“Imagine that you were unable to communicate with the outside world,” challenges Molly Fogel, director of Educational and Social Services at the Alzheimer’s Foundation of America. The Foundation is a nonprofit founded in 2002 by a caregiver whose mother suffered from the disease years ago, when little information was available about it. Initially formed to help support other caregivers, the organization has branched into educating and training other interested individuals and healthcare professionals as well.
Shaped by empathy and aided by technological advances, Fogel and her colleagues now offer a way for people to know what it feels like to live with Alzheimer’s and other dementia-related illnesses in at least a small way — through a recently-released virtual reality (VR) tool. The curious can don a Google headset and earphones and watch and listen to a 90-second video that mimics the sights and sounds of Grand Central Station as it may be experienced by a person in the mid-stages of Alzheimer’s disease. While outfitted, participants are encouraged to spin about in the wheeled chair provided, allowing them to take in the scene in three dimensions.
Grand Central can be dauntingly overstimulating even to the calmest minds on its calmest day. But as represented in the VR video, it’s downright terrifying. Passersby seem alternately distinct and blurry, too close and then distant, their voices garbled or exaggerated. A friendly stranger who offers to help pick up a dropped cane seems somehow menacing. The train timetables are incomprehensible. The lights are too bright, the clamor too much.
What Virtual Reality Can Do
The struggle to find a cure or even slow the symptoms of Alzheimer’s through drug treatments and trials has been slow, expensive — and so far, mostly unsuccessful. But lately, researchers have offered some hope that virtual reality tools may help in diagnosing and even treating the disease.
For now, the Alzheimer’s Foundation is using virtual reality to help educate family members and caregivers. “Our intention is to provide just a snapshot of what those living with dementia may encounter and for participants to briefly experience what it’s like to step inside their shoes — including the visual and spatial disconnect individuals may experience — as well as other sensory impairments,” Fogel says.
She says that technology, and virtual reality in particular, can be valuable in a number of ways: building relationships by allowing people to experience Alzheimer’s symptoms firsthand, fostering patience and better communication between people with Alzheimer’s and their caregivers, improving safety and care plans, serving as a catalyst for conversation and reflection.
Education Is Still Key
While Fogel heralds technology as an intervention for Alzheimer’s care, she says it is more powerful when paired with education — especially because individuals experience the disease differently. To further the goal of education, Fogel describes some typical cognitive symptoms to listening audiences, known colloquially as “The Five As of Alzheimer’s:”
- amnesia — loss or uncertainty in memory;
- apraxia — difficulties in purposeful movement, or the disconnect between the idea of doing a task and actually carrying it out;
- anomia — problems recalling words, names, and numbers;
- aphasia — struggles to produce or interpret speech; and
- agnosia — limitations on the ability to interpret signals received from the five senses.
Understanding these symptoms often enables caregivers to communicate and interact with people who have Alzheimer’s, which can often help to ease frustrations for all involved.
It’s also deeply instructive to drill down a bit and understand the effects Alzheimer’s may have on each of the senses.
Sight. More than 60% of people diagnosed with Alzheimer’s will have a visual decline of some sort: motion blindness in which the person cannot sense movement , or problems with depth perception, color perception, or the ability to see contrast in colors. The various degenerations in sight may also affect the ability get around physically and to recognize people and places.
Hearing. More than half of all people over age 70 have some type of hearing impairment — and the likelihood of having Alzheimer’s also increases substantially at that age. A loss of hearing can frequently lead to social isolation and depression, especially in seniors. And some people with Alzheimer’s may have nearly normal hearing, but become unable to interpret or process what they hear, which can also cause social isolation, disorientation, or over stimulation.
Smell. Now understood to provide the most meaningful and profound connection to the past, smell is often the first sense to be affected by Alzheimer’s — as changes in the brain may also block or distort it.
Taste. Many Alzheimer’s sufferers also begin to have trouble identifying flavors and remembering tastes, even in foods that were their longtime favorites; it is thought that both their olfactory processing and taste buds become less sensitive. For many people, the act of eating itself becomes confusing — or even frightening — an occasion for uncertainty and anxiousness.
Touch. Fine motor skills are often affected, so that a person with Alzheimer’s may become unable to interpret or react to heat, cold, discomfort, or outright pain.
Touring to ‘Educate America’
The Alzheimer’s Foundation conducts a national “Educating America” tour promoting early detection of the disease as well as giving out information about available programs, research, and support; some also include the virtual reality tool. The tours kicked off on March 9, 2018 in Tempe, Arizona, and future tour dates are planned in 16 cities throughout the U.S.
At the tour sites, participants also have the opportunity to participate in a free memory screening designed to help evaluate memory and other thinking skills. The screening makes use of four different tools currently used in testing cognition and various intellectual functions.
They include the:
- General Practitioner Assessment of Cognition (GPCOG) — a brief test that focuses on time orientation, ability to recall, and awareness of current events;
- MINI-COG — which incorporates item recall and simple clock drawing exercises;
- Memory Impairment Screen (MIS) — a card-based test used to help differentiate between those with normal forgetfulness and those who may have memory defects typical of Alzheimer’s onset; and
- Brief Alzheimer’s Screening (BAS) — also based on date and word recall.
The screenings are administered in private settings. Screeners discuss the results with participants confidentially, recommending visits to various professional practitioners if warranted.
For more on the Alzheimer’s Foundation’s educational programs, go to its website or call its hotline at 866-232-8484.