“Dementia used to be viewed as a psychological problem, a mental illness. There was a stigma associated. Now, we know it’s an organic problem related to cell death in the brain. It’s a medical condition,” said P.K. Beville, founder of Second Wind Dreams, at the Environments for Aging conference in Las Vegas. Dementia, which includes diseases like Alzheimer’s, some forms of Parkinson’s, Lewy body disorders, and others, is now called a neuro-cognitive disorder. It affects more than 5 million Americans and their families.
Throughout the conference, perhaps the major focus was how to orchestrate a shift to more empathetic or patient-centric care for those with neuro-cognitive disorders. Just like with autism, it’s now understood there is a spectrum of neuro-cognitive disorders. One person with the disorder is really one person with the disorder. Designers, physicians, and researchers are partnering to better understand what it’s like to have a neuro-cognitive disorder and then create more sensitive processes and empathetic spaces that can help alleviate the pain these patients experience while institutionalized in memory-care facilities.
With these disorders, there is a loss of cognitive abilities. Our ability to hear, speak, read, and understand come from different parts of our brain. If there is cell death in these areas, then forging understanding connections with others becomes much more challenging. For many of these patients, long-term memory may be intact, but not short-term episodic memory. Also, semantic memory, which deals with abstract concepts, and procedural memory, which helps people remember how to get from point A to B, may be damaged. With the loss of abstract memory, “the goals or intentions of life is lost,” explained Terry Zborowsky, a researcher with HGA architects and engineers in one session, which is why they need “so many cues from the environment.” The loss of procedural memory means those care environments become incredibly confusing, so designers must be really thoughtful to make them more legible.
In her keynote, P.K. Beville said she wants caregivers to better understand why patients with neuro-cognitive disorders behave the way they do. When this is achieved, we can create spaces to better meet their needs. For example, Alzheimers patients in advanced stages “don’t get warning signals when they have to go to the bathroom.” All of the sudden it just comes on and they have to go. If the bathroom is far away, they may miss it and then be labeled incontinent and placed in briefs. “That’s a horrible threat to their dignity. How can we get them to their bathroom faster?” Some ideas: make the bathrooms more easily accessible via hallways, instead of hiding them, and put them in direct line of sight from beds.
Patients with neuro-cognitive disorders often have macular degeneration, which will put a large black spot in the middle of their vision. Their peripheral vision will also be significantly degraded. Their field of view is then limited to just a few feet, which is why they often look down to see where they are going. Beville said, knowing this, “it’s really silly that caregivers are still sitting to the sides of patients when they feed them. Imagine this fork flying out of space into your mouth.” When a patient balks or refuse to eat, they are then labeled difficult and that behavior gets “charted.” It makes much more sense to sit directly in front of the patient and create dining spaces that enable this.
In neuro-cognitive patients, degeneration of the reticular activating system is “what’s causing all the mess. It removes what’s important, causing a loss of focus. When this area of the brain is damaged, the brain picks up all sensory input, relevant or irrelevant.” These patients will hear everything — a door being slammed, a vacuum cleaner, a TV, and even the HVAC system. A dog barking or baby crying will be incredibly painful. When these patients are overwhelmed, they will begin to rock or become agitated. It’s important that memory care facilities then eliminate all sounds that can cause an annoyance. “The dining room can become a cacophony of sound. No wonder the residents don’t want to eat.”
Beville has created an amazing virtual reality tour that demonstrates what it’s like to have a neuro-cognitive disorder like Alzheimer’s. Working with leading medical professionals, researchers at Georgia Tech, and patients, she modeled the effects using goggles, which layers the effects of macular degeneration on whatever you are looking at; gloves that reduce fine motor skills; and headphones that mimic the aural sensory overload these patients can experience. Some two million caregivers in senior facilities have taken the tour.
At the conference, she modeled the newest iteration of the tour using Samsung Gear virtual reality (VR) headsets, instead of goggles, which augment a user’s field of view. The woman who tested it said it was a “terrifying experience.” She said she had “no perception of depth or peripheral vision; it was very hard to hear. I was very, very anxious.”
Studying the responses of the caregivers who have taken the tour, Beville found they exhibit the same behavior as those with Alzheimer’s and other neuro-cognitive disorders. They mumbled or hummed in an attempt to focus and block out the extraneous noises. They were agitated, wandered, rummaged, made negative statements that indicated they felt overwhelmed or depressed. Just 8-10 minutes in the headset caused some to have “strange or bizarre behavior.” Now imagine someone struggling with this condition for years.
Through the tours, Beville found older patients with this condition need “three times the light to see than younger people.” So facilities and their landscapes need to be well lit. The reaction time of the pupil is also delayed, so any changes in lighting causes major issues and should be avoided. Noise needs to be reduced to eliminate distractions. And patients want clear guidance — “something to do” — to help them focus.
After taking the tour, more caregivers agreed with the statement that neuro-cognitive disorder patients “don’t get the care they need.” The tours then help facilities begin to institute performance-based systems to improve quality of care. After taking the VR tour, caregivers say they will be “more patient and understanding with patients, will take more time and provide more attention, and communicate better.” Beville and her group are measuring the changes before and after sensitivity training to demonstrate improvements, which can be measured in adaptive behaviors among patients (engagement, communication, wayfinding, and social integration) and maladaptive behaviors (aggression, confusion, disorientation).
In another session, we heard how to take empathetic design to the next level. Architect Alana Carter, with HGA architects and engineers, explained how she checked herself into a healthcare facility she was redesigning, pretending to be a stroke victim with degraded capabilities on her entire left side. She was fed, washed, and helped in the bathroom. She called the experience “extremely humbling,” but it gave her insights into what needed to be done better from a patient point of view.
Carter and her colleague Zborowsky called for “walking in the footsteps” of patients first, using a comprehensive design methodology to uncover design solutions that will improve environments for aging. Their teams put GPS tracking devices on staff and patients and apply sensors that generate heat maps to understand the flow and popularity of areas in a facility. This kind of analysis can reduce inefficiencies in layout and help discover what features patients feel most comfortable around. Using VR headsets, HGA then prototypes Revit designs of new spaces in real-time, working with caregivers to optimize layouts and features. Finally, they test implemented designs through comprehensive pre- and post-occupancy reviews.
Carter concluded: “We need to move design for seniors out of the care facilities and into museums, galleries, movie theaters, and the home. We need to bring empathetic design to all places. We need to design for the outliers.”