Missing keys, oopsing a credit card payment, searching for a word that’s on the tip of your tongue. Opening a closet and blanking out. “What was I looking for, anyway?”
Memory lapses are a typical part of aging and sometimes a byproduct of our overbooked, overstimulating lives. But when is forgetfulness more than an incidental occurrence — a blip you solve after putting together the pieces?
“With normal aging, you can pause, take a minute and retrace your steps,” says Melissa Zapanta Shelton, executive director of the Alzheimer’s Association Cleveland Area and Greater East Ohio chapters.
Dementia is different, and so is Alzheimer’s, a neurodegenerative disease that can often cause dementia. The terms are not interchangeable.
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“As science has advanced and we know more about people with Alzheimer’s and other dementias, we know what is a normal part of aging and what is not,” says Shelton.
She points to confusion, challenges with following conversations, difficulty completing familiar tasks — memory loss that disrupts daily life.
In Ohio, more than 236,000 people ages 65 and older are living with Alzheimer’s, according to the association’s latest data. An additional 9.1% of people ages 45 and older have subjective cognitive decline, and 414,000 caregivers in the state are supporting loved ones with Alzheimer’s.
The No. 1 risk factor for developing Alzheimer’s or dementia is getting old.
The tandem effect of an aging population and increased awareness of dementia is influencing incidence rates, Shelton says.
Meanwhile, retirement communities like Kendal at Oberlin and Judson are responding in new ways, implementing programs and residences that strike a balance between safety and autonomy, privacy and engagement, purposeful activity and nursing care.
Reimagining Cognitive Care
Across clinical settings and continuum of care communities, there’s a focus on prevention, early detection and innovation, from a “small house” setting on retirement living campuses to virtual reality staff training that puts caregivers in the shoes of someone with dementia.
A Cleveland Clinic brain study involves collecting data from up to 20,000 neurologically healthy participants annually for up to 20 years.
“These discoveries do not happen overnight,” says Kasia Rothenberg, MD, PhD, a geriatric psychiatrist and neuropsychiatrist at Cleveland Clinic Lou Ruvo Center.
The observational study is designed to identify at-risk individuals by pinpointing when changes in the body and brain occur.
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We’ve learned a lot during the last two decades about dementia, Alzheimer’s and neurodegenerative diseases, Rothenberg says.
“Now we can examine the brain and identify the pathology and, to some degree, predict how conditions will change, develop or progress,” Rothenberg says, noting a focus on developing clinical and imaging techniques and biomarkers to capture dementia as early as possible
Jesse Carlock lives at Kendal at Oberlin, and the retired psychologist is part of the community’s neurocognitive education group that facilitates empathy training for residents, aligning with staff dementia education. The idea is to give people tools for understanding and supporting their peers.
Carlock is also participating in the Cleveland Clinic Brain Study.
The study enrolled its first participant in 2022 and continues to enroll individuals who are 50-plus with no known cognitive disorder or neurologically healthy adults ages 20 and older who have a first-degree relative diagnosed with multiple sclerosis.
Carlock’s keen interest stems from personal experience and from interacting with neighbors in the Kendal at Oberlin community. Her late sister lived in a New Jersey care center. Carlock and her wife planned trips there every few months.
“My sister would often have distress reactions and become irritated and not cooperative with activities of daily living, and the staff didn’t know how to calm her down,” she relates, wishing for the type of residence Jameson House provides, housed within Kendal’s Stephens Care Center.
About 10 years ago, Kendal identified a void in the traditional continuum of care model with independent and assisted living plus nursing care.
“We said, there has to be a better way to support people along their continuum of memory care needs or mild cognitive impairment,” says Michele Tarsitano-Amato, director of creative arts therapy and Kendal’s dementia specialist.
A “great deep dive” resulted in the small house concept, an architectural model Judson is also embracing with plans to develop a future secure neighborhood of small houses in its Chagrin Falls South Franklin Circle community.
At Kendal, a wing of the care center was reimagined into a comfortable home environment, leading with an oak front door and into a foyer space, a great room with a fireplace and cozy seating, a country kitchen with an island for casual dining, vistas of the wooded property and a dining room. Residents can see themselves in the home, literally.
They bring artwork from their collections to hang on the walls. Favorite furniture pieces are moved into their bedrooms. Each has a scrapbook with photos and memories they can share with others. The name is Jameson Neighborhood for a reason.
“We did that so people would stop calling it a unit,” Tarsitano-Amato says.
There’s nothing unit-esque about Jameson.
“We’re not ‘housing’ individuals. We are looking at what brings people joy, what is new that we can engage them with and what old skills we can capitalize on,” says Tarsitano-Amato. “How do we make the experience purposeful and meaningful?”
Jameson Neighborhood isn’t for every Kendal at Oberlin resident with a neurodegenerative condition, whether Alzheimer’s or another form of dementia.
“This is for a group that is struggling with structure but can participate,” Tarsitano-Amato says. “They can still make a certain level of choices, but maybe not always safe choices.”
Walking outdoors and tending to plants is a safe endeavor at Jameson Neighborhood. So is exercise, cooking, doing laundry if able and making a cup of tea in the kitchen. A “purposeful” fern indoors may shed its foliage. All the better for providing a sense of homeownership.
Designed to Preserve Dignity
At Judson, Kaleidoscope XR delivers virtual reality dementia sensitivity training. The nonprofit LIFE, for Linking Individuals and Families through Education and Engagement, has used similar programming for caregivers. The organization hosts daily Memory Cafe events at seven locations, five of them in Lorain County in Elyria, Avon Lake and North Ridgeville.
LIFE also facilitates improv comedy training in partnership with The MAD Factory so caregivers can learn to live in the moment.
“Make the best of the situation, go with the flow and learn techniques to step into their world,” says executive director Carole Klingler.
Judson’s community life and care director, who heads up dementia education, says VR training is offered to Judson associates, families and volunteers. When outfitted with the tech, noises are distorted and vision is impaired. Shoe inserts that feel like bunions affect every move and mimic neuropathy,.
“You are asked to go through tasks like you would ask anyone to do with dementia,” Judson’s Jessica Kulczycki says. “All of a sudden, you are in a space in the body of a person who has dementia. It expands empathy training.”
A companion robot in development with Case Western Reserve University will learn routines of those with mild cognitive impairment to offer reminders such as to drink more water and take medications. It doesn’t replace human caregivers but augments services.
“If we see there is a decline, we can assess sooner and put in place interventions,” Kulczycki says.
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