1. Life Story Work with People with Dementia
Margaret Gordon

2. 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

3. 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

4. Different formats of Life Stories
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

6. “This is Me” (Alzheimer’s Society booklet)

7. What is Life Story work?
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

8. 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

9. 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

10. 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

11. 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)

12. “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.)

13. 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)

14. 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)

15. 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”

16. Learning about a person’s past helps our understanding or interpretation of present behaviour.
“A person with dementia will behave in a way that is appropriate in the light of how they interpret what is happening around and to them. This is the world we need to enter.” Graham Stokes, 2010
”The best vantage point for understanding behaviour is from the internal reference of the individual himself” Carl Rogers, 1951

17. 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.)

18. This knowledge aids ideas for LSW Themes or “fishing pools” (J
This knowledge aids ideas for LSW Themes or “fishing pools” (J. Birren, 2001)
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
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

19. Be aware of all of the senses triggering memories
Be aware of all of the senses triggering memories. Can make use of this in LSW
Sight
Smell
Sound
Touch
Taste
Environment

20. The Skills needed for LSW
The process is more important than the product . (F. Gibson, 2004)
Active listening
Sensitive, probing ?’s
Paraphrasing
Reflecting feelings
Recapping
Recording as service user wishes

21. 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.

22. Where no family ---Ideas of materials for LSW
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 .

23. 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)

24. 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.

25. 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 long-buried memories Mostly distorted , but believe or suspend judgement

26. That family secrets may be revealed
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.

27. The four greatest risks for older people with dementia are
Social isolation
Boredom
Being disregarded as an adult person
Feeling that they are useless

28. 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!

29. 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 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.

30. 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.

31. 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

32. NICE/SCIE Dementia Guidelines 42, 2006
NICE and SCIE advocate “individual biography” and reminiscence as a non-pharmacological intervention for behaviours which challenge us

33. 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

34. 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.”

35. 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

36. Life Story Work is done
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.

37. 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