Life Story Work with People
with Dementia
Margaret Gordon
We Shall Explore
• What Life Story Work is
• Why Life Story Work (LSW) is relevant and
essential in dementia care
• The benefits and risks in undertaking it
• Research which supports it
• Some practical tips for undertaking it
Life Story Work
• Originates from adoption and foster care work
• Involves the intentional or planned efforts to
encourage people with or without dementia to
think about, remember, share and record
information about themselves
• A loose rather than precise term, which draws
information from a variety of sources and can
result in various formats
Different formats of Life Stories
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Commercially produced Life History Book
Loose leaf Life Story Book
Memory Box
Audio or Video recordings
Annotated Photo albums
Augmented Family Tree
Illustrated Life Line
Story Board/Collage
Musical Biography
“This is Me” (Alzheimer’s Society booklet)
What is Life Story work?
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Who the person is and to whom she is connected
Where the person originated for and where they lived
What the person has done at different times
What has been important to them and still is.
What they would like people to know about them
What values have been important to them and may
still be important
• What the person makes of his life experience and may
want his children, grandchildren or family to
appreciate
So Life Story work--• Epitomises person-centred and relationship centred
care. It enables us to realise quality care, tailored to
meet individual need.
“It is in the fine grain of care that quality care is really
experienced, the tiny details that show that our
uniqueness has been recognised.” Prof. Mary Marshall in
preface to “Living Fuller Lives” (Bamford Review,2007)
“High quality care is synonymous with respecting
individuality” Faith Gibson, 2004:55
Why LSW with People with
Dementia ?
Bill Mearns (2007) said
that Life Story Work
with people with
dementia is “as
critically important as
lotions and potions.”
Why?
Several reasons
Why LSW?
• It draws on residual long term memory
• It provides a medium for communication that
promotes self esteem and well-being
• It safeguards personal identity
• It maintains links with familiar people which lessens
encroaching isolation
• It increases carers’ understanding of confused or
agitated behaviour
• It assists care-planning, person-centred and
relationship centred care
LSW, a valuable communication tool
• Dementia makes recall
difficult
• Recognition is a more
enduring feature of
memory
• A person is more able to
recognise past events
than actively recall them
(Lise Naes , 1998:120)
“As we go through life we build up a personal
history with its unique mixture of joys and
pleasures, sadness and pain. Our sense of who
we are is linked to that history and if we lose
that history, we lose something of ourselves.
For a person with dementia who is losing their
memory and trying most of the time to make
sense of who they are, a life story book can
be an atlas, the compass, the guide to
finding their self.” (Tom Kitwood,1992.)
Why LSW?
“Gaining better knowledge
and understanding of
the factors influencing
behaviours and
emotions transforms
attitudes and fosters
greater sensitivity,
thoughtfulness and
empathy towards the
individual” (B.Pointon, in
G.Stokes, 2010)
Understanding through LSW
• People with A.D. have lost their ability to lay
down new memory for faces and places and
use their old memory to interpret the
environment.
“What we see is strongly influenced by the
concepts we access from our memory archives
from the temporal lobe and “map” onto the
visual perceptions in the occipital lobe”
(E. Milwain, 2010)
Understanding Behaviour
Graham Stokes (2010) message is that people
are not only unique but stay true to themselves
in dementia
• The rock man
• “They were never close”
• The colour purple
in “And Still the Music Plays; stories of people
with dementia”
Learning about a person’s past helps our
understanding or interpretation of present
behaviour.
“A person with dementia
will behave in a way
”The best vantage point
that is appropriate in the
for understanding
light of how they
behaviour is from the
interpret what is
internal reference of the
happening around and
individual himself”
to them. This is the
Carl Rogers, 1951
world we need to enter.”
Graham Stokes, 2010
Features of memory loss through
dementia
• Memories of childhood and early adulthood are very
strong. New memories are integrated into these.
• Emotion boosts the release of additional
neurotransmitters into the temporal lobe to
consolidate memory, so emotional memories are
stronger than neutral memories.
• Repeated experiences last (though the context is
forgotten)
• But certain experiences of strong emotional content
that are not repeated we carry (e.g. wedding day,
births of children, first car.)
This knowledge aids ideas for LSW Themes
or “fishing pools” (J. Birren, 2001)
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Earliest memories
Childhood and family life
Schooldays
Favourite teachers
Impact of teachers
Firsts –
pay/job/home/car/date
Working life
Going out and having fun
Wedding/s
Babies and children
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Pets loved
Food loved and made
Celebrations of the past
Holidays or days out
Hobbies
Games played
Organisations supported
Religious or spiritual life
Travel enjoyed
Sports played of hated
Be aware of all of the senses triggering
memories. Can make use of this in LSW
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Sight
Smell
Sound
Touch
Taste
Environment
The Skills needed for LSW
The process is more
important than the
product . (F. Gibson,
2004)
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Active listening
Sensitive, probing ?’s
Paraphrasing
Reflecting feelings
Recapping
Recording as service
user wishes
Family Carers
• Involve family carers if at all possible
• They need to understand the benefits of the
work before LSW starts. (This is not a test of
memory.)
• Family carers can tell the stories behind the
photos or memorabilia which people will
recognise, but may not recall.
• Do not accept any materials for the LSW
without explanation or annotation.
Where no family ---Ideas of materials for
LSW
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Computer images of e.g. working life, hobbies.
Letters/stories from friends or visitors
Photos or recipes of favourite food
Postcards of places lived or loved or visited
Magazine cut-outs of places once visited/loved
Current photos of family home, town, pub, animals
similar to that once owned.
• Tourism fliers of areas known to be significant
• Visiting the important place, pub, street, school, park .
The risks in LSW?
That painful memories will be recalled
But
“Remembering and sharing painful life experiences
promotes greater emotional healing and acceptance of
unfortunate circumstances.”
Moreover
“Remembering the way difficult times were faced in the
past helps people face difficult times today”
(Kunz, J and Soltys,F. 2007:41)
The risks?
Abuse disclosed
• Then must be dealt with
in accordance with the
procedures for
Safeguarding
Vulnerable Adults.
• Duty to report to line
manager.
• Protection supersedes
confidentiality.
The risk of the re-emergence of past trauma
Memories of past trauma
can re-emerge
sometimes for the first
time under the impact of
dementia.
Old psychic defences have
given way to longburied memories
Mostly distorted , but
believe or suspend
judgement
Other risks
That family secrets may be revealed
But, --- structured approaches may be needed
to promote quality of life.
The need to put one’s life into perspective becomes an
increasingly important task as one ages (Butler,
Webster, Gibson, Haight, Schweitzer, Kunz and Soltys) but
older people have fewer and fewer contacts to
reminisce with as significant people die, become
disabled or move into care.
The four greatest risks for older people with
dementia are
• Social isolation
• Boredom
• Being disregarded as an
adult person
• Feeling that they are
useless
The Benefits of LSW
• It is an enjoyable activity for the person, staff and
family. It will create a legacy for the family.
• It enhances self worth and a unique identity
• It recalls people skills and strengths
• It identifies past interests, likes and dislikes which aid
person-centred planning
• It is cheap but not costless ,and it is low risk
• It builds understanding and friendships
• The person’s wellbeing will be improved and so will
yours!
Researched benefits
• A controlled pilot pre-test post -test study by
Haight and Gibson(2004) undertaken in 6
facilities in N.I with 30 residents aged 60-90
with a diagnosis and pre-test MMSE score of
17.
• Randomly selected and 6 weekly structured
sessions of life story work.
• Control group continued to receive ordinary
care.
Results
Statistically significant results obtained on 4 measures
• Cognition – Mini Mental State Examination
• Depression – Cornell Scale for Depression
• Mood – Alzheimer’s Mood Scale
• Communication – Communication Observation
Scale
Change in right direction obtained on
• Independence – Functional Independence Scale
• Behaviour _ Memory and Behaviour Checklist.
The Northern Health and Social Care Trust
Project with RNNI
• Yvonne Carson Senior Health Promotion
Officer working with the RNNI. 4 half day
sessions to train and encourage staff. Northern
Trust Life Story Book template created.
• No dispute about its usefulness for residents
and staff but immense problems in staff getting
time to implement.
• Has led to Big Lottery funding for further
LSW
NICE/SCIE Dementia Guidelines 42, 2006
NICE and SCIE
advocate
“individual biography”
and reminiscence as a non-pharmacological
intervention for behaviours which challenge
us
Practical tips
• Informed consent or assent is essential
• Dedicate time in private, being sensitive to mood,
health, energy levels. Use the LSW information often.
• Include only what the person WANTS to include .
This is not an autobiography.
• Be inquisitive – pick up information from old
newspapers (e.g.50 years ago sections in local
newspapers), or from libraries, visitors etc.
• Use multi-sensory triggers to aid recall .
• Keep it simple and a natural part of your caring role
.Have LSW on job descriptions and supervision
agendas
Practical Tips (continued)
• A loose leaf folder is easier to compile, -photo or
article on one side , text on other.
• Copy everything donated by family.
• Use the first person tense and words of the person
with dementia. If using computer, encourage person
to chose font size and type. Check you are using their
preferred verb or adjective.
• Use evaluative words as guided by the person.eg.
“My cheeky dog Barney””My lovely mum” “My
beautiful wife”.”My horrible/great school.”
Practical tips
• Provide empathetic
listening to sad stories
• Respect information that
the person does not
want included. He may
have benefitted from
talking about it.
• Encourage reflections
on life and past
achievements
Life Story Work is done
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To improve the life of a person with dementia
It will enrich yours
It enlarges our capacity to feel (Gibson,2004)
It is a valuable tool for communication and
understanding
• It becomes a passport when transition to
hospital or another home is necessary
• It is a legacy for family and friends.
References
• Birren, J. & Cochrane, K. (2001)“Telling the stories through
Guided Autobiography Groups” The John Hopkins University
Press
• Gibson, F. (2004)“ The Past in the Present” Health
Professionals Press
• Milwain, E. Journal of Dementia Care (2010)
• Kitwood, T “Dementia Reconsidered: the person comes first.”
Buckingham: Open University Press
• Kunz, J and Soltys, F.(2007) “Transformational
Reminiscence.. Life Story Work” Springer Publishing Co.
• Naes, L. in “Reminiscence in Dementia Care.” (1998) Age
Exchange
• Stokes, G. (2010) second edit. “and Still the Music Plays.
Stories of People with Dementia.” Hawker Pubs. London