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How Sharing a Life Story Helps Dementia Caregivers

Conveying personal info lets others connect with your loved one

By Mike Good

(Editor's Note: This is the fourth in a series examining and interpreting a commonly used "bill of rights" for dementia patients.) 

One day while I was volunteering at a local adult day care, we had a new visitor who was confused and very unhappy that her daughter had left her there with us. She was agitated and was trying to leave.

Luckily, when they first arrived, her daughter had handed us a one-page life story about her mother who had dementia. After reading it, I was able to more easily connect with the lady.

(MORE: Training Dementia Coaches)

Sharing Your Knowledge

As we discussed her career as a teacher, her agitation slipped away and we ended up having a very nice conversation. Without that knowledge, things would have been more difficult for both of us.

If you’re the primary caregiver of a person with dementia, you know your loved one’s likes and dislikes. You can read their moods. You know their routines and the people in their world. Nobody can care for them the same way you do.

But the act of sharing your loved one’s life story empowers others to better understand his or her traits, to connect and to provide better dementia care. In turn, you receive peace of mind when you take time for yourself.

(MORE: Dementia Patients Have the Right to Be Loved)

A Different Reality

The reality of a person with dementia often slips into a past era of their life. For instance, it may be typical for the person to prepare for work each morning as they did for many years. Or they might start preparing to send their children off to school although their kids are fully grown and have left the nest.

When the people around them don’t understand this different reality, they often struggle to accept what seems like strange behavior. They may even try to correct the person and get in the way of their routine. This type of intervention generally causes the person with dementia to become further confused and agitated.

Losing the Ability to Hold Conversations

In addition to living in the past, at some point, the person with dementia will likely lose their ability to start and hold a conversation. This loss of communication, coupled with living in a different reality, puts them at further risk for becoming isolated in their own world.

However, when those around them know their life story, values and quirks, they can more easily join them in their reality. This flexible companionship generally results in a more peaceful experience with fewer negative behavioral issues.


Knowing a Dementia Patient's Story

One of the points from the Best Friends Dementia Bill of Rights is that patients deserve “to be with individuals who know one’s life story, including cultural and spiritual traditions. “

When caregivers look at the whole person and his or her experiences, they can plan activities that take into account interests, values and traditions while avoiding ones that may lead to confusion and agitation.

For instance, many people celebrate Easter and enjoy watching children hunt for eggs. But to a person who has never celebrated Easter, associating a rabbit with eggs — and adding in a silly person dressed as a giant bunny — could very well seem odd and confusing.

The United Kingdom’s Alzheimer’s Society recommends families create life history books with their loved ones. Not only does this create an enriching activity for the family, but the book can later be used to inform anyone who may be caring for the individual.

(MORE: The Right to Get a Proper Dementia Diagnosis)

While short-term memories are often lost early in Alzheimer’s disease, a person’s long-term memories and sense for who they are as a person can exist throughout the entire disease. Accessing their memories and embracing their reality and character is an important part of enriching the life of a person with dementia.

So while it may not be possible to ensure the person with dementia is always around people who understand them, it is possible to empower the caregivers by documenting the person’s story and sharing it.

Have you written your loved one’s story? Please share with us how you use it to improve their care.

Mike Good is founder of Together in This, an online community helping family members caring for someone with Alzheimer's. His goal is to provide information and tools to help caregivers take control and find peace-of-mind. Read More
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