When a loved one requires memory care
For Marylander Larry Barrett, the agonizing decision to find a memory care community for his wife, Martha, began more than 10 years ago. That’s when Larry first noticed that something was going on with Martha, then 60, a lawyer.
She’d forget the name of a person she met the night before. On a trip to Louisville, Ky., where she grew up, she forgot the way to her childhood home.
Larry persuaded Martha in 2010 to see a neurologist, who diagnosed her with mild cognitive impairment. In the years that followed, Martha’s condition progressed to Alzheimer’s.
Larry tried to care for her himself, but things got complicated. He sold their house and moved them into a nearby apartment.
But Martha began to wander. Once, when Larry was attending a support group for spouses of people with dementia, the apartment building’s front desk staff called to say they had found Martha disoriented.
“It was reaching the point where she couldn’t be appropriately cared for at home,” said Larry. After a yearlong search, he found a nearby memory care community for Martha in 2017. The process took an emotional toll.
“It’s one of the hardest decisions you can make in your life,” he said.
Many family members of people with dementia face the same decision Larry Barrett did. They want a spouse or parent to get 24-hour, supportive care but also still enjoy some quality of life.
It isn’t simple to find that kind of care, whether in a nursing home, assisted living, a continuing-care retirement community or a memory care unit.
Loved ones also sometimes worry about stereotypes of long-term care, such as an elderly parent being left alone all day. These fears can induce guilt in family members.
But many long-term care communities for people with dementia are changing their culture and practices to be “person centered” — focusing on the individual needs of residents and recognizing they still require meaning and purpose in their lives.
In this evolving version of care, staff work closely with families to understand and respect the qualities someone had before entering long-term care, and to learn the person’s interests, routines and needs.
A care community might use a resident’s previous occupation or interests to offer daily activities to look forward to. Perhaps a resident who loved gardening arranges flowers for the dining room each night.
Or staff recognize that a resident who wakes at 4 a.m. every day had spent his life as a farmer, accustomed to rising early and having a strong cup of coffee. They adjust to his routine, instead of “correcting” his behavior and persuading him to go back to bed.
“You live in their reality,” said Jennifer Slack, community liaison at Maples of Stoneleigh, a memory care facility in Towson.
Still part of the community
Care communities embracing these changes also are connected to their neighborhoods and the outside world.
For example, Silverado, a senior care company dedicated to memory care that operates in eight states, encourages residents to regularly engage with their communities by making sandwiches for the homeless or baking dog biscuits and visiting animals at the local shelter.
“So many negative dementia behaviors in facilities in the past were related to people feeling like a prisoner, or just boredom and having no sense of purpose,” said Kim Butrum, Silverado’s senior vice president of clinical services.
“But allowing a person to still feel like they make a difference is part of what makes you human. That doesn’t stop because you’re having trouble with language or your memory declined.”
This view is supported by the Alzheimer’s Association, which last year released its recommendations for dementia care that call for a “holistic, person-centered approach to care” and “a positive approach” to supporting people with dementia and their caregivers.
“I don’t want to minimize the challenges, because of course a dementia diagnosis is scary,” said Sheryl Zimmerman, co-director of the program on aging, disability and long-term care at the University of North Carolina at Chapel Hill.
“But many assisted living and other providers know ways to offer quality services for people with dementia. In fact, years ago we didn’t use the words ‘quality of life’ and ‘dementia’ in the same sentence. But now we do.”
Do your homework
Be proactive in researching person-centered care practices, Zimmerman advised. You also can advocate for them in a community you’re considering.
For example, people with dementia can find showers uncomfortable. But staff can adjust the bathing routine to have a resident sit in a chair, lean back and have her hair washed in the sink, which resembles the pleasant experience of going to a salon and makes the task far less stressful.
And person-centered communities will “meet residents where they are,” Zimmerman said, meaning they’ll tailor care to individual needs.
So if a loved one is agitated or begins to wander, staff will look to address the underlying cause, rather than turning first to medication or restrictions.
At Maples of Stoneleigh, staffers work to keep residents engaged, Slack said, and even allow them to wander safely.
“We give them things that can entertain them or keep them busy, but for those who want to wander, it’s secure. There’s somebody to wander with them,” Slack said. Each resident has a GPS bracelet that can even notify staff if a patient falls out of bed.
“Just engaging is the huge thing, and music does the trick. If we start singing, they always remember those [old songs].”
Develop a plan
Try to plan ahead as soon as a loved one is diagnosed with dementia. You want to ensure his or her wishes are clear about how to be cared for as the disease progresses.
Together, you and your loved one can fill out a dementia directive, which outlines your loved one’s preferences for care.
Memory care is typically a care community where staff has specialized dementia training, care or programming. Some memory care units are standalone units, while others are part of a larger assisted living, nursing home or continuing-care community.
About 42% of residents in assisted-living communities have Alzheimer’s or other dementias, and 61% of nursing-home residents have moderate or severe cognitive impairment.
Memory care has become a bigger component of long-term care, although there is no hard data that its care produces better outcomes, Zimmerman said.
Regulations for memory care vary depending on the setting and the state that oversees the facility. Be sure to ask a prospective community exactly what it provides that makes it “memory care.”
Most assisted living and memory care units are private pay. Costs in the Baltimore area average about $60,000 per year, and can reach nearly $100,000.
Nursing homes in this area cost $120,000 or more per year for a private room.
But the most expensive community isn’t necessarily the best. You’ll also want to consider convenience and the programs offered.
To find a nursing home, use Medicare’s Nursing Home Compare tool. For personal assistance in selecting a community, you can hire an aging life care professional (formerly known as a geriatric care manager) to help evaluate a variety of communities and advise you on the best ones for your needs.
Don’t be afraid to ask questions
Larry Barrett created a list of seven communities that met his criteria, which included commuting distance and cost. As his visits progressed, he narrowed his list.
At one community, despite repeated requests to talk to staff, he could never meet with anyone except the marketing manager. “That was a red flag,” he said.
Look behind the tour. Drop in unannounced on weekends or at mealtime. If a community has a problem with that, that’s also a warning sign.
Talk to the life enrichment or activities team. Find out how they include meaningful activities in the daily life of the community, and look for creative approaches beyond an arts and crafts table or a game room.
Scout out the mood of the place. Do the staff smile? Do residents look happy?
Do they have a family council whose members (relatives of residents) share experiences with families of prospective residents? If a community won’t let you talk to other families, consider it a red flag. Also, ask how often you’ll meet with direct care and other staff.
Barrett said he paid close attention to the ratio of hands-on staffers to residents, and “the skill and empathy” those staffers displayed in regular interactions with residents.
“Once I had my short list, I revisited those places and spent time just observing,” he said. Judge whether a community feels like a home rather than an institution.
He said he also realized that what might have been appealing to him — a nice lobby or a large room — wasn’t necessarily what Martha needed. More important for her was the help she’d get for activities of daily life and whether she felt comfortable in her new community.
After a loved one moves in, be an advocate, visiting often and consulting staff.
And care for yourself as well. Barrett advised joining a support group for family members. He said that made his yearlong search for a care community much less lonely.
Before picking a facility, consider talking to your local long-term care ombudsman. For Baltimore City, call (410) 396-3144; for Baltimore County, call (410) 887-4200.
For more examples of person-centered care, watch a documentary by Dementia Action Alliance, an advocacy group, at daanow.org/revolutionizing-dementia-care.
This article was written with the support of a journalism fellowship from the Gerontological Society of America, Journalists Network on Generations and Silver Century Foundation. Margaret Foster contributed to this article.
© The Kiplinger Washington Editors, Inc. Distributed by Tribune Content Agency, LLC.