RESOURCE PACKTold in South Yorkshire -Life Story Work & People with Dementia

CONTENTS

1. INTRODUCTION TO THE PACK

2. BACKGROUND TO LIFE STORY WORK

3. QUALITIES NEEDED BY THE PERSON GATHERING THE LIFE STORY

4. HOW TO GET STARTED

5. CONSIDERATIONS

6. IDEAS ON WHAT TO INCLUDE

7. EXAMPLES OF LIFE STORY WORK

8. RESOURCES

9. FAQs

INTRODUCTION TO THE PACK

This pack has been developedby the Told in South Yorkshire -Life Story Work and Peoplewith Dementia Advisory Group.

This group was formed in 2011 andcomprises people with dementia, familycarers, health and social care staff andUniversity lecturers. Members of the groupinvolved in the pack include: LynseyButton; Brian Fairest; Sandra Galloway;Claire Jepson; Jane McKeown; KathRimmer; Tony Ryan; Michelle Wattam.

A piece of art work was created by peopleliving with Dementia from Grenoside GrangeHospital and Darnall Dementia Group; thishas become the logo for the Advisory Group.

The idea for the pack emerged because:

• Although many people are enthusiastic about using Life Story Work, it can be difficult to get started

• People with dementia, family carers and health and social care staff who attended workshops on using Life Story Work requested some information

•We wish to bring together our knowledge, experiences and resources into one place that might be shared by others

The content of the pack was based on thefindings from 8 focus groups and fromconversations with people with dementia,family carers and care staff asking whattheir information needs were.

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BACKGROUND TO LIFE STORY WORK

The use of Life Story Work wasfirst described in the 1980s withchildren who were adopted or in care. It was used as a way ofhelping the child to confirmtheir identity and roots.

In the 1990s the use of Life Story Work was detailed with: people with learningdisabilities; older people in care homes;older people in general hospitals andpeople with dementia. Since that time it has also been used with people with mentalhealth needs and people receiving end oflife care.

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We describe the use of Life Story Workwith people with dementia as:

• A way of communicating with a person (and their family carers) about their life

• Finding out what was important to the person in terms of their memories, experiences, life events, values and beliefs

• Recording that information in a way that is negotiated with the person (and their family carers)

• Using that information with the person in everyday communication and care activities

• An on-going process of discovery

The benefits of Life Story Work mayinclude:

For the person living with dementia

• It can help them to feel proud of their life

• Make them feel listened to and valued

• Help them to feel that they are contributing

• Assist in triggering memories

• Can give the person a ‘voice’

“I was noticing her expressions ‘Oh yes itwas me’ when other people comment ‘Ohwas you a school teacher’ and ‘I didn’t knowyou ran a pub’ and ‘Yes it’s me’ and likeshuffling her clothes to…very proud of whatshe did do.” OT assistant about a womanlooking at her life story book.

For family carers

• Can help them to feel like they are doing something helpful

• Can help them to remember the person in the context of their whole life and not just since they had dementia

• Can help them to feel proud of their relative and their achievements

“It was nice to recapture some of thosememories … the fact that he is still theperson that you married he looks slightlydifferent, he may act differently but it’s stillthe person that you married so I think Ineeded that little jolt back as well.”Wifeabout her experience of Life Story Workwith her husband.

For care staff

• It is enjoyable to work with a person with dementia (and their family carers) in this way

• It can help staff to appreciate the person with dementia in the context of their whole life

• It can help make connections between staff and the person with dementia

• It can help staff to understand the person better

• It can help to challenge negative views and assumptions about the person

“I don’t think I quite knew the depth of hercharacter, when you listen to her life storyit’s been very troubled and traumatic attimes and yet she’s come out very balancedand non judgemental and I think it’s justmade me inspired really by how she’shandled things.” Nurse manager about awoman she undertook Life Story Work with.

QUALITIES NEEDED BYTHE PERSON GATHERINGTHE LIFE STORY

Life Story Work is not justabout gathering informationabout a person’s life. What isimportant is the way in whichthe life story information isgathered. The qualities of theperson gathering the LifeStory Work information areessential for the person withdementia to feel valued andcomfortable.

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These following qualities are important:

• Being open minded

• Not judging what the person says or judging their values and beliefs

• Having a genuine interest in what older people have to say

• Being inquisitive and curious about the livesof other people, without appearing nosey

• Awareness of own feelings, emotions and responses

• Being able to appreciate and tune in to the feelings of other people

• Respecting and valuing the person and their story

• Responding in a sensitive way to any emotions

• Being appreciative about what we can learn from the stories of older people

• An ability to listen and convey attention to the story teller

• Being able to reflect and learn from past experiences

Life Story Work is best gathered whenyou already know something about theperson with dementia and have startedto develop rapport with them; howeverLife Story Work can also help develop andstrengthen rapport with the person.

HOW TO GET STARTED

Getting started with Life Story Work can feel difficult,especially for the first time.

There can be an idea that there is a“right way of doing it” or it can feel like anoverwhelming prospect. This is summed upby a staff member starting out with LifeStory Work:

“Actually getting going is quite difficult … it’sone of those things you look at as quite a bigthing and where do I start? Who do I ask?Where do I go to find out this information?Once you get going it’s kind of easy and youfind your way and you find your paths.”

Our advice would be to ‘make a start’, ‘give ita try’ and ‘start small’ and hopefully this packwill guide you through the process.

This section is especially relevant to staffwho are considering using Life Story Workwith people with dementia.

A: Seeing if a person wants to participate inLife Story Work

Identify a person who you think may benefitfrom / enjoy Life Story Work

Talk to them about it and get an idea ofwhether they are interested or not. Noticetheir reactions, verbal and non-verbal. See ifthey seem to understand what is involved. Ask them if there are family members youcan also talk to in order to keep theminformed and also gather information from(be guided by the person’s wishes)

Consider a number of key questions to ask ofthe person and people who know them well:

• Has the person been someone happy to talk about their life to others?

• Are there any known distressing or unpleasant memories the person may prefer not to relive?

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• Do you think the person would like care staff to know more about their life to assist in their care?

• Is the person someone who is happy to share their views and opinions with others if given the opportunity?

Getting formal ’consent’ in awritten form is not alwaysnecessary or relevant as youneed to appreciate theperson may change theirmind at any point during theprocess. It is importantthough to note responsesand respect the person’swishes. Remember noteveryone enjoys reminiscing.

B: Gathering Life Story Workinformation

Some people find having alist of questions or topicareas can help to providesome structure to gatheringinformation. Examples ofthese can be found in theResources section. The mainadvice is to start with whatthe person wants to tell you,be led by them rather than alist of questions. If you dostart by using questions ortopic areas you should find asyour confidence increasesyou will rely on them less andless.

Aim to include the personwith dementia as much aspossible in telling their ownstory. Sometimes this can bedifficult and you may alsoneed to find other peopleand ways to find out about aperson’s life story.

The person living withdementia

Through everydayconversation rather thanusing list to ask questions.

To fill in more details or gapsin information obtained fromelsewhere.

To get the person’s ownversion of events.

Family / close friends

Check with the person withdementia that this is OK.

Ask what memories / stories/ information the relatives /close friend have.

Perhaps leave a checklistsuch as “This is Me” for familymembers to complete.

Ask about any photographs /documentation that mightadd to the information (offerthat these can be scanned,don’t use original photos inany book as they maybecome lost or damaged).

Other staff

If the person with dementia isunable to offer informationand/or has no family considerfinding out what informationother staff know about theperson. Maybe ask them tocomplete a checklist such as“This is Me”, or talk to inhandovers, on the phone, inteam meetings.

Care notes

Work through care notes andmedical notes.

Check accuracy ofinformation with person orfamily where possible.

C: Recording the life story

The benefits of recording theperson’s life story are:

• It can then be used with theperson as part of their care and interactions

• It provides a record and a prompt if the person with dementia forgets part of their life story

• It can be shared with other people so that they can get to know the person better

• If a person moves between care settings the record canaccompany them

The resource pack includessections on different ways torecord life stories and whatto include. What does needto be considered is how toinvolve the person withdementia and familymembers in how to bestrecord the life story andcheck they are happy withhow it is recorded (checkingcontent, typing errors etc).Make a record of who theperson with dementia ishappy to view their life storyrecord and if there is anyoneit should not be shared with.

Tips and hints for staff

• Appoint a person to co-ordinate the work

• Agree who is going to do what as individuals or in pairs

• Have a central place / box file to put photographs, stories / memories, snippetsof information picked up in conversation

• Agree on a date for when allinformation is to be gathered

• Set a meeting after all information is gathered to agree how this will be used. Involve the person with dementia and any family

CONSIDERATIONS

Life Story Work is generally a safeand enjoyable activity. It can helphowever to be aware of a fewconsiderations so that you areprepared for any issues that mayarise.

Public versus Private stories

Life Story Work is about helping a person torecount and celebrate the parts of their life thatthey choose to focus on. It is not about pryinginto people’s lives. However, very occasionallypeople might talk about private stories.

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It can be helpful to view the informationgathered in Life Story Work in terms of ananalogy of a chest of drawers, firstdescribed by Professor Dawn Brooker1.

Life Story Work should focus primarily on‘top drawer’ information. We find thatsometimes as relationships and trust buildthen people may speak about ‘middledrawer information’. ‘Bottom drawer’information is not invited in life story workbut occasionally is spoken about. If peoplewith dementia divulge ‘bottom drawer’information then this should not beincluded in any life story work record.

Who is the Life Story Work for?

Life Story Work should keep the personwith dementia at the centre of the process.There is no doubt there are great benefitsfor family and friends and for care staff,but the story belongs to the person withdementia primarily.

Family and friends will have their ownviews on what stories should be told andwhat photographs should go into a lifestory book. These are important opinionsbut make sure the person with dementiaremains in charge. It does not matter ifstories are not accurate, it is what theperson with dementia wants to tell. It maybe that family and friends want to maketheir own version of a life story book.

“She was very definite about what shewanted in and what she didn’t want in. Herdaughter had picked photographs that shehad thought Eileen would want and quite afew of them weren’t what Eileen wanted atall…. so she very much collaborated,participated in and took the lead … which Ithought was really nice, cos it wasn’t whatI was expecting.” Nurse manager workingwith Eileen and her daughter.

Even if the person with dementia appearsunable to contribute to their own story doeverything you can to keep them involved.Notice their facial expressions tophotographs, objects or accounts of theirlife. If you find out a snippet of informationcan you engage them in telling you moreabout it? Can they make choices on whatbook to choose, what to decorate theirmemory box with, can you work out whichobjects are their favourite, which texturesor smells they prefer?

Quality Checking

It is important that the final Life StoryWork record is of a good quality. Spellingsshould be checked and the quality shouldreflect the precious nature of the work.Having a final editing meeting with theperson with dementia and family or friendscan help.

1 Brooker, D. (2010) The VIPS model and the Importance of Life Story Work. Presentation to The First National Life Story Work Conference, 12th February, Leeds.

Top Drawer: Information we would behappy to share with most people wemeet, for example, names of familymembers, pets, where we grew up,what jobs we did, basic preferences,where we went on holiday.

Middle Drawer:Information wemay choose todisclose in thecontext of afriendship or caringrelationship andmay include:thoughts, feelings,beliefs, significantrelationships, morepersonal memories.

Bottom Drawer: Information that maybe private to a person or perhaps afew close others and not for the publicdomain and may include: familysecrets, private or traumatic memories.

EXAMPLES OF LIFE STORY WORK

Helping a person to record theirlife story in some way can havea number of benefits.

• It can be used with the person in communication and care

• It can be shared with other people that theperson is happy for it to be shared with

• It can accompany the person to new care environments, helping others to get to know the person more quickly

• It can record memories that might otherwise get forgotten

There are lots of different ways to recorda life story and it is important to offer theperson (and their family carers) theoptions and also think about how the lifestory will be used.

There is no right or wrong way and eachperson will want something different butit is worth spending time first thinking:

•Who will be using the life story record?

•Where will it be used and kept?

• Is the method you are thinking of using fit for the way it will be used?

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Case Study

Support worker Janicemade a beautifully intricateand delicate life story bookfor Cynthia. Cynthia andher family loved it and itprovided a wonderfultestimony to Cynthia’s lifeand a precious keepsake.However, staff were worriedabout using it with Cynthiaregularly in the nursinghome fearing it would getdamaged and it remainedlocked in the nursing office.A decision was made tomake a more robust versionthat could be used on adaily basis with Cynthia,and her family took care ofthe more delicate version.

Life Story Books

Life story books can takemany different forms butgenerally are a collection ofphotographs, text, maybeincluding certificates, maps,photos of mementos,stories…. here are someexamples…

Online Story Books

A number of companiesoffer the opportunity toupload photographs andwords to make a digitalstory book that is thenprinted and sent to thecustomer.

Memory Board

A cork board for examplewith photographs,mementos, images, wordsetc to reflect an aspect ofsomeone’s life. Or perhapsa deep photograph framewith a Perspex covering toprotect what is inside.

Digital Photograph Frame

Having a loop ofphotographs playing orperhaps just a couple ofsignificant photographsthat may be a talking pointand a trigger for memories.

Tablet Computer

To store and displayphotos, the advantagesbeing that you can zoom in on the detail ofphotographs that wouldotherwise remain small andmaybe hard to see. Thephotographs can be kepton individual memory sticksif used in a care setting.

A Memory Box

A box decorated in thingsrelevant to the person andcontaining mementos thattrigger memories. This mayalso include more sensoryobjects that might evokememories through touch orsmell.

Collage

A large photograph framemounted on a wall with acollection of photos andtext, or a mixture ofimages, words, colours andtextures created with paperor materials.

Sounds

A recording of sounds thatare significant to theperson and may evokememories. For examplescissors cutting throughfabric may be significant toa seamstress; the sound ofa lawnmower to a groundsman; the sound of seagullsmay evoke holidaymemories and stories.

Web Pages / Social Media

There are so manyopportunities to create lifestories through webpages,personal websites, socialmedia sites, blogs. Clearly itis important to check whoelse might be able to viewthese and review privacysettings.

A Film

This could be a film of theperson talking about theirlife, or might involve aselection of photographsand text perhaps set to afavourite piece of music.

Case Study

A group of older men fromthe Yemen living in the UKwere approached aboutLife Story Work. Most didnot have any photographsor mementos. A numberwere unable to read Englishor Arabic. A decision wasmade to film the mentalking about their lives andthis has resulted in verymoving and insightful filmthat provides anunderstanding of theirexperiences and lives.

TIP...People’s stories continueand it is good to leavespace to add to aperson’s life story withmore recent photographsand accounts.

IDEAS ON WHATTO INCLUDE

When recording a life storythere are lots of differentways that you might want to complement the storiesthat people tell. What isimportant is that you focuson what the person wants totell you. A life story does nothave to be a chronologicalaccount of a person’s life.

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Case Study

Brian did not want a complete account ofhis life – he wanted his life story book tostart at the point he met his wife as hesaid that was when his life really began.

For some people their life story may beone photograph with some words on itthat help trigger memories andconversations with the person; or it mightbe one significant object that the personcan see and touch that prompt a story.

Some examples of what you mightinclude:

• Episodes of life eg: work; being a mother/father; sports achievements; focus on a hobby; life since marriage; life after retirement; holidays

• Snippets of what the person wants to have recorded – no matter how small

• Important people

• Significant places

• Photographs (get them scanned rather than use originals)

• Maps

•Written accounts of a person’s memories

• Stories from others

• Certificates

• Photographs of mementos, artefacts personal to the person

•Objects of significance kept in a memory box

• Pictures from the internet relevant to the story

• Scanned cards or letters

Case Study

Gordon’s life story book included a handwritten story and drawings from Matthewhis Grandson about Granddad; how he wasa great gardener, drawings of things hegrew, memories of things they didtogether. It added a moving account toGordon’s life story book, something thateveryone who saw his book commentedupon. It also encouraged Matthew to lookat the book regularly with Gordon.

Case Study

Marion had very few photographs toinclude in a life story book. Marion’s sonDavid searched the internet and foundphotographs of the street which she grewup on and the church she was married in.These became a trigger for memories forMarion.

TIP...It can help to get small photographsenlarged so that the person can seethe detail, which may otherwise beoverlooked.

RESOURCES

Places and resources to consider

• Local library – particularly the local history section• Local museums and more specialist museums such as the Yorkshire Mining Museum• Yorkshire Film Archive• Books and magazines of local history and specialist interests• The internet generally for information, photographs and images (check any copyright)

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Case Study

David works in a care home and describeda resident Margaret, who was verywithdrawn and uncommunicative. One day he was looking through a book oflocal history with her when she pointedout a picture which had her Father andUncle in it. The memory triggered a longconversation. David took the book and got the picture enlarged and mounted andpresented Margaret with the photograph.She was delighted and other residentsshowed an interest in Margaret and herstories about the photograph. This gaveMargaret the confidence to begin comingto the dining room for meals andsocialising with staff and residents. It’samazing that such a chance sharing of a local history book lead to such adifference.

Equipment

Equipment will depend on the way theperson’s life story gets recorded but someexamples of resources / equipment youmay need access to include:

•Scanner to scan photographs (photo shops often have these)

•Printer – preferably colour

•Computer

•Photograph frames of different sizes

•Photo paper

•Card, coloured paper, embellishments for life story books, memory boxes – try places like Wilkinsons, Hobby Craft, The Range, The Works, John Lewis, WH Smiths

•Photograph albums, books

Possible Links and Resources to Life Story Work

Remember these will change so every so often use an internet search engine to check for new additions. We are notendorsing any of these site / links /resources; they are just ones we havefound that might give people ideas:

www.pricelesstreasuresonline.com

www.activitiestoshare.co.uk/p/125/life-story-books

www.dementiauk.org/information-support/life-story-work/

Websites around Life Story Work andStorytelling

www.toldinsouthyorkshire.co.uk

www.lifestorynetwork.org.uk

www.storyingsheffield.com

www.makingwaves.org/life-story/

FREQUENTLY ASKED QUESTIONS

Doesn’t Life Story Work also bring up upsettingmemories?

Life Story Work can be emotional for the personwith dementia, for family carers and for care staff.However feeling sad and emotional is a normalpart of life and should not discourage people fromusing Life Story Work as generally the benefitsoutweigh the concerns. So long as the peopleconcerned are given time to express their upsetthen it can be very helpful. Very occasionally LifeStory Work can evoke more upsetting or traumaticmemories, but in our experience this is quite rareand can often be minimised by finding out at thestart if there are aspects of a person’s life theywould prefer not to recount.

Is Life Story Worksomething everyone with dementia shouldtake part in?

No, it is a personal choice. Manypeople with dementia and theirfamily and friends find it reallyenjoyable and a good way torecord and recall memories.However not everyone enjoysreminiscing and it has to be up tothe individual to decide.

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Can people with more advanced dementia benefit from Life Story Work?

Yes, you just need to be more creative inhow you involve them and use Life StoryWork with them. We have many exampleswhere people with more advanceddementia seemed to respond to seeingphotographs, hearing noises or from touchor aromas. You need to believe that theperson can communicate and look forsubtle signs in their body language, facialexpressions and words. You might want toalso work closely with family and friendsto gather information. Sometimes a smallsnippet of information you know canevoke a response. Even if you don’t noticea response you can still talk to the personor engage in activities that you know wereimportant to them.

Does the information the person tells you have to be ‘true’?

We all edit our stories depending who we are talking to. What the person withdementia tells you is their truth and it isimportant to accept and value their reality.Sometimes this can be difficult for familyand friends who want the story to beaccurate in their eyes. It is important toremember that the story belongs to the person with dementia and try andnegotiate an understanding of that withfamily and friends.

Should everything the person tells meduring Life Story Work go into their lifestory record?

It is important to check with the personwhat they want to go into any life storyrecord and what they wish to remainprivate. Don’t underestimate the abilitiesof people with dementia in being able tobe involved in this decision. If however youhave concerns over their dignity or theconfidentiality or dignity of family andfriends then discuss with a trustedcolleague. Occasionally you may have todecide to edit a person’s story to protectthem or others. Use the ‘Chest of Drawers’analogy to help guide you.

What if the person changes their mind and wants the life story book destroying?

Sometimes people willingly share their lifestory and agree for this to be recorded.Very occasionally the person may thenchange their mind. It is important torespect the wishes of the person; after allit is their life story book. It is perhaps wiseto wait a while and bring up the subjectagain in case the person changes theirmind back, but if the person is insistentthen you have to respect their wishes anddestroy their book.

How can I inform other colleagues aboutusing Life Story Work?

Sometimes you might find that you workwith a person to gather and record theirlife story book, but colleagues and otherstaff may not use it with the person. It may be that you need to inform everyoneabout the work, show them the life storyrecord, explain the benefits, let them knowhow they can use Life Story Work with theperson when you are not there. Maybe youcould show them this pack, perhaps askyour manager for support. It can help ifthe use of Life Story Work gets writteninto the person’s care plan.

CONTACTJane McKeown 0114 226 3950 | jane.mckeown@shsc.nhs.ukTony Ryan 0114 222 2062 | t.ryan@sheffield.ac.ukLynsey Button at Darnall Dementia Group 07773 381621 | lynsey.button@shsc.nhs.uk Michelle Wattam 07977 012742 | michelle.wattam@nhs.net

CLAHRC forSouth Yorkshire

Darnall Dementia Group

This project was kindly supported by Sheffield Health and Social Care Charity, The Foundation of Nursing Studies and General Nursing Council for England and Wales Trustpractice based development and research programme award and the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Carefor South Yorkshire (NIHR CLAHRC SY).

This resource pack presents independent research by the NIHR CLAHRC SY. The views and opinions expressed are those of the authors, and not necessarily those of the NHS,the NIHR or the Department of Health.