According to a recent New York Times article, a unique “storytelling” workshop is conducted weekly at Northwestern University for people with Alzheimer’s disease (AD) and their significant others.
Couples are invited to “keep the spark alive,” says the New York Times, during an 8-week workshop that encourages those dealing with AD to talk openly about coping with the many challenges of dementia.
The storytelling workshop was launched in 2014 by Lauren Dowden, an intern at Northwestern’s Cognitive Neurological and Alzheimer’s Disease Center. Dowden says she started the program secondary to her perceptions while working with couples impacted by Alzheimer’s dementia. She observed that family members reported they did not feel their concerns were being addressed about dealing with loss of memory, jobs, independence, or interactions as a couple.
The Workshop
The couples in the workshop were given an assignment each week to write a short story about some of the events that occurred in their lives. Next, each person was asked to share his/her story in front of an audience. The stories told were said to be reminders of happier times and challenges that people share—many of which get forgotten when dealing with life’s circumstances (such as a diagnosis of AD). By sharing their personal experiences with others, the couples were reminded of their own resilience, strength and love for each other.
“It’s been an amazing experience for us,” said one of the group participants, married to a person with AD. “Creating our story revealed such a richness in our life together and is helping us keep that front and center going forward.”
Participants reported that the program offered an opportunity to discuss difficult issues in their they had with each other, while affording couples an opportunity to keep in the forefront of their perspective the many positive aspects of their relationship(such as how well they relate to each other).
Another couple reported that being able to talk about the devastation of the AD diagnosis with others really helped them cope with the severity of the impact of the disease on their lives, while facing dementia more head-on. In the end, many couples said they felt the program allowed them to adopt feelings that the disease was not as bad as they initially perceived it to be.
One couple involved in the program reported to The New York Times that they had presented their 20-minute story, nineteen times to students of pastoral care, medical students, social workers in training, and more. The couple stated that telling their story enabled them to keep in touch with the fact that they were still a couple and NOT simply a patient and caregiver; although, the person with AD was reportedly 85 percent dependent on the spouse/caregiver.
“I feel we’re giving people information that could be very valuable in their future. It’s helpful to them to see us smile, have a good time and give a good report-as well as a bad report-about what goes on with this disease. It’s helpful for people to hear it from someone who has it, and it’s helped us avoid getting so morose,” said one participant of the program.
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