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How to choose a residence for a family member with dementia

photo by Siberia Video and Photo

‘Content and Involved’: The Goal in Memory Care

By Shannon Burgert

For a number of reasons (safety high among them), people with Alzheimer’s disease and other forms of dementia may require memory care—a type of long-term skilled nursing that caters to the specific needs of patients with memory problems.

If you believe you’ll eventually need to place a loved one in a memory-care situation, visit facilities while you have time to make a decision, rather than putting it off until a crisis occurs, suggests geriatric physician Anne Giesen, D.O. Even visiting years ahead of time is not unrealistic, she says.

But shop wisely, as facilities vary not only in the care they provide, but also in activities, services and philosophies. “Just as kids have different needs, adults with dementia do too,” Giesen says.

Memory-care consultant Megan Carnarius teaching a class for Alzheimer’s caregivers. (photo courtesy megan carnarius)

When visiting facilities, arrive unannounced, ask for a tour and ask lots of questions. “Facilities are usually more than happy to show you what they can do,” says memory-care consultant Megan Carnarius, R.N., who served 14 years as executive director of Balfour Cherrywood Village, a memory-care and assisted-living residence in Louisville. She advises not taking your loved one with you to help make decisions, however. Without a functioning short-term memory, people who need memory care “can’t add up all the things you’ve observed” about either their condition or the facilities you visit.

Memory-care facilities should offer a range of activities. “People in memory care need a lot of structure,” Carnarius explains. Without it, “they’ll go to sleep or they’ll withdraw. They have energy to burn, so they can get themselves into a bit of trouble.”

It’s common for people with dementia to display a number of difficult behaviors, from escaping to pacing to yelling and aggression. Such behaviors are about unmet needs, says gerontologist Jessica O’Leary.

Although some residents might be asleep or lounging in front of a TV when you visit, there should also be residents awake and engaged in something (but not corralled). Look at the events calendar and return during an activity that your loved one might enjoy.

Since short-term memory is impaired, people with dementia need activities that give instant satisfaction, says gerontologist Jessica O’Leary, M.S., who runs a free Savvy Caregiver class twice a year in Longmont. Dancing and visual arts fit that bill, and working with clay is beneficial for arthritic hands. Music is a crowd-pleaser even as dementia progresses. Dementia patients may lose their ability to communicate, but they can often remember all the lyrics to their old favorites.

Be sure to visit during mealtime, too. The only thing some people have control over is what they eat, says geriatric psychiatrist Haleh Nekoorad-Long, M.D., so having choices is important. Is there a large dining room, a café- or family-style approach, or all of these?

The Core of Caring

Find out the specific levels of care the facility provides. Some memory-care centers offer adult day care, which can help people with dementia feel less isolated if they still live at home. According to Carnarius, the three daycare programs in Boulder County are AltaVita in Longmont, and Balfour Cherrywood Village and Juniper Village in Louisville. She suggests that participants go at least two or three days a week so they remember the facility and feel comfortable returning.

Geriatric psychiatrist Haleh Nekoorad-Long, M.D., with an ice sculpture at AltaVita Memory Care Centre in Longmont. Choice in foods and creature comforts is important to dementia patients, she says. (photo courtesy Altavita)

As dementia progresses and care needs increase, is the facility equipped to allow a loved one to “age in place”? “I think the worst thing you can do to someone at the end of their life, when everything is chaotic, is to say, ‘Oh, sorry, we can’t take care of you anymore,’” Nekoorad-Long says. Be sure to ask the facility for any reasons that a resident might be discharged.

Increased levels of care mean higher costs. Inquire about which changes prompt a shift in care levels. If your loved one is transferred from one level to another just a month after moving in, you’ll want to be prepared. A facility may require you to hire one-on-one care—is that a possibility?

Look into medical care, as well. Can your mother keep her doctor? Are there physicians who visit, or will you need to take your father to the doctor every time he has a cold? If your spouse falls, do you need to call 911? Does the facility work with palliative-care physicians and hospice?

Turnover is a common challenge at memory-care facilities. Inquire about staff members and speak to the executive director. How long have the executive director and nursing staff been on board? Find out the ratio of direct-care staff to residents during the day and night.

Colorado mandates only one hour of dementia training per year for staff in memory-care facilities. What percentage of the staff is trained, and what’s the level of ongoing training?

Gauge the staff’s engagement. Do staff members make eye contact and greet residents by name? “It should feel safe and calm, with a certain rhythm to the day,” Carnarius says. “There should be a sense of ‘we’re all in this together.’” Ask how the staff meets the personal-hygiene needs of residents.

Finally, staff should be creative in meeting patients’ needs. “When dementia gets worse, your world gets really small,” says Nekoorad-Long. Memory-care facilities will often have items, like dolls or a desk with office equipment, that may seem a little odd to an outsider but sometimes give residents comfort. A resident might feel that she’s taking care of a baby, or going to the office.

But what works one day might not work the next, Giesen cautions. That comforting doll may become a source of anxiety the next day if the person doesn’t feel that she can care for it. “It’s a moving process,” Giesen says. “What do you do differently today to make that person’s life as good as it can be?”

Playing Detective

As for the facility, it should be clean and odor-free, of course. But many people with dementia need room to roam (six in 10 dementia patients wander, according to the Alzheimer’s Association). Many facilities are designed with a “racetrack”—a loop that allows people to wander and not feel contained, but doesn’t lead to dead-ends where they may feel trapped.

Gerontologist Jessica O’Leary says that for people with dementia, the best activities offer instant satisfaction. (photo courtesy jessica o’leary)

Outdoor spaces might be a priority, but some dementia patients are clever with exit strategies—pulling up chairs to climb over a fence, for instance. Many facilities have courtyards because they tend to be more secure. They also don’t tempt people, as a fence does, with whatever might be on the other side. A retired contractor who had successfully “escaped” his residence multiple times found satisfaction when his family brought in used furniture for him to sand. “He was able to be safe and feel good about himself,” O’Leary explains, to be “content and involved”—her memory-care mantra.

As well intentioned as it might be, taking loved ones out of their residence for get-togethers can provoke anxiety, Nekoorad-Long says. Many facilities have special rooms you can reserve for parties and celebrations.

It’s common for people with dementia to display a number of difficult behaviors, from escaping to pacing to yelling and aggression. Such behaviors, O’Leary says, are about unmet needs. (More questions for memory-care directors: Are staff members trained in behavior management? Are meds a go-to fix?)

“People with dementia lose the ability to initiate. We need to do that for them,” O’Leary says. “Our job is to play detective. We get distracted at the surface level, by what residents say and do, but we need to take a step back and be analytical.”

She tells the story of a woman whose own health was declining because caring for her husband was so taxing—he wouldn’t leave her side for five minutes, which also kept her from cooking, her favorite thing. The man had hated the kitchen, but O’Leary persuaded his wife to assign him a cooking task. Turns out he was content peeling vegetables for hours. “It saved her life,” O’Leary says, “because he could do that, he was capable of it. It’s not about what he’d like to do or not do. It’s about what he can do now.”

“I would love it if people could see dementia as just a continuation of life,” Giesen says.

Because even in dementia, O’Leary says, “we still need a purpose, we still need to
be fulfilled.”

Editor’s note: Seniors Blue Book, an extremely helpful guide to community resources, services and facilities, is published in 25 markets, including Boulder County. You can read the virtual edition at www.seniorsbluebook.com. Page 40 of the current edition contains an article by Megan Carnarius, “Memory Care: When Is It Time to Seek Help?”, with a chart showing the stages of dementia.

Shannon Burgert, Ph.D., writes often about health-science and sports for Boulder Magazine. She teaches fifth grade at Fireside Elementary School in Louisville.

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