{"id":11256,"date":"2018-08-23T01:55:23","date_gmt":"2018-08-23T01:55:23","guid":{"rendered":"https:\/\/magazines.uthscsa.edu\/mission\/?p=11256"},"modified":"2018-08-30T21:32:11","modified_gmt":"2018-08-30T21:32:11","slug":"dementia","status":"publish","type":"post","link":"https:\/\/magazines.uthscsa.edu\/mission-old\/dementia\/","title":{"rendered":"Dementia"},"content":{"rendered":"

By<\/em> Joe Michael Feist<\/strong><\/p>\n

Stabbing pains shot through my feet with every step, every turn. My vision was chalky and distorted. I ran into objects, couldn\u2019t pick up a fork or knife without a struggle, and heard nothing but a god-awful, buzzing white noise. The small apartment was vaguely familiar yet foreign. Disoriented and confused, I kept trying to complete simple tasks I had been assigned, but couldn\u2019t even remember the instructions. I felt slightly stupid and strangely lost inside what used to be my body. And under my breath, or so I thought, I cursed my predicament quite freely.<\/p>\n

Most of all, for six excruciating minutes, I just wanted it to be over.\u00a0<\/span><\/p>\n

\"story

The Virtual Dementia Tour offers caregivers enhanced empathy for those struggling with memory loss.<\/p><\/div>\n

\n

On this sunny spring day, I felt fine, but in a matter of minutes was about to find out what it would be like to lose my mind. The Virtual Dementia Tour is a controlled simulation of dementia symptoms and part of the overall Caring for the Caregivers program run by the School of Nursing. The tour aims to give caregivers a greater understanding of dementia and an enhanced sense of empathy for those struggling with it.\u00a0<\/span><\/p>\n

Dementia is the torturous unraveling of memory and brain function. It occurs most often in those of an advanced age, and so it\u2019s often accompanied by other symptoms such as vision and hearing loss, neuropathy\u2014which causes numbness or weakness in the arms or legs\u2014and loss of dexterity. Because of the cognitive decline associated with the disease, those with dementia are often unable to communicate or explain their feelings and behaviors.\u00a0<\/span><\/p>\n

It can be a nightmare for caregivers as well, most of whom are family members with little or no training or understanding of the illness\u2014or how to cope with an uncommunicative and seemingly uncooperative patient.<\/p>\n

The Virtual Dementia Tour, developed by Atlanta-based Second Wind Dreams and licensed to UT Health San Antonio, is meant to give caregivers \u201ca glimpse into the world of dementia,\u201d said Deborah James, M.S.N., RN, a clinical assistant professor in the School of Nursing and director of the dementia tour. And, she added, a better understanding of the challenges dementia patients face can only lead to better caregiving.\u00a0<\/span><\/p>\n

This is especially critical in light of some startling facts. Age is the greatest risk factor for developing dementia, and the number of Americans over 65 is expected to double by 2060. In Texas, according to the Department of State Health Services, a new person develops Alzheimer\u2019s disease every 65 seconds, and current projections indicate that this rate will increase to one new case every 33 seconds by 2050.\u00a0<\/span><\/p>\n

Alzheimer\u2019s disease, the most common form of dementia, affects an estimated 5.7 million people in the U.S.; 380,000 are Texans. The disease disproportionately affects women, African Americans and Hispanics.<\/p>\n

\"shoe

The dementia tour is meant to give caregivers a glimpse into the world of dementia and the confusion that envelops patients. Participants are outfitted with shoe inserts that simulate neuropathy, which causes numbness or weakness in the legs.<\/p><\/div>\n

For the tour, which lasts only six minutes, I was outfitted with inserts in my shoes that have probes that dig into the feet. \u201cThat\u2019s to simulate neuropathy or diabetic neuropathy, like pins and needles in your feet,\u201d James explained. Then a padded glove was placed on my dominant hand to impede dexterity. Thick glasses distorted my vision and simulated glaucoma and other vision problems. Headphones with white noise caused hearing loss and added to the general confusion.<\/p>\n

Uncomfortable and a bit bewildered, I was given five simple tasks, which I was to perform in a room furnished like a small apartment. But like many who take the tour, the white noise and the disorientation meant that I didn\u2019t clearly understand the verbal instructions or recall them later. I was told to \u201cput the coffee in the refrigerator,\u201d but only heard the words \u201ccoffee\u201d and \u201crefrigerator.\u201d I was asked to \u201cbuckle the belt,\u201d but only heard \u201cbelt.\u201d Of the tasks assigned, I completed none.<\/p>\n

\u201cAll of the things being simulated are very common in those with dementia or those with Alzheimer\u2019s,\u201d James said.<\/p>\n

\u00a0<\/span>My tour was a marathon of frustration, pain, embarrassment and defeat. I fearfully thought, \u201cIf this is what dementia is like, God spare me.\u201d That emotion is common, according to the Centers for Disease Control and Prevention, which found that Americans fear losing their mental functions twice as much as they fear losing their physical abilities.<\/p>\n

After the tours, which are closely monitored, James debriefs the participants so that they more fully understand what transpired and how it might relate to their caregiving.<\/p>\n

The experience, the sudden realization of what dementia feels like, can be life changing for the caregiver. And raw emotions sometimes overwhelm the tour participant, James explained.<\/p>\n

\u201cOne man said, \u2018I feel so ashamed,\u2019\u201d she recalled. \u201cHe said, \u2018I try to protect my wife, but I never realized that it hurts so bad just to get your damn shoes on. I didn\u2019t know she was in that kind of discomfort. And I never thought that she couldn\u2019t hear me.\u2019\u201d\u00a0<\/span><\/p>\n

Like other caregivers, the man thought his wife simply didn\u2019t want to cooperate.<\/p>\n

Sheran Rivette, who works part time in the Caring for the Caregiver program, was the full-time caregiver for her husband, who had Alzheimer\u2019s disease, for six years before his death in February 2017. She now cares one day a week for a man with Alzheimer\u2019s, giving his wife a much-needed respite.\u00a0<\/span><\/p>\n

She recently experienced the dementia tour, but, for her late husband\u2019s sake, wishes she had had the chance to do it years ago.<\/p>\n

\u201cAt first, after doing the tour,\u201d she said, \u201cI had sadness because I had not been as sensitive in understanding his conditions and his actions as I could have been. Should have been.\u201d Her voice trailed off. \u201cWish I had been,\u201d she added softly.<\/p>\n

Almost worse than the disease itself are the moments of clarity, in which the person with dementia realizes how much they\u2019ve lost.<\/p>\n

\u201cI think the person is disappointed when they can\u2019t complete simple tasks,\u201d Rivette said. \u201cI think they\u2019re embarrassed because they feel foolish, they feel stupid. My husband often said, \u2018I\u2019m just stupid. I don\u2019t know anything.\u2019\u201d<\/p>\n

Now, she added, with the man she cares for weekly, she\u2019s more patient, more tolerant, more willing to try different approaches to break through the fog of the disease.<\/p>\n

\u201cI would encourage every caregiver to take this tour,\u201d Rivette said. \u201cTo empathize is different than to sympathize. I believe empathy is huge. We need to put ourselves in other people\u2019s shoes.\u201d<\/p>\n

By far, family members provide most of the care for loved ones with dementia or Alzheimer\u2019s disease, said nursing professor Carole White, Ph.D., RN, who directs the Caring for the Caregiver program. In 2017, an estimated 15 million Americans provided 18 billion hours of unpaid care for family members and friends with Alzheimer\u2019s and other dementias.<\/p>\n

\"Story

Tour participants are outfitted with a padded glove to impede dexterity, thick glasses to distort vision and headphones to simulate hearing loss.<\/p><\/div>\n

Often, Dr. White said, it comes at \u201cgreat personal cost to their physical health, their emotional health, their social and financial health.\u201d<\/p>\n

That\u2019s why the comprehensive Caring for the Caregiver program that offers education, skills training, research and community engagement is so needed, she said, especially in light of the coming \u201ctsunami\u201d of people with Alzheimer\u2019s disease and other dementias.\u00a0<\/span><\/p>\n

After my dementia tour, as I massaged my aching feet, regained my balance, was told how much I swore and was reminded of how I didn\u2019t really do the things I was asked to do, James added a sobering shot of reality.<\/p>\n

\u201cRemember,\u201d she said. \u201cThis was only six minutes of your time. It\u2019s every minute of some people\u2019s time.\u201d<\/p>\n

The School of Nursing and the Glenn Biggs Institute for Alzheimer\u2019s and Neurodegenerative Diseases work together to support the health and well-being of people with dementia and their family members. To learn more about the Caring for the Caregiver program and the Virtual Dementia Tour, visit UTcaregivers.org, call (210) 450-8487 or email masoud@uthscsa.edu.<\/i><\/p>\n","protected":false},"excerpt":{"rendered":"

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