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 Shelter From Dementia’s Storm

In assisted living, secure environments and person-centered care foster personal freedom.

 

 

Early last year, the Centers for Medicare & Medicaid Services (CMS) issued a rule that has significant implications for assisted living facilities providing memory care.

Among other changes, the rule included new criteria facilities must meet to participate in the home- and community-based services (HCBS) Medicaid waiver program that allows eligible seniors to live in assisted living rather than nursing facilities. 

CMS says that its goal is to ensure that Medicaid waiver residents receive person-centered care in the most integrated setting possible. 

A resident’s person-centered plan, as defined by the rule, must ensure his or her health, welfare, and support needs are met and services delivered in a way that reflects the resident’s preferences and goals. To do this, the planning process must:

  • Be directed by the resident (and representatives of their choosing);
  • Identify the resident’s goals and preferences; and
  • Assist residents in achieving personally defined outcomes.

 N​​ew Requirements For HCBS Settings 

The waiver programs already excluded what CMS terms “institutional settings,” such as nursing facilities. 
 

The new rule takes that idea a step further: Assisted living communities on the grounds of or adjacent to an institution are excluded—although if the state thinks a certain community actually is HCBS and can prove it to CMS, it can choose to include the community in the program. This isn’t an option, though, when the institution is county- or state-owned.

The rule creates a more outcome-oriented definition of HCBS settings, as opposed to definitions based solely on location, geography, or community’s physical characteristics, such as size.

However, states can choose to further restrict eligibility based on those elements. “States are able to ‘raise the bar’ with regard to the rule and create additional parameters around what they deem to be home- and community-based,” said David Kyllo, executive director of the National Center for Assisted Living, in a member update. 

Institutions Or HCBS?

Whether secured memory care units or communities are considered “institutions” is still up in the air, as states have just started to submit their transition plans to CMS for review and approval. 

If secured memory care in an assisted living center is deemed institutional, any Medicaid residents​ in those units or centers will have to be moved somewhere else. If their condition requires they be in a secured environment, standard assisted living is unlikely to be an option. Instead, CMS says, they must be moved to an HCBS setting without institutional characteristics. 

This is even more likely in places such as rural areas that just don’t have the full array of seniors housing and care models. 

“I think what concerns us as providers is we want people to be appropriately placed in the right setting, but the reality is they just don’t have services available in some places,” says Michaun Shetler, who manages The Good Samaritan Society’s assisted living component. “So where would [those residents] end up?”  

Shetler and others fear that, contrary to CMS’ goal of expanding person-centered care and community involvement, some residents—particularly those with Alzheimer’s or other dementias—could  ultimately find themselves moved to a more institutional setting. 

There are some needs out there that states and counties just can’t meet, Shetler says. “Passing specific rules and making it more challenging for providers to do the right thing—sometimes that can be frustrating,” she says. “I think the concept is good, but that is the reality: There just isn’t a perfect fit for these individuals to go to.”  

State Plan​​s For Making It Work

Although CMS’ deadline for states to submit their transition plans was last month, a number of states are still trying to understand the rule, and still figuring out how to implement its many requirements.

Shetler has been monitoring the transition plans coming in so she can keep an eye on what problems states may be encountering.

“What I’ve noticed is that the states are in varying stages,” Shetler says. “Some are on top of it and have submitted their plan; many are still in the assessment stages.”

A good sign, though, is that Good Samaritan is finding that most states and counties are quick to work with providers in designing a solution that meets everyone’s needs.

“I guess what we are seeing is most of the states seem to be pretty realistic,” says Shetler. “They’re working with providers to see if they can do some modifications to keep the person in place.”

Security Through Prevention And Person-Centered Care

For Rita Altman, Sunrise Senior Living’s senior vice president of memory care and program services, the word “institution” just cannot be applied to the memory care neighborhoods she oversees, secure or not. It’s a non sequitur that defies reason. It flies in the face of everything Sunrise has been about from its inception, she says.

“We’re not institutional,” she says. “The very premise of Sunrise from the time of its founding was to provide holistic care in a very homelike setting.

“A Reminiscence Neighborhood is a real homelike setting,” she adds, “and the additional level of security is there to provide safety to residents with moderate to severe memory loss who may no longer be able to recall their address, who are disoriented as to person or time. If they lived outside a secured neighborhood, it wouldn’t be a safe environment for them.”

Security for memory care residents is not as simple as preventing their leaving the residence unattended. A bigger risk to their safety may be encountering situations that frighten, confuse, or frustrate them. Providing security in that context is much more complex.

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​The Sunrise Approach

Sunrise trains all team members in an approach based on the Validation Method, which Sunrise has adapted over time. To complement that care approach, Sunrise rolled out new modular training about three months ago based on the notion that residents with memory loss are not exhibiting “challenging behaviors,” rather, they are expressing an unmet need. The goal is 100 percent compliance. 

Few people could be more qualified to lead that effort than Altman. Along with her more than 30 years’ experience in health care facility management, Altman is one of only eight Validation Masters in the world, and she was taught the technique by its creator, Naomi Feil, a geriatric social worker whose method is practiced internationally.

The Validation Method starts with the staff member taking a deep, cleansing breath.

The purpose of this is to “turn down the caregiver’s own internal dialog,” says Altman. It gives the caregiver a moment to center herself, open, and focus completely on that resident in that moment.

“Establish good, genuine eye contact at the level of the resident’s eyes,” says Altman. “Use a very warm tone of voice, and rephrase what the resident is saying to be sure you’re hearing them right or that they know what we’ve said. We also want to match their emotion.”

The key is achieving true empathy for what the resident is feeling, regardless of how irrational it may seem. Arguing with the resident, insisting he or she see “reality” achieves nothing. It’s the care manager who must see the resident’s reality.

Empathetic listening, and encouraging the resident to express his or her feelings, helps the staff member identify the underlying issue. Once that’s known, the next step is finding ways to ease or resolve it. Music, touch, and reminiscence often play a role here.

“The most important part is we’re hearing it’s helping the team members to have those ‘aha’ moments, and they are better able to figure out and meet the resident’s need,” says Altman.

​Seeing The Underlying Human Need 

The Sunrise training is centered around understanding the basic human needs that are true for everyone, regardless of any health condition or physical status. The training draws on Abraham Maslow’s Hierarchy of Needs.

“Really, what we do is train all of our team members to understand that every resident has basic human needs,” says Altman. Alzheimer’s disease and other dementia can make it hard for residents to express what they need, or even know that they need it. That’s why training staff to identify it for them is so important.

“The challenge is to meet residents in their own world, to step inside their shoes,” says Altman. “It requires us always being very open and observant and trying to figure out what that need is.”

And then it requires knowing the resident well enough to find a way of meeting that need, rather than relying on redirecting their attention onto something else.

Altman uses grief as an example. Redirecting a grieving resident by offering a bowl of ice cream may help briefly, she says, but the underlying human need of intimacy, belonging, friendship, can only be resolved with a real human connection.

Rather than just offering the resident a distraction such as a bowl of ice cream, the caregiver encourages the resident to express his or her feelings. Ultimately, the care manager gets them both a bowl, and as they share the ice cream they can spend time just talking, helping the resident reminisce about a loved one he or she is missing, and talking about all the feelings the loss has engendered.

​Charting Individual Memories

Because dementia is a degenerative condition and a day may come when residents can’t remember what they used to like, what made them feel good, safe, or loved, Sunrise staff keep a record of each resident’s individual favorite things, “so we have all that knowledge available and can pull on that on any given day,” Altman says. “It’s making care so person-centered that we know what gives that resident a sense of meaning and purpose even when they can’t say those words. When we validate them in those ways, you can see it on their faces.”

Altman remembers a particular Sunrise resident whom she saw at different points of her dementia’s progression. 

“She always loved to sit in the sun, and she loved symphony music. At Sunrise, at certain times of the day, we knew that would make her feel better. As her dementia progressed and she couldn’t get around as much, the team members encouraged her to sit in a comfy chair with her favorite afghan, with symphonic music playing and the sun streaming through a nearby window. She couldn’t have said that’s what she wanted, but you could tell that it was making her feel good.

​Expecting Good Outcomes

The recent training specifically focused on behavioral expression is having good results, Altman says, and although the program is still too new for anything other than anecdotal evidence, she does expect to see data to prove it eventually.

“I think it’s really helping people understand how important Sunrise’s approach is, how important it is to help that resident feel secure, feel heard, feel they have purpose—to meet their basic human needs,” Altman says.

“It’s truly just trying to meet them, join their journey wherever they are on that particular day.” 

Kathleen Lourde is a freelance writer based in Dacoma, Okla.​​​​

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