Every Picture Tells a Story
by Mind Over Matter V 13:
Life Story Books for People with Dementia
Everyone has a life story, consisting of their unique memories about events and experiences accumulated throughout their lifetime. For many people, the process of reminiscing about their life story, and capturing details in a life story book, is both enjoyable and therapeutic.
For individuals with dementia in particular, life story books provide a wide range of benefits, with the process of initially creating the book being just as valuable as incorporating the book into their day-to-day activities thereafter. As a result, life story books are now a popular psychosocial intervention in the dementia-care field, particularly in the U.K.
WHAT IS A LIFE STORY BOOK?
A life story book is a type of reminiscence therapy that can take many different forms and can be created using a variety of approaches. Who is involved in its creation, what information is collected, and how, as well as the format of the end product and its contents, varies depending on the intended purpose of the book. Is the life story book being created for personal reasons (e.g., to preserve memories and share with family and friends) or to help paid caregivers and health professionals get to know the person so that they can better tailor care to individual needs, or perhaps a combination of both?
The end product might be a printed book that includes photographs and text, or a digital book that can incorporate audio and video as well. The contents might be thorough and shared chronologically or might be a collection of select memories in no particular order.
A LIFE STORY BOOK TYPICALLY SHARES STORIES ABOUT THE PAST BUT MAY ALSO INCLUDE INFORMATION ABOUT THE PRESENT (I.E., INTERESTS AND PREFERENCES) AND THE FUTURE (I.E., HOPES AND WISHES).
The book can be long or short, or any length in between. The process can be extensive and complex, with information collected over time through structured or unstructured interviews, or it can be quick and simple, using a short set of questions from a standard template. The information can be collected on a one-on-one basis or in small groups – by family or friends, caregiving staff, a trained volunteer, or a professional therapist or researcher – with or without direct input from the person with dementia.
BENEFITS OF LIFE STORY BOOKS FOR PEOPLE WITH DEMENTIA
To understand the collective findings across numerous studies, Teuntje Elfrink and colleagues conducted a review of life story book interventions for people with mild cognitive impairment (MCI) or dementia, conducted between 2013 and 2017. In total, they reviewed 14 studies involving varied types of life story books and shared their findings in 2018 in International Psychogeriatrics.
Their review revealed many benefits of life story books for the individuals with dementia, as well as their formal and informal caregivers. For example, life story books were found to help:
· trigger memories and mostly positive emotions;
· improve autobiographical memory, mood, depression, and quality of life (compared with care as usual or no treatment); and
· improve relationships between individuals with dementia and their caregivers.
Significant improvements were also observed in staff attitude and knowledge. Importantly, the researchers noted that no negative effects were reported in any of the studies reviewed. According to Ms. Elfrink, a researcher and lecturer at University of Twente in the Netherlands,
“OUR FINDINGS CONFIRM THAT LIFE STORY BOOKS ARE A PROMISING INTERVENTION FOR PEOPLE WITH MCI OR DEMENTIA, PROVIDING NUMEROUS IMPORTANT BENEFITS.”
More research is needed to confirm the benefits and determine what types of life story book interventions work best for whom. However, the existing evidence (while limited) is quite positive.
BENEFITS OF REMINISCENCE THERAPY FOR PEOPLE WITH DEMENTIA
A different group of researchers – Dr. Bob Woods and colleagues – looked at the broader concept of reminiscence therapy and its impacts on people with dementia, conducting a review and meta-analysis of research studies on the subject published up to April 2017. They reviewed 22 studies involving a total of 1,972 people with dementia and looked at the combined data from 16 of those studies in the meta-analysis.
Overall, the researchers concluded that there is some evidence that reminiscence therapy can help improve a person with dementia’s quality of life, cognition, communication, and possibly mood, with no evidence of any harmful effects. These findings were published in 2018 in the Cochrane Database of Systematic Reviews.
“We found that the effects of reminiscence therapy on people with dementia varied depending on the process used and the setting where it was undertaken,” explained Dr. Woods, Emeritus Professor at Bangor University in the U.K. “Although more research needs to be done to further build the evidence base, reminiscence therapy shows great promise overall as an intervention for people with dementia.”
TAKING LIFE STORY BOOKS DIGITAL
With the ever-expanding development of technology, life story interventions that involve the creation of digital books are becoming increasingly popular. Digital life story books allow the inclusion of audio and video content, in addition to the usual text and photographs that can be found in a conventional paper book. It is easy to imagine how engaging it can be for those with dementia to hear their favourite music, listen to their stories being read by a narrator, watch clips from their favourite movies or news footage about significant historical events, and hear personal messages from loved ones.
Although many older adults enjoy life story books in paper format, several studies have found that digital approaches to reminiscence therapy are preferred by individuals with dementia and their caregivers compared to conventional approaches.
Another study conducted by Dr. Bob Woods and colleagues – published in 2020 in The International Journal of Reminiscence and Life Review – specifically looked at digital life story work for people with dementia, examining three different contexts for creating digital life story books. Six people with dementia (each paired with a family caregiver), as well as four care staff, took part in the study.
Each participant with dementia created a life story book over a six-week period using an online application (or "app") developed by a Welsh social enterprise, Book of You. The participants were drawn from three different groups who had prepared their books either: (1) as part of a community group; (2) in one-on-one sessions completed at home; or (3) in one-on-one sessions completed in a care home.
All participants in the study reported that they enjoyed the intervention, found it useful, and valued the ability to include multimedia elements in their books, regardless of their particular study group.
CREATING AND USING A DIGITAL LIFE STORY BOOK HELPED THE PARTICIPANTS WITH DEMENTIA RECONNECT WITH THEIR PAST BY EVOKING FORGOTTEN MEMORIES, AS WELL AS HELPED CARE STAFF DEVELOP AND STRENGTHEN THEIR RELATIONSHIPS WITH RESIDENTS AND THEIR RELATIVES.
“Although enjoyment was similar across the various contexts, we did discover some interesting differences between the study groups. For example, when the books were created one-on-one, more weight was placed on the value of the reminiscing aspect, whereas when working in a community group setting, more emphasis was placed on the socializing benefits of the experience. Also, it appears that one-on-one sessions may be more effective than group sessions for learning the technical aspects of creating a digital book,” said Dr. Woods.
“Although this was a small study, it provides valuable insights into the usefulness of digital life story work with people with dementia, and how the benefits might vary depending on the context.”
TIPS FOR ENGAGING IN LIFE STORY WORK WITH PEOPLE WITH DEMENTIA
1. UNDERSTAND THAT LIFE STORY WORK IS NOT FOR EVERYONE.
As fun and helpful as creating a life story book can be for many individuals with dementia, not everyone wants to try this intervention. Some people are simply not interested, while others may feel distressed at the thought of sharing their memories. So, extend an invitation to participate, and respect the person’s feelings about whether to proceed or not; do not try to pressure anyone into taking part.
2. CONSIDER YOUR GOALS AND AVAILABLE RESOURCES.
Why is the life story book being created, who is available to help with the process, what are the skills and interests of those involved, and how much time do they have available to work on the project? Answers to these questions will guide the approach you take, the tools you use, and the end product that you ultimately create.
For example, if time is scarce and the intended end use of the life story book is to help care staff provide person-centred care, then perhaps you should use a template of standard questions to collect some key information and capture it in a short summary (i.e., one to two pages). At the other end of the spectrum, if the goal is to create a book to help improve a person with dementia’s memory, mood, and/or quality of life, you will probably take more time to collect stories and create a longer book, either in paper or digital format. Alternatively, you may wish to create two different versions of the book: namely, a short summary for care staff and a longer book for the person with dementia to enjoy.
3. INVOLVE THE PERSON WITH DEMENTIA AS MUCH AS POSSIBLE IN THE PROCESS OF CREATING THEIR LIFE STORY BOOK.
To the extent possible given the stage of dementia, tailor the experience to the goals and preferences of the person with dementia. Let her or him decide the content of the book, how it will be used, and by whom – even if this means that not everything contained in the book will be accurate.
Remember that all individuals, whether they have dementia or not, have unique perspectives on every experience, and the retelling of stories based on those experiences is prone to selective recall and potentially a distorted view of the truth. It is important to keep in mind that the goal is to help people tell whichever stories are most important to them, in whatever way is best for them.
Getting started on life story work early in the dementia journey is ideal, in order to allow those with dementia the maximum opportunity to be involved in creating their own book. However, it is never too late to use life story work to benefit a person with dementia; the process just unfolds differently if the person with dementia is no longer able to recall and share stories (in which case, a close family member or friend can provide content for the book).
An earlier study conducted by Dr. Bob Woods and colleagues – published in 2014 in Aging & Mental Health – found that there were benefits for the person with dementia, their relatives, and care home staff from creating life story books, whether the person with dementia was actively involved in the book’s creation or a relative created the book without the involvement of the person with dementia.
“While it is ideal to involve the person with dementia in creating their life story book, sometimes it’s just not possible,” said Dr. Woods. “We were pleased to find that in situations where a life story book is created 100% by a relative, the person with dementia still experienced improved quality of life and autobiographical memory from using that book after it was done. And, the relatives benefitted too, enjoying a sense of accomplishment from doing something meaningful for their loved one.”
4. KEEP POTENTIAL PRIVACY ISSUES IN MIND.
Everything that the person with dementia shares during the story collection phase of the process does not need to be captured in the life story book. Consider who will have access to the book and what information the person with dementia would be comfortable with those individuals knowing, and perhaps what she or he would prefer to keep private. If the book will be accessible widely, then it would be wise to include only information that the person with dementia would be comfortable sharing with others.
If possible, directly ask the person with dementia what stories she or he would like included, explaining how the book will be used and by whom. If the person with dementia is no longer capable of making those kinds of decisions, then family members and/or friends who know the person well can use their best judgement to decide on the person’s behalf.
5. BE AWARE THAT UPSETTING MEMORIES AND NEGATIVE EMOTIONS MAY SURFACE.
Everyone’s life consists of rich and varied experiences, some positive and some challenging, so it makes sense that when a person recalls her or his life stories, a mix of positive and negative memories and corresponding emotions may arise. Studies looking at the responses of people with dementia to reminiscence therapy have found that negative responses are relatively rare compared to positive ones, and even in instances where negative memories and emotions did surface, the overall experience of the reminiscence activity was typically considered positive.
If you are trained to help individuals work through challenging emotions, you can provide the necessary support to help the person with dementia work through negative feelings if and when they arise. However, if you lack such training, avoid sensitive subjects and aim to keep questions focused on eliciting positive memories.
6. USE THE LIFE STORY BOOK REGULARLY BUT DO NOT OVERDO IT.
Make sure that you do not just create a life story book and then simply leave it on a shelf collecting dust. Use the book often as a tool to engage the person with dementia in conversation. Do not be insistent about using it, though. Be sensitive to the person with dementia’s interest, mood, and energy at any given time, reading her or his cues about whether it seems like a good time for going through the book or not.
Put the book away for another time if the person seems agitated or overwhelmed in response to the book. You might find that over time, the person with dementia’s response to different parts of the book changes. If possible, update the book itself to remove any content that becomes upsetting or simply skip past those parts when reading if you are unable to make changes to the book. You might also add new information and stories if you can, because a person’s story is ever evolving.
7. THE SOONER YOU START, THE BETTER
There can be a tendency to put off doing life story work, thinking you will get to it later. However, as dementia progresses, it becomes increasingly difficult for individuals to recall important life events and experiences. And the course of dementia can be quite unpredictable. Encourage people with dementia to begin capturing their life stories as soon as possible after diagnosis. According to Dr. Majse Lind, a postdoctoral researcher in the Life Story Lab at the University of Florida, "life story work can be beneficial for anyone, even those without dementia. And since none of us knows how much lifetime we have left, now is actually a great time for everybody to get started. You don’t need to wait until you’ve been diagnosed with something.”
Psychosocial interventions are nonpharmacologic (i.e., non-drug treatments or activities). They emphasize psychological, behavioural, and/or social factors (rather than biological factors).
Reminiscence therapy is the discussion of past experiences and events, usually with the help of prompts such as photographs, music, and/or objects (e.g., toys or candies from childhood, or antique household objects like a washboard), which help engage the senses to evoke memories and stimulate conversation.
MUSIC THERAPY
In addition to providing pleasure, music is also known to be an especially powerful memory trigger, even for people in the late stages of dementia. For more about music therapy for individuals with dementia, check out “If Music Be the Food of Life, Play On” beginning on page 31 in the second issue of Mind Over Matter® (available online at https://womensbrainhealth.org/mom/mind_over_matter_magazine_2016/).
USING THE PHONE TO COLLECT STORIES
In a study that is currently underway, researchers at the University of Florida are using an innovative approach to work with 60 people with dementia and their informal caregivers to create and use life story books. Dr. Susan Bluck and Dr. Majse Lind are using an older technology (the phone) to collect stories, combined with modern internet-based design technology to create digital life story books for people with dementia. The study is looking at the potential effects on the person with dementia’s identity and general well-being.
“Life story work is often done face-to-face, but phone-based interviews were the obvious choice as the tool for conducting life story interviews safely during the COVID-19 pandemic,” explained Dr. Lind. “We have found that sharing stories over the phone is working very well in our study. Using the phone to reach a person with dementia at home is ideal in many ways, allowing them to be in a familiar space with minimal disruption to their usual routine. Of course, we might have tried using a more modern type of technology for connecting with someone at home, like Zoom, but phones are a simple technology that pretty much everyone is familiar and comfortable with, and that’s especially important for a person with dementia.”
REACH OUT AND CALL SOMEONE
With phones being an effective tool for sharing stories, that means anyone anywhere can work with a loved one who has dementia on developing a life story book, or just have enjoyable conversations about the past without creating any end product at all. Perhaps you live across the country from a family member or friend who has dementia and have been wondering about how you could help with her or his caregiving. Engaging in life story work might be an ideal way for you to be involved, keeping you connected with your loved one in a meaningful way.