In April, gerontology researcher Anne P. Glass traveled to the Netherlands and witnessed innovative ideas about caring for people who have dementia. They included small, person-centered, home-like facilities; adult day care programs; an apartment complex where assisted living and nursing care practitioners came to the residents; and a unique village where residents who have dementia can walk to a supermarket, restaurant and park in a safe, caregiving environment.
“Afterward I visited a traditional nursing home and was struck by the difference. I thought about how many people (who have dementia) were lying in beds in our own country,” said Glass, Ph.D., associate director of the University of Georgia’s Institute of Gerontology and an associate professor in the school’s department of Health Policy and Management.
“We can’t overestimate the size of this problem,” Glass said. “Ten thousand baby boomers a day are turning 65 and that will continue for 19 years. There aren’t going to be enough caregivers in the future.”
Today, 5.4 million Americans are living with Alzheimer’s disease and that number is expected to trend upward in the next 35 years. When you consider that there’s no known cure and dementia is the leading cause for placing someone in a long-term care setting (such as assisted living facilities or nursing homes), the emotional and financial costs are tremendous.
“When faced with becoming caregivers to a person with dementia, many families don’t know where to turn and think they have to reinvent the wheel,” Glass said. “Actually, there is a fair amount of help out there. We just need to educate and train people better.”
Glass is an adviser to the new Georgia Alzheimer’s and Related Dementias State Plan Task Force, which is gathering recommendations for a blueprint to address dementia and Alzheimer’s care.
“I’m encouraged that we’re being proactive, but changes won’t happen overnight,” she said.
Still, a culture change is underway as research and advocacy are creating more effective models for care. In 2012, a number of dementia care stakeholders (people living with the disease, family members, service providers, health care practitioners, policy makers and researchers) met in Washington, D.C., to form the Dementia Initiative. The group published “Dementia Care: The Quality Chasm,” an industry white paper that calls for a paradigm shift from the traditional medical/disease-centered model (which can be impersonal and fragmented) to a person-centered focus that encompasses a patient’s “bio-psycho-social-spiritual dimensions” as part of treatment. The paper maintains that every person has his or her own meaning of life, authenticity, history, interests, preferences and needs. Patients are not defined by their illness; they continue to experience life at all stages of dementia.
“Increasingly, research shows that 'how’ care is delivered can be critically important to overall success — as important in many ways as 'what’ care is provided…. A growing body of empirical evidence indicates that person-centered practices are more pleasant to experience, help to optimize health and well-being outcomes, and result in higher satisfaction,” the paper states.
Living with memory loss
Autumn Leaves communities have been developing a person-centered approach to dementia care for more than 12 years. Autumn Leaves of Sugarloaf is the company’s first community in Georgia. Two more facilities are scheduled to open next year in Woodstock and Stockbridge.
“There are lots of assisted living, personal care and nursing homes but not many like ours, whose sole purpose, building design, staff training and everyday activities are focused on the needs of people experiencing dementia, Alzheimer’s or memory loss,” said Matthew Summerville, executive director at Autumn Leaves of Sugarloaf. “Because our scope is narrow, we can deliver better care.”
Besides 24-hour care for residents, Autumn Leaves of Sugarloaf offers free community education programs, family support groups, day stays and respite care for caregivers.
“The training of staff that is based on evidence-based research is very important,” Summerville said.
Registered nurses, licensed practice nurses, certified nursing assistants and other staff undergo about 40 hours of initial training and an additional eight hours every quarter. They also take a certified medical assisting course and learn how to manage common situations, dispense medications, administer CPR and keep residents safe during emergencies.
The facility has a home-like environment with rooms divided into four “neighborhoods,” each of them marked by a wall mural that is easy for residents to identify. All residents have access to common dining rooms, game rooms and outdoor courtyards.
One-on-one activities and group programs help residents enjoy hobbies such as cooking or gardening.
“We form an individualized care plan with the family because every individual is different and they’ve all got their own stories,” Summerville said. “A World War II pilot will light up if you show him a book about planes, for instance. They may not remember clearly but they’ve all led interesting and accomplished lives.”
Kathi Cavallo, director of health care at Autumn Leaves of Sugarloaf, says the care plan begins by assessing residents in their homes and creating a profile that the staff will learn.
“We ask families a lot of questions because the more we know about our residents’ former lives, what they like and dislike, and what behaviors to expect, the better we can build relationships and care for them,” said Cavallo, RN.
When she admits one resident, Cavallo is really admitting five or six people because she considers the family an integral part of the care team. She informs them about changes, educates them about disease processes and helps them cope with grief.
“Everyone’s learning curve is different, and when family isn’t involved we step in and become the family,” Cavallo said.
Autumn Leaves communities offer seven life enrichment activities daily, as well as regular religious services, music therapy and monthly events such as a homecoming dance. Staff members ask residents about their memories of dances and help them make wrist corsages.
“This is a happy place,” Cavallo said. “By providing a home environment and trained caregivers, our residents thrive better.”
Cavallo says that working with memory-loss patients is rarely boring because she never knows what personality a resident will present on any given day. An intervention that has worked many times before may not work at all the next time.
“But the rewards are great,” she said.
Although many people see the need to move a family member into a memory-loss community as a negative thing, it’s often positive for that person, Cavallo said. By adjusting medications, improving diet and providing engaging activities, residents may become more alert and healthier.
“I love turning negatives into positives, and it’s gratifying to see families relax when they realize we know what we’re doing.”