Caregivers Invited to Try Journal Writing

by ALSN Staff on Mon, 2002-07-01 13:45
John and Suzanne Candell John and Suzanne Candell in 1993

Suzanne Candell is looking for 100 ALS caregivers to help test a method of affecting emotional and physical well-being in caregivers. Each participant will get a $25 gift certificate and the satisfaction of helping to identify coping tools for caregivers like themselves.

"The Writing and Caregiver Well-Being Study" investigates whether journal writing — akin to writing in a diary — can have an impact on the health and well-being of people caring for someone with ALS or another neurodegenerative disease such as Parkinson's or Alzheimer's.

Dad had ALS

The study has personal meaning for Candell, a licensed clinical psychologist in Minneapolis and a doctoral student at the University of Minnesota. Her father, John Candell, died five years ago after a nine-year battle with ALS.

"I loved him very much and he is very much missed," Candell says simply. "Watching his grace in the face of his decline, and the care that my mother offered to him, I was really moved by the whole experience. I became interested in seeing whether or not there is a way to develop self-help tools for caregivers that are easily accessible and have been empirically tested."

She decided to test the effectiveness of journal writing because of her love of writing and language, which stems in part from "the joy my father took in speaking — telling stories, joking around, discussing the topics of the day. He was a lawyer, and a great arguer," she recalls with a laugh.

How to participate

Candell is looking for people ages 18 and older who are currently caring for a family member with ALS or another neurodegenerative disease, and who have access to the Internet. (She expanded the study because of difficulty in locating enough ALS caregivers.) Participants don't need to live in the same house as the person with ALS.

The study, which must be completed online, takes two to two-and-a-half hours of time over five weeks, and involves four sessions of answering questions and writing journal entries. All information is kept confidential. Journal entries aren't read, but are counted for the number of words they contain. Once all four sessions are completed, participants will receive a thank-you gift certificate for, an online bookstore.

For more information about the specifics of the study, go to and click the link for the "ALS Caregiver Study."

(Editor's note: The study above is closed, and is no longer accepting participants.)

ALSN Staff
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