Florida Caregivers Participate in Dementia ‘Reality’ Experience

Nurses get first-hand look into lives of dementia patients

Cleveland Clinic Indian River Hospital is nestled in beautiful Vero Beach, Florida, which also happens to be home to thousands of retirees. In fact, in Indian River County, 33% of residents are over the age of 65. 

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Margaret O’Rourke, BSN, RN, a Medical-Surgical Clinical Educator at Cleveland Clinic Indian River says with Vero Beach being a retirement community, Indian River Hospital provides care for a predominantly older patient population.

“Many Indian River patients have dementia, Alzheimer’s disease or other memory-loss disorders,” O’Rourke says. “Our caregivers take care of patients with these disorders every day.” 

TJ (Gary) Todd, a nurse on the hospital’s 4 North medical unit, a 24-room unit, agrees. “I care for five to six patients daily and I see at least one patient per day with dementia-like conditions – if I don’t, it’s surprising.” 

Recently, through a partnership with the Alzheimer and Parkinson Association of Indian River County, O’Rourke planned and organized a dementia ‘reality’ experience for Indian River nurses and other caregivers. 

Led by the association, the learning exercise was designed to allow Indian River medical-surgical caregivers the opportunity to experience some of the challenges that individuals with dementia experience on a daily basis. 

“The association in Indian River is very passionate about educating the community on dementia, Parkinson’s and memory problems. It’s extremely important to have the correct tools in place for both patients and caregivers,” says O’Rourke.

Limiting sense of touch, sight and hearing

The 2-part experience was set up in a 4th floor classroom, which is where most of the hospital’s medical-surgical nursing units are located. 

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After a brief overview from association staff, participants were instructed to put on a pair of gloves, vision-narrowing eyeglasses, and a headset that continually played a recording of a radio-type talk show with other sounds interjected, such as a siren, a doorbell ringing and a dog barking. 

Participants were then given five instructions – which O’Rourke says were difficult to hear and understand over the sounds in the headphones. They had five minutes to complete the instructions, which included assignments like:

  1. Find the black shirt, button two buttons, and fold the shirt.
  2. Tie the shoes.
  3. Fold four pillowcases.
  4. Button three buttons on the white shirt and hang it up.
  5. Write the names of three family members on the notepad.

Following, participants entered the debriefing part of the exercise. O’Rourke says when the staff asked participants what the experience was like, the most common responses were: “I was frustrated,” “I couldn’t hear the instructions,” and “I couldn’t remember the tasks.” All of which constitute very real feelings those with dementia or Alzheimer’s experience every day.

“Most of the time with conditions like dementia, you primarily think of patients being confused,” says Todd. “But, through this exercise, by having your vision, hearing and tactile senses altered, you realize how much of a patient’s sensory experience can also be affected. For example, not being able to feel with the same level of dexterity brought a whole new level to the experience. You really got a better understanding of how confusing and overwhelming things like buttoning a shirt can be for these patients.”

Creating a positive emotional state for patients

During the debriefing, participants discussed various emotional states memory-loss patients can experience, and how caregivers can help transform potentially negative states of emotion to positive ones.

O’Rourke says the importance of providing patients with positive reinforcement was a key message of the exercise.

“Something I often see is a patient who feels anxious because they think they are missing someone or something, like a loved one who isn’t there anymore or the patient thinks they are supposed to be at work,” Todd says. “The trick is not to focus on the question the patient is asking or even redirect them, but to replace their anxiety with assurance.”

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Todd gave an example of a patient who was looking for his wife. He says that as a caregiver you shouldn’t say something like, “don’t worry, we’ll see your wife later,” but rather you should say, “your wife will be back, she’s just at the store right now.” He said the debriefing stressed that patients are able to make more sense of caregiver responses when there is reasoning behind the response.

Todd also said that he could immediately take what he learned in the experience and apply it to his daily nursing practice. 

“It’s so important to understand that there’s more than memory-loss occurring with these patients, it’s also sensory and emotional for them,” he adds.

Enhancing understanding and empathy

Association staff took two participants through the caregiver dementia exercise at a time, each group lasting about 20 minutes. A total of roughly 30 caregivers participated throughout the day, most of whom were nurses and nursing assistants, as well as nurse managers and nurse educators. 

O’Rourke says the learning exercise enhanced caregiver understanding, empathy and compassion for patients and families grappling with Alzheimer’s disease and related memory disorders.

“We know that dementia patients can become confused even in their own homes so in the hospital setting, it’s even more frightening for them,” O’Rourke says. “For caregivers, having this increased awareness and understanding helps provide better service and care for those touched by dementia.”