference, Leeds 2010 www.lifestorynetwork.org.uk Variety of aims Enjoyable activity? Encourage communication? Life review therapy Maintain identity
A framework for evaluation What is the purpose of the evaluation? What do we think we are doing? What difference will it make? When will it make a difference? Who will be changed?
What is the purpose of the evaluation? To improve the quality of our service Seeking feedback from a variety of perspectives Reflecting, learning, refining, developing, re-creating To show significant others the value of what we are doing Commissioners Practitioners in the field Evidence-based practice a useful tool here but randomised controlled trials (RCTs) come at a late stage in evaluation
Evaluating reminiscence - evidence- based practice Can psychosocial approaches be subjected to same form of evaluation as we require of new drugs? They are not so easy to package Can rarely be double blind A placebo therapy is not always easy Without controlled trials difficult to know if you are making a difference in a condition where decline is the expectation What works for whom is most important question But important, for some purposes, to have evidence-base to draw on E.g. Cochrane reviews important sources of information Evidence-based guidelines e.g. NICE-SCIE Guidelines on management of dementia in the UK
What do we think we are doing? Conceptual roots Autobiographical memory It is an inescapable fact about human existence that we are made of our memories; we are what we remember ourselves to be (Casey, 1989) relates to sense of identity preservation of remote memories? possible disconnection from early memories Life review Erikson integrity v despair Person-centred care the unique life story and biography of the person with dementia (cf. Kitwood) Relationship-centred care identity is maintained through interpersonal relating
What difference will it make? Possible outcomes: Cognition perhaps specifically autobiographical memory Quality of life / well-being Improved mood Quality of relationship Communication / social contact Staff knowledge and perceptions of the person
When will it make a difference? Here and now Later the same day For days, weeks and months to come (Afterwards.)
Levels of engagement of patients with severe dementia in reminiscence groups and in normal ward activities in 3 settings (McKiernan & Yardley, 1991) 80 70 60 50 40 30 20 10 0 Hospital 1 Hospital 2 Day hospital Reminiscence Ward
Life review and people with dementia (Morgan & Woods, 2010) Randomised controlled trial 17 people with mild or moderate dementia (average age 83) Admitted to residential / nursing home care in last 18 months (average 8 months) Intervention group took part in life-review using Haight s s Life Review Experiencing Form chronological evaluative
Life review and people with dementia Around 12 sessions per resident Life story book created for each resident Resident had editorial control Input sought from person s s family Control group - no additional input Measures included Geriatric Depression Scale (15 item version) Autobiographical Memory Interview
Life review to assist adaptation to residential care RCT - GDS-15 scores 9 8 7 6 5 4 3 2 1 0 Pre-test Post-test 6 week FU Life Review (8) Control (9)
Life review to assist adaptation to residential care RCT - Personal autobiographical memory scores 40 35 30 25 20 15 Life Review (8) Control (9) 10 5 0 Pre-test Post-test 6 week FU
The impact of life review - John Yes, I have remembered a lot more today, but that s s because the book sets things off in my head, it helps me remember all sorts of things and reminds me of things I have forgotten John at follow-up (age 83 - moderate dementia) GDS fell from 11 to 6
The impact of life review - Sian Initially I ll have a go, but I don t want to tell lies; the doctor says I ve I got something beginning with D,, and that s s why I m Im here Didn t t enjoy early sessions -found it difficult to remember the loved ones she had lost. Later - proud of her son and grandchildren; more positive about here and now
The impact of life review Sian (2) Follow-up: Everyone who has seen the book loves it! People keep coming to my room to see it. My son thinks it s wonderful - he wants to keep it after I die - he s s really proud of me and what I ve I done with my life. I ll I have to keep an eye on it, in case someone takes it. Sian - age 79, mild dementia; initial GDS - 9; final GDS 3.
Northern Ireland project Haight et al. (2006) Production of a life storybook, based on an individual structured life review. Carried out by care staff, who received training and weekly supervision. 31 people with dementia participated, 16 randomised to receive treatment as usual. Improvements favoured the reminiscence group in terms of depression, communication, positive mood and cognition (MMSE)
Developing life story work How important is the process of life review as opposed to the tangible life story product? Alternate products: Memory boxes Multi-media systems Evaluation at an early stage feasible Massimi et al (2008): ambient biographical display
Who will be changed? The person with dementia The person s s family carer The relationship between them Care workers
Remembering Yesterday Caring Today (RYCT) Originally developed by Age Exchange (Reminiscence Theatre charity), led by Pam Schweitzer, in context of European project Active, large group approach, involving people with dementia and carers together Volunteers also participate Lots of materials, activity, music, dancing, laughter refreshments & sense of occasion Family members encouraged to facilitate not dominate
RYCT Sessions Introductions names and places Childhood and family life School days Starting work Going out and having fun Courting & marriage Homes, gardens & animals Food & cooking The next generation babies & children Holidays and journeys Festivals & special days Rounding up & evaluation
Remembering Yesterday, Caring Today (RYCT) projects
MRC Trial Platform April 2004 May 2006 (Bangor, Bradford and UCL) To refine RYCT intervention and develop treatment manual (12 sessions) To develop and validate outcome measures Extended autobiographical memory interview Quality of communication Pragmatic randomised controlled trial (RCT) Control groups treatment as usual; reminiscence for people with dementia alone Inclusion criteria Diagnosis of mild or moderate dementia Receiving care from relative or friend willing to attend treatment sessions Absence of severe physical health problems, severe uncorrected hearing problems, and severe agitation
Outcome Measures For the person with dementia Mood (Cornell, RAID) Quality of life (QOL-AD) Autobiographical memory For the care-giver Mood - GHQ Care-giving stress (Relative s s Stress Scale) Positive aspects of care-giving For both Communication and quality of relationship between the carer and patient: semi-structured structured interviews videos of: non-verbal task eg jigsaw puzzle; & verbal task eg planning family meal
Preliminary results 65 entered trial, 51 completed Mean MMSE score 19.3 (sd 5.0) Mean age person with dementia 77.4, carer 68.9 RYCT participants show less negative change than control participants across most measures Significant differences on autobiographical memory interview and carer depression (GHQ- D), favour RYCT v. control Differences between RYCT and reminiscence alone are small (respite effect!)
Autobiographical Memory Interview (Autobiographical incident scale) (Post-treatment treatment p=0.007; follow-up, p=0.26) 16 14 12 10 8 6 Control 4 2 0 Baseline Posttreatment 3 month follow-up Joint reminiscence
Carer depression (GHQ-D) (Post-treatment, treatment, p=0.013; Follow-up, p=0.024) 3.5 3 2.5 2 1.5 1 0.5 0 Baseline 3 month follow-up Control Joint Reminiscence
RYCT evaluation next steps REMCARE National Institute of Health Research HTA Programme have funded 8-centre 8 pragmatic RCT of joint reminiscence groups v treatment as usual; Dec. 07 May 11 12 weekly sessions followed by 7 monthly maintenance sessions Recruitment target 508 people with dementia / carer dyads 350 recruited to date Assessments baseline, 3 months and 10 months, blind to treatment allocation Primary outcomes: Person with dementia quality of life Care-giver psychological distress Cost-effectiveness study
Battlers and Warriors We are the broken and damaged, but with the help of the great fraternity, the fraternity of the warriors of the blue elephant and the battlers from Llandygai We may not fly like eagles but we will keep our dignity. When the great Amen has sounded, we will have kept our dignity When the knell has sounded, we will have kept our dignity. John Barclay. October 18 th 2005
Acknowledgements MRC Trial Platform team Bangor: Ian Russell, Kate Jones, Joan Woods Bradford: Errollyn Bruce, Hazel May London: Martin Orrell, Rebecca Pons Project Consultant: Pam Schweitzer REMCARE Additional PIs: John Keady, Manchester Esme Moniz Cook, Hull Janice Rees, Newport Rhiannon Tudor Edwards health economist, Bangor