Presentation on theme: "Life Story Work with People with Dementia"— Presentation transcript:
1Life Story Work with People with Dementia Margaret Gordon
2We Shall Explore What Life Story Work is Why Life Story Work (LSW) is relevant and essential in dementia careThe benefits and risks in undertaking itResearch which supports itSome practical tips for undertaking it
3Life 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 themselvesA loose rather than precise term, which draws information from a variety of sources and can result in various formats
4Different formats of Life Stories Commercially produced Life History BookLoose leaf Life Story BookMemory BoxAudio or Video recordingsAnnotated Photo albumsAugmented Family TreeIllustrated Life LineStory Board/CollageMusical Biography
7What is Life Story work?Who the person is and to whom she is connectedWhere the person originated for and where they livedWhat the person has done at different timesWhat has been important to them and still is.What they would like people to know about themWhat values have been important to them and may still be importantWhat the person makes of his life experience and may want his children, grandchildren or family to appreciate
8So 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
9Why 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
10Why LSW? It draws on residual long term memory It provides a medium for communication that promotes self esteem and well-beingIt safeguards personal identityIt maintains links with familiar people which lessens encroaching isolationIt increases carers’ understanding of confused or agitated behaviourIt assists care-planning, person-centred and relationship centred care
11LSW, a valuable communication tool Dementia makes recall difficultRecognition is a more enduring feature of memoryA 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.)
13Why 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)
14Understanding 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)
15Understanding Behaviour Graham Stokes (2010) message is that people are not only unique but stay true to themselves in dementiaThe rock man“They were never close”The colour purplein “And Still the Music Plays; stories of people with dementia”
16Learning 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
17Features 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.)
18This knowledge aids ideas for LSW Themes or “fishing pools” (J This knowledge aids ideas for LSW Themes or “fishing pools” (J. Birren, 2001)Earliest memoriesChildhood and family lifeSchooldaysFavourite teachersImpact of teachersFirsts – pay/job/home/car/dateWorking lifeGoing out and having funWedding/sBabies and childrenPets lovedFood loved and madeCelebrations of the pastHolidays or days outHobbiesGames playedOrganisations supportedReligious or spiritual lifeTravel enjoyedSports played of hated
19Be aware of all of the senses triggering memories Be aware of all of the senses triggering memories. Can make use of this in LSWSightSmellSoundTouchTasteEnvironment
20The Skills needed for LSW The process is more important than the product . (F. Gibson, 2004)Active listeningSensitive, probing ?’sParaphrasingReflecting feelingsRecappingRecording as service user wishes
21Family 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.
22Where no family ---Ideas of materials for LSW Computer images of e.g. working life, hobbies.Letters/stories from friends or visitorsPhotos or recipes of favourite foodPostcards of places lived or loved or visitedMagazine cut-outs of places once visited/lovedCurrent photos of family home, town, pub, animals similar to that once owned.Tourism fliers of areas known to be significantVisiting the important place, pub, street, school, park .
23The 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)
24The 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.
25The 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
26That family secrets may be revealed Other risksThat family secrets may be revealedBut, --- 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.
27The four greatest risks for older people with dementia are Social isolationBoredomBeing disregarded as an adult personFeeling that they are useless
28The Benefits of LSWIt 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 identityIt recalls people skills and strengthsIt identifies past interests, likes and dislikes which aid person-centred planningIt is cheap but not costless ,and it is low riskIt builds understanding and friendshipsThe person’s wellbeing will be improved and so will yours!
29Researched benefitsA 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.
30Results Statistically significant results obtained on 4 measures Cognition – Mini Mental State ExaminationDepression – Cornell Scale for DepressionMood – Alzheimer’s Mood ScaleCommunication – Communication Observation ScaleChange in right direction obtained onIndependence – Functional Independence ScaleBehaviour _ Memory and Behaviour Checklist.
31The 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
32NICE/SCIE Dementia Guidelines 42, 2006 NICE and SCIE advocate “individual biography” and reminiscence as a non-pharmacological intervention for behaviours which challenge us
33Practical 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
34Practical 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.”
35Practical 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
36Life Story Work is doneTo improve the life of a person with dementiaIt will enrich yoursIt enlarges our capacity to feel (Gibson,2004)It is a valuable tool for communication and understandingIt becomes a passport when transition to hospital or another home is necessaryIt is a legacy for family and friends.
37ReferencesBirren, J. & Cochrane, K. (2001)“Telling the stories through Guided Autobiography Groups” The John Hopkins University PressGibson, F. (2004)“ The Past in the Present” Health Professionals PressMilwain, E. Journal of Dementia Care (2010)Kitwood, T “Dementia Reconsidered: the person comes first.” Buckingham: Open University PressKunz, J and Soltys, F.(2007) “Transformational Reminiscence.. Life Story Work” Springer Publishing Co.Naes, L. in “Reminiscence in Dementia Care.” (1998) Age ExchangeStokes, G. (2010) second edit. “and Still the Music Plays. Stories of People with Dementia.” Hawker Pubs. London