redefining memory loss: “Creating Connections in Caregiving”

WORDS : DEB KAUL

“Cognitive impairment is such an isolating disease,” says Dale Rivard, a former deputy State’s attorney from Grand Forks who is undergoing tests to determine what is causing his progressive cognitive impairment. “The stigma associated with dementia is so powerful. From the moment you are diagnosed, people look at you differently, and they treat you differently. They avoid you.”

Unfortunately, significant loneliness among caregivers and individuals living with significant memory loss is endemic. The stigma associated with memory loss, especially if it’s associated with Alzheimer’s disease or related dementia, causes most individuals with the condition to deny or ignore the cognitive changes they are experiencing. They avoid visiting with their medical providers about their concerns and often deny to themselves and others that anything is wrong.

Instead, they live in denial, isolate themselves in their homes, and become apathetic, lonely, anxious and depressed. Sadly, their loved ones often follow suit. Hopelessness, helplessness and a sense of powerlessness frequently set in and too often become significant mental health concerns for these individuals.

Memory Café is passionate about liberating these individuals from this debilitating stigma. We want to change the culture and language associated with memory loss by shifting the stereotypical tragedy narrative of dementia to one of hope and empowerment. Many people, like Kate Swaffer, Christine Bryden and Dale Rivard are demonstrating that it is possible to live well and long with various causes of significant memory loss, including dementia. But, in order to do so you need support, education and community engagement.

“It is indeed possible to change what is referred to as the ‘long good-bye’ into a ‘long hello,’” says Cathy Greenblat, Ph.D. in "Love, Loss and Laughter., Looking at Alzheimer's Differently." Shifting our focus from a biomedical model to a social model that views dementing illnesses primarily as disabilities is key to successfully shifting this paradigm. How the individual is affected by the disability is dramatically shaped by the quality of care,” she says.

Memory Café agrees. We provide impactful programming that instills effective strategies for maintaining capacities, independence, and quality of life for individuals living with memory loss and their care partners. It provides a warm, safe place for people living with memory loss and their care partners to meet with others who are living with similar circumstances.

“It’s so important to get out of the house and meet with others who are living with the same condition,” states Rivard. “Just because some doors close on you and it’s completely devastating doesn’t mean you give up. You don’t. Dementia is a disability you need to deal with. It’s so helpful to focus on what you can do.”

Rivard and others living with cognitive impairment will participate in Memory Café’s annual “Redefining Memory Loss” caregiver conference in June. He will be joined in a panel discussion by several care partners. Our keynote speaker, Cameo Rogers from Omaha, Nebraska, will focus on educating and supporting caregivers who frequently feel frustrated, judged, alone, unequipped and exhausted. Cameo will help caregivers identify ways to improve communication, both verbal and non-verbal. She will help them identify the remaining abilities and strengths of their care recipients in order to prevent and manage behavioral expressions and maintain dignity. She will also encourage participants to share their stories and focus on self-support resources and strategies, such as mindfulness. Cameo is a passionate advocate for caregivers.

THE CONFERENCE IS OPEN TO professional and community caregivers, and will be held on June 4 from 10:00 a.m. to 4:00 p.m. at the Holiday Inn in Fargo. To register call 701-404-6712 or search “redefining memory loss” at eventbrite.com. The registration fee, which includes lunch, is $30 for community members and $60 for professionals. Approved for 4.0 hours ND LSW CEUs.

Christian Adoption Services invites you to a dessert reception as we share adoption stories and celebrate community advocates.

Holiday Inn 3803 13 th Ave S, Fargo

Monday, April 27 Event 7-9 pm

Reserve your seat for this FREE Event! ChristianAdoptionServices.org

701.237.4473