To Allen Curtis, the signs of dementia in his father were subtle … until the day they weren’t.
“My father had always been a farmer and very common-sense,” Curtis says. “But when he lost his truck on his own farm, I knew we were in trouble.”
The elder Mr. Curtis’ behavior had been “of” for a while. The family chalked it up to age and maybe a bit of depression.
But when it became increasingly odd and unpredictable, he was diagnosed with Alzheimer’s disease.
Now Mr. Curtis receives round-the-clock care at Hickory Hills Alzheimer’s Special Care Center, an all-inclusive “memory care” facility in Hendersonville where caregivers are intimately involved with every aspect of 50 residents’ lives, and where family members are actively involved in care plans.
It’s one of a growing number of residential facilities designed to accommodate the needs of people with Alzheimer’s disease and other dementias.
Memory care differs from assisted living. While both offer rooms, meal services, and programming, people with dementia need personalized care, therapeutic programming, and a higher level of staffing, care, and security.
The costs of memory care can be substantial because of the level of caregiving: in the latter stages, many sufferers can no longer perform basic functions like eating for themselves.
But for Allen Curtis, it’s worth it.
After the diagnosis, Curtis brought his father to live with him. But he and his wife quickly realized they were in over their heads. It was hard to keep a routine, and the elder Mr. Curtis would wander, getting up at 2 a.m. sometimes fully-dressed and “ready for school.”
“It progressed so fast, it didn’t take long to realize that we couldn’t keep him contained,” Curtis acknowledges.
“People with Alzheimer’s are very routine-oriented and it’s hard for someone who works and has a family to keep the same routine for that person all the time.
“My wife and I realized when he was living with us that we couldn’t keep that routine, even with caregivers coming in.”
Memory care residences offer person-centered care that is based on an individual’s personal history and preferences. Residents are not all woken up, bathed, and fed on the same strict schedule but according to their habit.
Staff members know personal details about the residents’ lives, such as the work they used to practice and favorite songs, so they can interact on a more intimate level and increase engagement with the resident. The focus is on extending quality of life by focusing on the person’s remaining abilities.
That’s the idea behind Abe’s Garden, an Alzheimer’s and Memory Care Center of Excellence founded by Michael Shmerling, a prominent Nashville businessman whose father suffered with the disease.
It is housed within Park Manor, a residential complex near Belle Meade, and has a strategic alliance with Vanderbilt University’s Center for Quality Aging.
It is meant to be a “living, breathing laboratory” for implementing best practices in dementia care, to serve as a national model to be replicated in other communities, and to be a resource for disseminating the latest research on evidence-based dementia care.
“There are good things happening in a lot of places but there was no comprehensive place doing all of it,” says Beth Zeitlin, director of marketing and development.
“That’s why we’re doing what we’re doing.”
The Abe’s Garden community was developed by specialists in the fields of geriatrics, aging design, and lighting, and continually partners with institutions such as Northwestern, Brown, and Emory universities to test and implement new solutions for dementia care.
Its 42 residents live in one of three unique themed “households” – arts and lifelong learning, nature, or music and movement – according to interest. On a recent day in the music household, a guitarist led residents in a singalong accompanied by hand motions. In the arts household, a woman displayed photographs and asked residents what feelings they evoked.
Birds chirped in the nature household, and a good-natured black Labrador named Dixi wandered the hall, looking for someone to toss her ball. Plenty of natural light, soothing colors, and the smell of food wafting from open kitchens created a homey atmosphere.
The households open to a central courtyard that has outdoor grills, a nature discovery area and a multilevel fountain to connect residents with nature. On any given day, residents might be seen gardening, exercising, painting or simply sitting in the sun.
But Abe’s Garden is built around technology and intentional design. In fact, everything about Abe’s Garden is evidence-based.
The indoor lighting was designed by Rensselaer Polytechnic University researchers to improve the comfort, safety, and emotional well-being of residents – brightening to stimulate engagement or darkening to calm an agitated resident.
The furniture in each resident’s suite is specifically designed for the needs of people with dementia.
Weight-calibrated glider chairs automatically lock in place when a person starts to get up, beds have elegant sides that prevent falls, and a “cueing wardrobe” directs attention to compartments with daily clothing – while also providing a drawer that allows the resident to “rummage” as people Alzheimer’s often do.
The activities program is based on the Hearthstone approach, a model developed by John Zeisel, a noted expert in dementia and environmental design. It focuses on a resident’s personality and abilities, and residents engage at their level of physical and cognitive health.
“We take the more positive approach – how can we improve their life and take advantage of their remaining capabilities?” Zeitlin explains.
Since opening two years ago, Abe’s Garden has stayed at capacity. When its most famous resident, Glen Campbell, arrived he could still play guitar and have dinner every night with his wife, who preserved his privacy. After he died, Kim Campbell began to speak more openly about care giving and Abe’s Garden.
That has generated interest from national media, and Zeitlin says the organization is often asked about franchising and expanding the Abe’s Garden model to other sites. But she points out the focus is on disseminating the latest research on evidence-based care so others can replicate it.
Abe’s Garden is now a national leader in training in Alzheimer’s care. It has a significant training and outreach program, hosting scores of groups from around the country and presenting at national conferences.
And a series of high-quality care giving videos featuring real Alzheimer’s sufferers have been viewed tens of thousands of times on the Abe’s Garden website (www.abesgarden.org).
“We want everybody else to grow and succeed and be a resource for them,” Zeitlin says. “We’re open to collaborating with anyone we feel will advance the mission of Alzheimer’s care.”
Creating meaningful moments
Memory care can be expensive. Prices start at around $4,000 a month while Abe’s Garden, a high-end residence, costs $7,070 to $7,270 per month. Medicare does not cover assisted living, and people applying for TennCare (Tennessee’s Medicaid program) must meet strict medical and financial criteria, says Debra King, elder care coordinator with Takacs McGinnis Elder Care Law of Hendersonville.
In most cases, memory care is private pay, unless the person with dementia has a long-term care policy that covers it or Veterans Administration benefits.
“The higher-income people can afford it but people who are mid-income, that’s where it becomes more of a challenge because you don’t know how long you’re going to have to pay for it,” King points out.
“How long are you going to live with this dementia? What happens when you run out of money? We really want to get the word out that there are things that you can do to plan for your long-term care needs, especially when you get that diagnosis.”
There are currently 120,000 memory care units nationwide, about double the number in 2008, according to the National Investment Center for Seniors Housing and Care, which tracks the business. With at least 14 million Americans projected to develop Alzheimer’s by 2050, demand will grow until an effective treatment is found.
Tiffany Cloud-Mann of the Alzheimer’s Association says people with the means have no problem finding a suitable bed in a residence. For others, more adult day care programs need to be developed.
“It usually is a great option for someone needing more help with their loved one because it is typically cheaper than having someone coming in the home and provide health care,” she explains. “We could benefit from more of those.”
Zeitlin agrees. Abe’s Garden is working to expand enrollment in its adult day center, called “The Club,” and its community group for early-stage Alzheimer’s sufferers.
“Community-based services is the future of Alzheimer’s care because we can’t build our way out of this,” she says.
“Something you can’t fix’’
Curtis says his father’s disease has progressed quickly over the past year. Now 81, he cannot walk and requires feeding assistance. He no longer recognizes his son. But he seems happy and secure.
“A lot of times in these patients, you can see the fear in their eyes,” Curtis adds.
“My father does not have that. He’s doing very, very well here. He’s always smiling, he’s always clean, he is safe, and he has not been injured since he’s been here.”
Curtis has come to terms with the difficult role reversal of becoming caregiver to his own father. He now counsels other families on how to cope with their feelings, and how to let the daily caregivers do their jobs.
For some, he adds, letting go is the hardest part.
“It’s a tough transition because you want to fix things but you can’t. You can’t control it and you can’t make them know who you are,” Curtis acknowledges.
“It’s the hardest thing but having people that can give you support, and talking to the caregivers that are with him on a daily basis, listening to them and understanding what they do helps you get by and not feel guilty.
“The routine that they have here and the love that you witness, the way they treat him day in and day out … That’s the reason my father is here and he will remain here until he goes on to see his Lord.”