Confronting the challenges
It’s a force to be reckoned with. Alzheimer’s disease and related dementias (ADRD) are debilitating conditions that impair memory, interfere with thought processes, and limit day-to-day functioning. As the disease continues to surge—affecting more than five millionAmericans and as many as 16 million by 2050—the nation is seeking new ways to care for people with ADRD. One leading approach is focusing not on losses but on remaining potential.
“Fear about getting Alzheimer’s disease is pervasive,” says Kim Warchol, an occupational therapist and president and founder of Dementia Care Specialists, a nationwide dementia training and consulting company. “Why is the disease so scary? Because of the belief we continue to hold that if you’re diagnosed with dementia, you’re on your way down a long road of suffering.
“Although this perspective is gradually changing, it’s still there in part because of the way we’ve traditionally cared for people with the disease. As soon as a person experiences memory challenges, we confine them to a world of losses—what they can’t do anymore. Over time, we begin to use labels like ‘wanderer,’ ‘rummager,’ or ‘feeder.’ Suffering is born out of this negativity.”
Facing the realities
For healthcare stakeholders—providers, payors, and patients and their families—the challenges of ADRD are steep. Seniors with dementia are hospitalized three times more often than seniors without dementia and experience a greater reduction in quality of life. They may need intensive long-term services and support. Psychotropic medications are often overused to control behavior issues. Many caregivers eventually burn out and leave their profession.
ADRD is also taking a huge financial toll. At an annual cost of more than $200 billion, it is the most expensive illness in America today.
According to Warchol, the devastating effects of the disease are made even more so by mistaken perception.
Flipping the perception
The result can be such problems as depression, physical weakness, negative behavior expressions, more hospitalizations, and eventually, failure to thrive.
“Yet if we come from an empowered, person-centered point of view, focusing not exclusively on the disease, but on the person first and his or her remaining potential, we can significantly change the future for this individual and the downward spiral of events.”
Warchol notes that forward-thinking memory care providers are taking what she calls a “strength-based approach” to ADRD, training staff to highlight residents’ cognitive abilities. For example, the strength-based program was introduced two years ago to staff at Pathways Memory Care at Villa Toscana in Houston, Texas, one of seven memory care communities operated by StoneGate Senior Living. Since then, staff members have received specialized training in tailoring care to individuals and helping residents with dementia do as much as they can on their own.
Following the developmental stages
A key theory that’s helping to change the perception of ADRD is retrogenesis, meaning “back to birth.” Warchol explains this as the concept that the brain of a person with Alzheimer’s disease deteriorates in the reverse order that the brain developed from birth. “Cognitive skills acquired last are the first to go, and the ones attained first are the last to leave.
“Functional cognitive capacity defined in the stages of dementia can be equated to capacity within developmental ages. Someone at the end of life with Alzheimer’s has the same cognitive abilities and functional capabilities as an infant. Yet we need to remember that regardless of their stage of cognitive development, children live a quality life. Even an infant has quality of life, because we celebrate who they are and what they can do—and we accommodate for what they can’t do. We create many meaningful moments, not despair.
“That’s the way we need to see people with dementia. True, their brains are not fully functional, but that person is still there. If we as care partners can learn to adjust our perceptions and celebrate who that person is, those living with ADRD can have a quality life.”