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Portrait of a Life – a multi-media toolkit for life story work.

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1 Portrait of a Life – a multi-media toolkit for life story work

2 The toolkit and what are we trying to achieve.. A multi-media toolkit for training and supporting the development of life story work Primarily indicated for use in care homes but developed for wider use with MHF support Supporting the knowledge and evidence base of staff utilising the toolkit Promoting positive engagement with individuals and family carers Something practical containing two DVD’s, a CD Rom, a written guide and photocopiable resources Menu of options for life story work An accessible resource meeting a range of learning styles and settings

3 Toolkit contents Acknowledgements Foreword Introduction The Importance of and the rationale for Life Story work The Evidence base The Benefits and the Risks Consent and Ethics A Practical approach to developing life stories ‘Going Home’ – learning and reflection Personal Stories Leo’s story Mary’s story Embracing and sustaining life story work in practice Final thoughts

4 What is a life story? Personal details Place of birth/upbringing Family history – parents, siblings, partner, children Family life – family network, close relationships Early years – school, special friendships, learning Working history – occupation, importance of work, retirement Religion/spirituality – practicing religion, spiritual needs/choices/values in life Marital status/relationship Wartime experience

5 Understanding Person Centred Care  V = Values the person with dementia  I = Treating people as Individuals  P = Perspective of the person with dementia  S = Supportive Social psychology (Brooker 2004)

6 Personhood  The outcome of person centred care  “A standing or status that is bestowed upon one human being, by others, in the context of relationship or social being. It implies RECOGNITION, RESPECT and TRUST ”. (Kitwood 1997)  Signs of well-being indicate this is being achieved

7 Maintaining Personhood  Positive Person Work  Supportive Social Psychology  Inclusion- Being a part of the social world  Attachment-To others, particularly in times of change  Comfort- Provision of warmth and closeness  Occupation- Being involved in the process of life  Love- The central need  Identity- Having a sense of who you are

8 “As we become more emotional and less cognitive, it’s the way you talk to us, not what you say, that we will remember. We know the feeling, but don’t know the plot. Your smile, your laugh and your touch are what we will connect with. Empathy heals. Just love us as we are. We’re still here, in emotion and spirit, if only you could find us.” “Dancing with dementia: My story of living positively with dementia” (Christine Bryden, Dancing with Dementia, 2005 p138)

9 Why do life story work?  To maintain personhood  To improve understanding of behaviour and presentation  To improve relationships with family carers  To provide quality of life for individuals  Transforming care planning  Increasing engagement and job satisfaction  Meets the Dignity in Care challenge- Respect

10 DVD AND GROUP EXERCISES What do you think are the main issues/concerns for Stan? What could staff in the home have done to improve Stan’s experience? What are the benefits of undertaking life story work? What information do staff need to gather to complete a life story for Stan?

11 STAN:- Lack of meaningful occupation No personal touches in terms of his environment The corridors all look the same-no landmarks/signposts to aid orientation Little/poor staff interaction Poor engagement in daily routines of the home Groundhog day-all the days are the same Hobbies/interests not known or acted upon by staff Lack of opportunities to maintain his sense of identity STAFF:- Engage with Stan to find out as much about him as possible Collaborate with family and friends to learn even more Make time to build in opportunities for engaging in hobbies and interests Plan his daily routines to take into account the things he likes and still can do for himself Ensure the environment around him reflects him as an individual to maintain his sense of identity Create a space for him to engage in work like tasks

12 Benefits  Achieves a holistic and comprehensive understanding of the individual as a person rather than through the biological processes of dementia.  Reduction in challenging behaviour through individualised care planning  Promoting positive therapeutic interventions  Positive engagement 1 – 1 and with services  Reduced re-referrals / reduced complaints

13 What individuals say… You have given me back my life…. Are you really interested in me? I want to cry. Can I cry? The poem reminds me of school.. Thank you! No-one has done anything like that for me before Memories are lovely things as long as you don’t get the bad ones Can’t tell you what your input has meant to her and us… The carers are always asking me about my life now

14 Risks  Proceed with caution!  Communicating the worth of the person as being in the domain of past competencies and achievements rather than in the present (Killick and Allan 2001)  The impact of negative life histories – a recommended area for further research

15 Evidence Base No official research Life story work helps staff form a better understanding of a person Recent policies DO support life history work

16 The Evidence Base…  Carers as experts model (Nolan & Keady 2001)  Support carers through sharing knowledge (Charlesworth 2001)  Family health nursing (WHO 1999)  National Service Framework for older people (DoH 2001)  The Essence of Care (DoH 2001)  The Dignity campaign (DoH 2006)  Kitwood T (1997) Dementia Reconsidered; The person comes first. University Press. Buckingham  Brooker D (2007) Person-Centred dementia care; making services better. Jessica Kingleys Publishers. London  Home From Home (2007) The Alzheimer's Society  CSCI (2007) See me not the dementia

17 Things to consider… Consent from the outset Ongoing Informed consent Confidentiality Defamation Act 1952 & 1996 Supervision and support for staff

18 Practical Models and Approaches  CARER model  Life Books  Memory Boxes  Life Story Boards  Special Interest/Hobbies Books  Significant Events Music CD

19 Practical Approaches Life books !

20 Memory boxes!

21 Life Story boards

22 The CARER model C : Collaboration A : Assessment with R : Relatives of E : Elderly R : Residents A model for working in partnership with individuals and family carers to promote person-centred care

23 Life story journals The CARER Model Life Books, Life Story boards and Memory Boxes Creating Life Story Boards and Memory Boxes Lynda Holroyd Ruth Endicott

24 Exercise 1 Think about an object you currently have in your possession, that is meaningful to you If you are happy to, place it on the table in front of you What significance does this have for you as a person How does this represent you as a person? How would you feel if these were taken away?

25 Exercise 2 – “No ideas?” Choose an object from the table Why have you chosen this object? Consider using objects to stimulate discussion.

26 Getting started Introductions Discuss life story work & consent form Developing a rapport Build trust and confidence Familiar face/voice Giving people time Showing empathy Showing a genuine interest Give some of yourself

27 The Process Using CARER model to gather information from individual/ families/partners in care. Spend time with the individual & consider the environment. Is a quiet area more appropriate for discussion? Use information gathered as a baseline for stimulating discussion with the individual. E.g. Tell me about your school days? Where did you go to school? Did you wear a uniform? Can you remember any special friends? - See CARER model info leaflet. Make notes without detracting from flow of conversation. Or, tape recorder with permission! Be aware of individual’s body language during discussion – happy? sad? excited? Open/closed posture? eye-contact?

28 The Process cont... Share their enthusiasm. Be sensitive to emotional memories and offer support. Is the information factual/confabulation? – Is this important? Be willing to share your own memories. Be aware of the time you are spending – too much? too little? Ensure you have support networks yourself. Life story work can evoke memories for you too

29 Potential Barriers Dysphasia Repetitiveness Reduced concentration Sensory impairments Others perceptions “they won’t remember!” Task orientated environment “I don’t have time? It’s not my job!”

30 Overcoming barriers Communication aids Body language/facial expressions Short sessions/don’t overload with info. Using sensory objects to touch/smell/hear They may not remember the content but may remember the enjoyment/feeling Person Centred Care is everybody’s business! A 5 minute conversation can make a difference! Role modelling

31 What do I do with the information? Decide on a theme or significant memory Research information relating to the theme or significant memory. Work with families/friends/partners in care for information Gather relevant media Consider confidentiality

32 Researching information Internet – clip art/Wikipedia – free to use. Be aware of copyright laws when using internet. Library Books Charity/second hand shops Using individual’s photographs/personal memorabilia – colour copy/scan. Originals are precious!

33 Themes for storyboards/boxes Holidays Pets Schooldays Washdays Working life Down the pit Make do and mend Motorbikes/cars Music memories Hobbies Fashion Favourite colours Through the years Childhood days Dancing Gardening Landmarks Sweetshop past

34 Suggested materials Newspaper cuttings Copied photographs Wrapping paper Scraps of material Familiar pictures Coloured card Glitter Anything pertaining to the theme of the box Plastic wallets Display booklet Glue sticks Scissors Imagination/fun Picture frame( can be recycled) Shoebox or similar vessel

35 Practical session Using your photographs and the provided materials, begin to assemble your memory box or board.

36 Related activities Craft work Poetry books Concentrate on facilitating hobbies Colouring/drawing Painting Using music tapes Talking books Reminiscence sessions Picture books

37 Confidentiality and keeping data secure Written permission via ‘consent form’ On going ‘informed’ consent Use of photographs Data storage Encryption

38 Dear Sir, I am writing this on behalf of my mother in law to try and outline some of her problems with my father in law, Leo. For the past 12 months it has been very difficult for my mother in law. Because of Dad’s changing behaviour he now has no interests at all and just wants to be with her all the time. He is confused regarding clothing, like not remembering to put shirts on etc or not taking them off and also wearing them under his night clothes. It is also difficult because he wears two hearing aids but has very selective hearing. He will totally ignore you and then repeat things to mum when we have gone. He is also moving and losing things. He cannot relax and he is up and down all the time and in and out looking for glasses, hearing aids, teeth, etc, but are usually either wearing them or have put them away and forgot where. We realise a lot of this is age related but it is making mum ill. When they are on their own, dad can be verbally aggressive to mum saying that she is always on the phone (mostly when we ring to see if she is alright), and that she does not do things for him, etc. He snaps at her and then five minutes later has forgotten it. Mum used to have two shopping days a week which gave her a break, but now dad insists on going with her. Sometimes he will be fine, but other times he can be very moody and takes it out on her when they get home. He is very confused as to days and times, etc. Recently mum had been quite ill with the stress and had to go into hospital, but he told people that she had gone to the hairdressers or shopping. He has his own keys for the house and was left to go for a walk once when mum had a hospital appointment. When we got back dad “hit the roof” and said we had locked him in the house. Another time dad shouted and carried on and he said mum had been out playing games and dancing until 4am when she had not been out at all. I hope this gives you a little insight of what is going on, and as you can imagine there is a lot more. On the whole dad is a lovely man and means no harm, but it is causing mum to be ill and upset because dad does not know he is doing it. We feel it is mum that needs the breaks. Dad worked until he was 82 in a little cleaning job or washing up for three or four hours a day and he loved it because it was his independence and got out of the house. Now I feel not only is it his age, but boredom too. But as much as we try to give him his independence he relies on mum for everything from dressing to food. He will not make a decision about anything and then says he was not asked. He is very jealous of anyone going to the house, including us, grandchildren and great grandchildren, as we are taking up mum’s time. he does not think we are family and calls us sir or madam, or friends. I do hope this helps you and that you can help us. I am sorry but my mother in law is not up to coming to this appointment with dad as she finds it all too much and very upsetting. There is not many days go by where she is not in tears and it is taking its toll on her health. Yours Sincerely, Another time dad shouted and carried on and he said mum had been out playing games and dancing until 4am when she had not been out at all. Recently mum had been quite ill with the stress and had to go into hospital, but he told people that she had gone to the hairdressers or shopping. He has his own keys for the house and was left to go for a walk once when mum had a hospital appointment. When we got back dad “hit the roof” and said we had locked him in the house. When they are on their own, Dad can be verbally aggressive to Mum.



41 Developing the story. The flowchart Basic interviewing Hopefully, by undertaking a Life Story Project, you can help the person build self confidence and feel valued and respected. It is also important when engaging with the person to ask relevant questions Basic Interviewing techniques Ask open-ended questions which can be developed at length by the client. It is essential that the interviewer be as unobtrusive and inconspicuous as possible. Start the session with easy and enjoyable kinds of questions…

42 As we go through life we build up a personal history with its unique mix of joys and pleasures, sorrows and pains. Our sense of who we are is linked to that history and if we lose that we lose something of ourselves Tom Kitwood. Thank you !

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