By Kimberley Beauchamp
Fear. Grief. Confusion. Frustration. Loneliness. These are just a few of many painful emotions that a person facing dementia might feel day to day. Short of living through dementia ourselves, how can we ever begin to comprehend the feelings that our loved one experiences? We might research and read about Alzheimer’s disease and other dementias in books or online, or talk to the doctors and the experts to understand the physical and cognitive symptoms. But the Best Friends Approach encourages us to go a step further and truly picture ourselves in the shoes of a person with dementia—to imagine what it is like to lose our fondest memories, our independence, our sense of self.
In the spirit of the Best Friends Approach comes a new Facebook App called FaceDementia, an innovative online experience that simulates the progression of dementia, providing an interactive glimpse into the frightening world of memory loss and cognitive decline. Developed by Alzheimer’s Research UK, The FaceDementia app pretends to hijack a person’s Facebook page, deleting or scrambling personal profile information, daily updates, and photographs to mimic short term memory loss, disorientation, and confusion.
Alzheimer’s Research UK developed FaceDementia based on the premise that Facebook serves as a kind of personal
diary of daily events, allowing online users to document and preserve important memories and to gather family and friends close. As the FaceDementia app infiltrates a person’s Facebook profile, online users get a more visceral understanding of how dementia can ravage the mind and strip away the familiar. Imagine family and friends becoming unrecognizable, events of the day disappearing completely from memory, past and present blurring together as time becomes distorted. FaceDementia simulates these experiences through the Facebook profile— online family members and friends suddenly become strangers; daily updates vanish, photos capturing beloved memories disappear (The person’s actual Facebook page remains intact and is not damaged; the app uses an overlay to simulate the symptoms of dementia without ever permanently affecting personal online information). As they experience the app, users encounter short video clips where people who have been affected by dementia speak out about how their lives, or loved ones’ lives, have been impacted by irreversible real-life symptoms.
It may be frightening to comprehend what dementia might be like for a person that we care about. But an exercise in empathy, like FaceDementia, can strengthen us as care partners and transform us into a “Best Friend.” In their book The Best Friends Approach to Alzheimer’s Care, Virginia Bell and David Troxel suggest writing down ten favorite activities, passions, and pastimes on separate pieces of paper, then throwing each away one by one as a representation of the tremendous loss a person with dementia experiences. When we imagine what a person with dementia might be going through, we can understand “the why” behind otherwise confusing or challenging behaviors.
Whether we increase our awareness and gain perspective online through social media, or simply meditate about how we might feel if we were in the person’s situation, empathy helps us to better communicate with our Best Friend, anticipate his or her needs, and face dementia together, one step at a time.