It turns out that almost everybody knows of somebody with dementia, the life-altering loss of cognitive ability commonly associated with, but not exclusive to, Alzheimer’s Disease. For Cheryl Dorman of Santa Clara, that somebody is her 85-year-old mother.
Dorman was one of 96 caregivers who took a 35-minute dementia reality tour January 27, walking in the shoes of a person with dementia. The free tour, sponsored by Pacific Gardens Assisted Senior Living Community, 2384 Pacific Drive, Santa Clara, was booked to capacity, and a second tour is already half filled.
The Alzheimer’s Association (alz.org) tells us that, of the 5.3 million Americans with Alzheimer’s disease, 5.1 million are 65 or older. For these 5.1 million people, dementia may be accompanied by signs of normal aging: diminished vision, loss of hand dexterity, and problems with mobility.
Tour participants garbed up for their 20-minute, hands-on experience by adding prickly insoles to their shoes, making walking painful. They donned bulky gloves, glasses that limited vision and headsets that piped a constant garble of distracting sounds into their ears—kids playing, sirens, people talking at a party.
Via their headsets, each participant was given three different sets of personal and household tasks to accomplish, with about five minutes between each set of tasks. The idea was to simulate the experience of an older person with dementia trying to do everyday activities.
Dorman’s tasks included finding, putting on, and buttoning a shirt and setting a table for four people.”My fingers were fumbling and I was ready to cry while I was trying to put on the shirt because my mom is the one with dementia and that is what she’s going through. Also, I didn’t know she was hearing things; that was driving me crazy,” says Dorman. “It was just a few minutes; I can’t imagine this all the time. Everyone who has a family member with dementia should do this [tour].”
“The sound distractions made remembering instructions fly out the window,” says a man whose girlfriend has dementia.”The tour made me both more empathetic and helped my understanding of the basic problems underlying dementia,” he says after the 15-minute debriefing that synthesized the hands-on experience.
According to Rick Carson, who developed the tour and founded Immersion Reality Education (dementiatour.com), hearing voices and sounds and seeing things that are not there are typical dementia experiences. The best thing a caregiver can do is “play in their world.”
Listen to the person and try to understand their world. Then use their reality to resolve the issue. If the person with dementia sees a frightening person who is not really there, do not tell the person they are imaging things. Instead, verbally and physically get rid of the frightening person.
Nancy Wagner’s mom is in Pacific Garden’s Memory Care unit, where the tour took place. “Now I understand as best I can what it feels like to have dementia. I learned how overstimulation can be overwhelming and how to handle and communicate with my mom in a more effective way,” says Wagner. For example, a task needs to be broken down into simple steps given one at a time.
Practical information for caregivers was available from the health service specialists who co-sponsored the tour: Care Source Registry, Senior Season Home Referrals and Resources, Vitas Hospice Care, Dementia Care Coaching, Care More, Select Therapies, and Gregory L. Belcher, M.D.
“This tour is something we can give back to benefit the community. A lot of people just don’t understand what the needs of a person with dementia are and how a person with dementia perceives life vs. the rest of us,” says Scott Machado with Pacific Gardens.
Phone Pacific Gardens (408/985-5252) to sign up for the next dementia reality tour. The date is yet to be determined.
