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A Guide to Creating a Life Story for Care-giving1What are Life Story books?Life Story books are tools that gather specific personalinformation about past life stories, important relationshipsand present and future needs of persons who experiencememory loss from conditions such as dementia or a braininjury.Life Stories are a small “snap-shot” of the person’s life put into mini-photo albums or pictureframes and the information contained is used by health care providers to give more personcentred care. This guide is written from the perspective of using the Life Story as a tool tobetter support the care for persons with dementia.Dementia is an umbrella term for a cluster of progressive brain syndromes that affect aperson’s ability to think, reason and advocate for themselves. Alzheimer Disease is one ofthe more common types of dementia. As dementia progresses, long term memory of past lifeexperiences remains active the longest, while short term memory deteriorates. By using theinformation in the Life Story books caregivers will be better able to meet the needs of theperson with dementia when they are no longer able to speak on their own behalf. Thesebooks are intended to help enhance the care-giving relationship and satisfaction betweencaregivers, persons with dementia and family members and thus improve quality of care andlife.What is person centred care?Person-centred care is an idea that originated from Professor Thomas Kitwood2 in the U.K.in the 1990’s. While traditional models of dementia care have focused mainly on physical1This Guide to Creating a Life Story for Care Giving is one of a number of education and practice support tools developedby the Kootenay Boundary Dementia Core Working Group during the implementation of their chosen IH PhasedDementia Pathway priority to promote personhood in dementia care. At the time of its development, this grouppartnered with Selkirk College in the winter of 2010 to pilot the materials. The KB Core Dementia Working Group wishesto gratefully acknowledge the efforts and energy of those Human Services Program students involved in drafting thisguide and piloting the Life Story template during the Winter of 2010.2Kitwood T, Bredin K (1992) Towards a theory of dementia care: person‐hood and well‐being. Ageing and Society 12:269‐2871

care needs (e.g., bathing, dressing, feeding), person-centred care recognizes the needs ofindividuals as whole persons. Person-centred care is about improving quality of life forindividuals with dementia by: using unique information about the individual to plan and deliver personalized care;focusing on the needs of the whole person, not isolated tasks of care;valuing the retained abilities of the person, rather than focusing on losses;attempting to continue the pattern of people’s lives by honouring historicalpreferences;engaging the person in meaningful conversations and using memories and picturesto provide comfort and pleasure.Who might use Life Story books?Life Story books can be used by family members of the person with dementia while theperson is living at home. The information can also be used by health care staff incommunity, adult day centres, hospitals and nursing homes. Life Story books are also anexcellent teaching tool for students in the fields of human care.How can Life Story books be used?These books can: provide a quick reference for new caregivers to discover likes and needs of theperson; help celebrate life achievements, special events, holidays, and other specialoccasions that have been historically important to the person; promote and support mental stimulation; provide emotional comfort and pleasure; help engage the individual in meaningful conversations about the past wherememories are more vibrant and clear; encourage social interaction between the person, caregivers and families caring forthe person; help distract and divert the individual when upset; provide meaningful interaction to calm the person if overwhelmed by other people,events and noises in the environment; be a refocusing tool to support the person when in new and unfamiliar surroundings(e.g., in hospital, moving to nursing home, changing rooms, etc.).2

Creating a Life Story bookThere are four sections to the Life Story book. The categories of information were selectedfrom research to best represent information that is helpful for caregiving. The followinginformation explains the intent of each category and will guide you to ask the right types ofquestions.1. My Life ReflectionsDescription: This section is best explored in one or more conversations with theperson with dementia. As their long term memory is often the sharpest, they likelycan tell you interesting stories about what is important to them! Ask a few openquestions, then simply listen with all your attention. The person will tell you aboutthe events in their life that were most important, most funny, what achievementsmade them feel proud, or what lifetime habits make them feel most comfortable.Cues found in the Life Story template: I am / I was / I did (List Major Life Achievements andAccomplishments) I always (Identify Life-long Habits that would help provide care) I remember When I (Identify significant positive memories, life and/orhistorical landmarks (e.g., marriage, children, sports, war years, immigrating,familiar family stories, etc.).Examples of conversation starters: “Can you tell me about the time you ” (first came to Canada, got married,had your first job, your children were small, etc.) “What did you used to do for work?” “What work/job did you enjoy best?” “Do you enjoy sports?” “What sports did you enjoy?” (Ask specific sports,e.g., hockey, ball) “What was it like back then when you ” (worked for the railroad, raised yourfamily up the lake, rode to school on horseback, etc.)Helpful Tips: Use old photo albums or pictures, or ask the person to tell you the story of‘back then” to trigger rich conversations. Capture the story as the person recalls it. Accuracy of who did what andwhen is not important. Keep the memories positive; there is no therapeutic benefit in bringing upunhappy times or painful memories in the context of creating a Life Story. It ishelpful to listen to the underlying emotion as the story is told to know if youshould include it or not. If it brings laughter and bright eyes, it’s a keeper. If3

the person is sad, comfort them, distract them and move on. Do not includethis information in the Life Story.Write down the information in the first person, using the words “I” or “my” as ifthe person was speaking directly to care providers. e.g., “I am a good cook.”,“My mom was always proud of us kids for helping around home.”Capture the information in whatever tense the person speaks, e.g. “I was anengineer” versus “I am an engineer”. If the person mixes tenses, that is fine,it captures where their memories are strongest and what period of time theybelieve themselves to be living in currently. This type of information is usefulfor providing care.2. My Family and HomeDescription: This section is intended to capture the personal information of thepeople and the home as recognized by the person with dementia.Cues found in the Life Story template: Family, friends and pets who are important to me are: (List names andrelationships, both current and past); My favourite memory(ies) of time with (family, friends, pets) is/are My special memories of home are (specify) Examples of conversation starters: “Can you tell me who this is?” (using an older “long ago” picture) “Tell me about your home – what do like best about it?” “Are you an animal lover? Do you have pets?”Helpful tips: It is common for persons with dementia to not recognize their spouse orchildren, because in their memory, that person is living at an earlier time andshould look much younger. Using photos of an earlier time will often enhancetheir recognition of important people. “Home” can have many meanings. It can be the last place they lived, theperson’s home from the years of marriage and raising a family, or it may bethe home of their childhood. Listen to the context of the home. To betterunderstand which home they are talking about, ask the person who lives withthem, then ensure that you accurately describe the details of the home theyenjoy talking about most.4

3. Helping Me in Everyday LifeDescription: This section is intended to capture the unique personal preferencesand life long daily habits of each individual. This information can be used by careproviders to re-create and continue those patterns of living in a respectful way thatprovide the person with familiar structure, expectations and comfort. Theinformation can be gathered from the person with dementia in the earlier stages orfrom a caregiver who knows them well.Cues found in the Life Story template: My personal preferences when helping me with my care include:(examples: sleeping position; food/beverage favourites) I like talking about I like it when others ask me (for , about .) I am most comfortable when What give me pleasure is (sensory information: sight, hearing, smell,touch, taste)Examples of conversation starters: It helps the people who care for you to know what your habits are and whatchoices you prefer in everyday life. Can I ask you some questions aboutfood, sleep and other everyday things? Can you tell me what a “typical day” looks like for you? Note: If not able to answer the above question, try using simple, directquestions such as:o Tell me about sleeping – are you a night owl or a morning lark?o What time do you like to get up in the morning? go to sleep?o What is your favourite food? Do you have any you really dislike?o What do you like to drink in the morning? afternoon? before bed?o Some people like showers, some like tubs to soak in. What do youprefer?o When you go to sleep, what is your favourite position to fall asleep in –on your side or back? If you need help with something, do you feel comfortable asking for help ordo you like it better if someone offers to help you? What gives you great pleasure or comfort? e.g., music? socks to warm yourfeet at bedtime? flowers? hugs?Helpful Tips Many older people are not comfortable talking about their personal needsand preferences or asking for help. Past generations may have more of astaunch, uncomplaining and self-reliant attitude to life. It may take a fewconversations to gather this information in a sensitive and respectful manner.5

4. I look forward to (Hopes and Dreams)Description: Too often caregivers forget that people with dementia are still livingtheir lives and may have hopes, dreams and things they look forward to even if theyare no longer able to say this or organize it for themselves. This “looking to thefuture” category of information is another very important way of continuing lifepatterns and creating hope and comfort in the moment.Cues found in the Life Story template: My favourite traditions, holidays, seasons are I always celebrate (describe) I want to see I hope to . (List known aspirations and hopes) I always wished I would like to Examples of conversation starters: Tell me about how you celebrated (your birthday, your anniversary,Christmas, Hanukkah, Easter). What is the celebration that you have always enjoyed? Which season do you like best? What did you do in the (winter time, spring time, summer, fall ?) What do you look forward to ?Helpful Tips: As dementia advances the person loses a sense of time and memory. It is upto the people around them to organize and provide a larger sense of timethrough the use of seasonal events such as holiday decorations, drawingattention to changing weather, and continuing special celebrations that theperson always enjoyed (birthday, religious holidays, and anniversaries).6

Practical Considerations1. Life Story Template:The four categories of personal informationcan be used in many different ways. A freeelectronic (Power Point) template has beencreated and is downloadable nditionDisease/Dementia/Pages/Resources.aspx. Information can befilled in and saved directly into the template,then printed and put into a small photo album.The template can also be printed andhandwritten if that works better. The use ofpictures is encouraged (see section on photosbelow). However, other formats can also beadopted. When creating a Life Story, one canincorporate the four categories of personalinformation into picture frameworks (seeexample on right), story boards, or other typesof creative presentations.Example of using the four categories ofLife Story information in a picture framepresentation to hang on a wall.2. Telling the Person’s Life StoryWhen writing the person’s Life Story, it is important to capture the voice of theindividual as if they were speaking and telling their story. When a caregiver reads theLife Story, the information should sound as if the person is speaking directly tocaregivers. Where you can, use quotes. For example, “I remember when I ”; “I liketo ” Remember the focus for personal information should be of a positive nature (e.g.,Life Achievements) and avoid capturing life tragedies or upsetting events.3. Permissions and RespectBefore engaging in creating a Life Story book, it is important to seek the permission ofthe person with dementia if at all possible, and/or of a key family member(s) if theindividual is unable to give informed consent. While many family members may be thecreator of the Life Story book, the creator may not be related to the person (e.g., maywork in a nursing home, an adult day centre, or be a student or volunteer, etc.).Seeking permission is especially necessary if you are using photographs that may haveother family members in them. Contacting a key family member to seek familypermission is recommended.7

Respect for the person with dementia requires being sensitive to their stories,