How Life Stories Can Lead to Better Dementia How Life Stories Can Lead to Better Dementia CareCare

Experienced dementia caregivers know that more information about their patients leads to better care. Getting insight into patient’s lives can be challenging, because their patients are often unable to tell their own stories. That’s why advocacy groups in the US, Canada, and elsewhere recommend that families write their loved ones’ life stories to share with caregivers—but trying to write them can give family members a case of serious writer’s block. Here’s how life stories can lead to better dementia care and what to know about writing your parent’s story.

Life stories help caregivers connect to clients with dementia

In dementia-care settings, getting residents engaged with the environment and other people is an important goal. Knowing “the person behind the dementia” makes it easier for caregivers to get your parents involved in an activity or social event. For example, if your mom’s caregivers know she was an avid gardener, they may be able to interest her in arranging flowers or caring for houseplants. If you dad was a musician, hearing songs he loved to play can spark memories and conversations.

Patient stories help patients and caregivers, so why aren’t they part of every dementia patient’s care? Telling a parent’s story can be a challenge, even for people who are comfortable writing in other situations. One hurdle is that many storytelling forms for families have dozens of pages—too long for most families to fill out and almost certainly too long for busy caregivers to read.

The other hurdle is emotional, according to former journalist Jay Newton-Small. “To [family members], being asked to contemplate and then definitively answer what makes their loved one them, special, exceptional, challenging—writing that down feels final and thus hard.” Newton-Small knows this firsthand. Her experience with her father’s dementia care story was featured in the Washington Post. She founded MemoryWell to provide professionally written, quick-to-read life stories for dementia patients and their caregivers.

What makes a good dementia-care life story?

Newton-Small said that most of the stories she and her fellow journalists write for MemoryWell clients are 450-word stories that fit on a single printed page for easy reading and display. The typical cost is around $250, “but a lot depends on length.”

For families who want to know more about the story writing process, Newton-Small offered some tips. She noted that the opening sentence is always the hardest to get right. Then “we try to find an anecdote that best encompasses a person, that shows what they were like. After that, the story is usually fairly simple, starting at childhood and tracking their lives until current day. Sometimes that anecdote is about work. For others, their anecdotes are more personal, about love or loss, a hobby turned calling.”

Whether you hire someone to write your parent’s story or write it yourself, Newton-Small recommends viewing the story as a tool rather than the last word. “[It isn’t] the final draft of their loved one’s life. [It’s] simply a guidepost for others to follow, to help them.”

Learn more about dementia care and research on the blog.

Casey Kelly-Barton is an Austin-based freelance writer whose childhood was made awesome by her grandmothers, great-grandmother, great-aunts and -uncles, and their friends.


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