A “virtual dementia tour” (VDT) program held at Commonwealth Assisted Living & Memory Care on Jan. 7 was a journey paved by contrasts. Wearing gear denying the senses leads to understanding the disease a lot more. The tour’s goal was to deliver caregivers a new understanding in a new year.
Coldly and clinically looking at the disease in the light of modern science, dementia can, at best, be diagnosed, delayed and…dealt with. Empathy is critical for the quality of life of patient and their families.
More than 40 medical professionals in addition to family members of dementia patients participated. According to the group who designed the tour, (Second Wind Dreams), Alzheimer’s Disease (AD) is diagnosed every 68 seconds across the United States (AD is a disorder related to dementia.) Seven out of 10 people with dementia live at home where family and friends provide 78 percent of the care. Dementia is the sixth-leading cause of death in the U.S. and it has no cure.
Information supplied by Commonwealth’s Regional Director of Residential Programs Paula Harder reports the medical field is not currently prepared. An estimated 21,000 geriatricians are needed (there are 7,600 nationally). This works out to a little over four geriatricians for 10,000 seniors with AD. Harder’s information describes this discrepancy as a “chasm” which creates overspending healthcare dollars from decisions of doctors without dementia care training.
Harder told VDT participants that studies indicate dementia patients no longer have the ability to self-soothe, which leaves them unable to shut out even “white noise.” The resulting elevated adrenalin rush for hours contributes to patients’ frustration and anger and caregivers’ frustrations. Breaking down even the simplest tasks is complicated (brushing your teeth takes more than 150 actions) to dementia patients.
She talked with family members about understanding that it is a big leap for family members to become caregivers because it means the loss of their previous relationship (as a child, sibling or spouse) with the patient. Harder said another complication is dementia damages cognitative function while patients look well physically.
Participants uniformly shared they now understood, for instance, dementia patients’ repetitive actions are about control as they try to orient themselves in chaos. Commonwealth’s Janie Carico talked about how quickly memory unit patients strung green beans and shucked corn. Both jobs were something familiar to them in childhood.
“Our tendency is to think patients are acting abnormally,” Harder said. “Imagine in the middle of their sensory overload, suddenly a person appears to take you for a bath. They (patients) are acting normally by punching you. We all would in their circumstances.”
She explained she wanted practitioners in the VDT to get out of their “clinical head (mindset)” and think outside of a “clinical box” to understand how to lead a patient back to the familiar or what’s meaningful to them, a purpose to their chaos.
“Not being able to see was horrible. I could read but it didn’t make any sense,” said Physical Therapy Assistant Jonathan Warren. “I thought, ‘What am I supposed to do?’”
Registered Nurse Ashley O’Dell said the unending barrage of noises made her anxious and said going through the VDT gave her a new perspective on why patients behaved the way they do.
“I was very aware but didn’t know what I was supposed to do,” said caregiver Suzanne Collins, who attended the VDT with her husband, Larry. “I could feel the instructions but I couldn’t see them. All the noises in my ears would drive me crazy. I was afraid I’d do something wrong.”
Larry Collins agreed he quickly found he didn’t know what to do after entering the VDT. The two participated in the tour to better understand Larry’s mother, Norene, who is a dementia patient.
“I just thought, ‘Do I just stand there or sit in a chair?’” said Larry Collins. “I was aware of a lot of thing but I didn’t know what to do. Everything was dark. It was hard to focus. I thought I saw a lady, a shadow, but I couldn’t sit down. I found a towel and just thought I was supposed to fold it. Now I can see being frightened all the time.”
Organizers of the VDT said it was designed to shed light on the seemingly inappropriate and difficult behaviors of dementia patients as well as give caregivers critical insights through hands-on experience. A long-term dementia diagnoses affects everyone – family, long-term care settings, hospitals, community and friends. It is felt better understanding sets the stage for better care.
Persons may contact Kayla Crowder or Janie Carico for more information on Commonwealth’s memory care unit and related support groups at 276-728-5333. Information on Second Wind Dreams can be found at www.secondwind.org.
“You know when you go in you’re going to come out,” said Susanne Collins. “If I thought I was going to stay that way it’d be awful.”
David Broyles may be reached at 276-779-4013 or on [email protected]