Evaluating reminiscence work
Bob Woods
Bangor University
Wales, UK
[email protected]
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 - evidencebased practice
Can psychosocial approaches be subjected to same form
of evaluation as we require of new drugs?
They are not so easy to ‘package
package’’
Can rarely be ‘double blind’
blind’
A ‘placebo
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. NICEEvidence
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)
be
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
Reminiscence
Ward
30
20
10
0
Hospital 1 Hospital 2
Day
hospital
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 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 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
Life Review (8)
Control (9)
4
3
2
1
0
Pre-test
Post-test
6 week FU
Life review to assist adaptation to residential
care RCT - Personal autobiographical memory
scores
40
35
30
25
Life Review (8)
Control (9)
20
15
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 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
got something beginning with ‘D’, and
that’s why I’m here”
Didn’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 really proud of me and what I’ve
done with my life. I’ll 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 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
treatment
sessions
Absence of severe physical health problems, severe uncorrected
hearing problems, and severe agitation
Outcome Measures
For the person with dementia
For the care-giver
Mood (Cornell, RAID)
Quality of life (QOL-AD)
Autobiographical memory
Mood - GHQ
Care-giving stress (Relative’s Stress Scale)
Positive aspects of care-giving
For both
Communication and quality of relationship between
the carer and patient:
semi-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 (GHQD), favour RYCT v. control
Differences between RYCT and reminiscence
alone are small (respite effect!)
Autobiographical Memory Interview
(Autobiographical incident scale)
(Post-treatment p=0.007; follow-up, p=0.26)
16
14
12
10
8
Control
6
4
Joint
reminiscence
2
0
Baseline
Post3 month
treatment follow-up
Carer depression (GHQ-D)
(Post-treatment, p=0.013; Follow-up, p=0.024)
3.5
3
2.5
2
Control
1.5
1
Joint
Reminiscence
0.5
0
Baseline
3 month
follow-up
RYCT evaluation – next steps
REMCARE
National Institute of Health Research HTA Programme
have funded 8-centre 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
Care
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 18th 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