Several factors may prevent people living with dementia from sharing their life stories so that others may know them and understand who they are. First, they may not be able to tell their own story in words. According to the Alzheimer’s Association, many living with the disease may gradually lose the ability to communicate. Their memories may also get stuck in their younger years, leaving gaps in other parts of their lives. Finally, caregivers and family members may begin to view a person living with dementia only through the lens of the disease, not as a whole person. Unfortunately, this may lead to negative consequences for those living with dementia, including the inability to form a bond with care partners, a lack of purpose and even a lack of cooperation or participation in their care and daily routines.
What is a life story?
One way we support our residents living in our Alzheimer’s and dementia care communities is by learning their life stories to help them preserve a sense of self and create a feeling of belonging. A life story is more than a laundry list of biographical information; it describes a person’s routines, habits, preferences and personal styles. A life story also captures life events and details from a person’s past that help us understand who a resident was before dementia, including understanding their family systems.
“The life story is the most powerful tool we have for providing person-centered care,” says Juliet Holt Klinger, a gerontologist and Brookdale’s expert on dementia. “It is not enough to simply gather information. We need to integrate the information we learn from our residents and families into our daily interactions and make sure our care associates understand each resident’s unique story.”
Life story work may help give care associates opportunities to see the person behind the resident. It may also help family caregivers uphold their relatives’ identity while helping the voice of the person with dementia be heard.
How we learn our residents' stories
Instead of asking families to complete questionnaires on their own, we interview family members and the residents themselves to gather stories and information. We also focus on showing, not telling, their stories using anecdotes that get at who a person is, like a wedding anniversary speech, a story about a memorable vacation or a grandchild's accomplishment. These are the details that can get to the heart of who a person is. We also ask about career achievements, favorite topics of discussion, pets, hobbies, sports and favorite movies and books to help add more layers of detail and better understand our residents.
“Knowing our residents gives us the tools we need to truly partner with them in their care, and it allows us to shape their daily experience with meaningful, purposeful engagement,” Holt Klinger explains.
On the wall outside of each apartment of our Clare Bridge residents is a shadow box with items that create a small “biography” for the resident. Families help us decorate the shadow box with personal items and photographs. It serves as a guide to a resident’s history and a tool for our care team to get to know each resident. Shadow boxes can also help residents recognize their room.
Life stories are valuable for other residents, too. Each of our residents has a unique story that deserves to be honored. That’s why we created My Life Story for assisted living residents, a storytelling program that allows them to share their perspectives and wisdom with others while making friends and learning from their life stories along the way.
If you and your family want to record and share a loved one’s life story, there are tools available to help. MemoryWell has a network of professional writers to help you capture your family history. With several packages to choose from, a writer will interview you or your family member and then create your story. During this challenging time of the pandemic, MemoryWell is offering its timeline application at no cost for families of our Clare Bridge residents. There’s also a new voice app from a Swedish energy company called Memory Lane. Using a smart home speaker, the app can help piece together a detailed story of your life through a “conversation.” After you finish, you can order an audio recording or a printed book to share with family and friends.
To be known and to be understood may help those living with Alzheimer's or dementia maintain a sense of self so that they may connect and engage in a meaningful, fulfilling life.
If you or your family are facing a dementia diagnosis or want to learn more about how to help support those living with Alzheimer's and dementia, we can help. Click here for more articles on Alzheimer’s and dementia.
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