Nursing’s Ruth Lopez Working to Bring Dignity to Dementia Care with ADVANCED-Comfort

When Ruth Lopez looks at the way dementia patients are cared for, she knows there is a better way, and she may have it in ADVANCED-Comfort. 

“ADVANCED-Comfort is a philosophy of care that promotes personhood and dignity for people with advanced dementia who are not able to speak for themselves,” said Lopez. “It serves to humanize the care that we deliver. “

ADVANCED-Comfort is Lopez’s creation that she created five years ago, and it’s gaining traction. The Israel Science Foundation (similar to the U.S. National Science Foundation) awarded her a grant to study the concepts and test it in its nursing homes. Here in the U.S., a grant from the Hillman Foundation is paying for adaptation and testing among Chinese American family caregivers. She has a new website that’s been translated into Russian and Hebrew and traditional Chinese. 

So, what is ADVANCED-Comfort? It’s a program that contains educational modules about what advanced dementia is and how to be an engaged family caregiver. But the most useful component is the 6 M Care planning tool, which is a questionnaire for families that creates a personalized care plan. 

“And then the Care Plan is displayed in the residence room,” said Lopez. “So, everyone who goes into patient’s room knows who this person is and what matters to them.”

The 6M Care planning tool is made up of the following M’s: 

1. Matters: What matters to the patient? What do they like to be called?
2. Meaning: What are meaningful activities? What makes them smile?
3. Mealtime: What are their favorite foods and how do they like to be fed?
4. Medications and treatments: Are there medicines they might not need anymore?
5. Mobility: How do they like to be moved, and where they like to be in the building?
6. Make personal care comfortable – How do they like their care to be delivered? How do they like their teeth brushed? How do they like to be bathed? How do they like to be positioned?

South Cove Manor in Quincy has been using ADVANCED-Comfort for three years and says it has helped immensely. For example, with a patient who used to own a Chinese restaurant. Leaders there put the name of the man’s restaurant on his room door so that he would return to the place familiar to him. 

“He doesn't remember anything, but when he sees the name, China Pearl, he knows that's where he used to work for 30 years, so he goes into his room,” said Li Chen, Administrator of South Cove Manor. “When people are eating, he's not eating, he will be walking around to make sure every single table is full of food because he thinks he's still working. So, we put that in the care plan and tell the staff that when he wanders in the dining room, ‘Don't make him sit down. He will not sit until everybody finishes.’” 

South Cove says the ADVANCED-Comfort approach was critical in other cases, like helping staff learn that the only music a client would listen to was Mozart, or with another client who was a former chef and wanted to be involved in meal prep, even if he wasn’t actually handling any food. 

“It empowers them to have a voice in their care, even when they're not able to say it now,” said Michael O'Brien, Director of Nurses at South Cove Manor. “We're able to cater towards what they really like.”

Case in point: the husband of a patient pointed out that every time lab tests were done on his wife, she would become anxious and be in pain because she didn’t like needles. 

“We thought about it and realized that based on the meds that she's on, we're not using anything that’s going to cure dementia or anything like that,” said O’Brien, who added the lab tests were halted. “It’s one thing finding out about the person but when you're able to change someone's advance directives based on their wishes, it makes a significant difference. If labs and needles are causing them pain and anxiousness, they're not here for that. Other facilities might want to be more aggressive, but when you really learn more about the resident and their family's goals for being here, it makes an enormous difference.” 

The Genesis 

A geriatric nurse practitioner, Lopez has seen the discrepancy in nursing home care, how some people get comfort, focused end-of-life care, while others get invasive, painful hospital procedures that don't benefit them. And her research has focused on why some people get this comfort-focused care and others don't.

“Based on my research and years of practice, I concluded that family members want to feel like they did everything they could at the end,” reasoned Lopez. They want to say, ‘I did everything I could for my mom.’”

For people with advanced dementia, Lopez says advanced directives may set up a false dichotomy between doing everything or doing a diminished form of care.

“When people are dying with dementia, comfort is the only realistic goal of care. Interventions such as CPR and intubation might bring them back to breathing again for a short period of time, but it's not going to cure their dementia.  So, while we are required to ask about interventions such as Therefore, we need to shift the focus of our advance care planning conversations from focusing on the care we are going to withhold to discussing the care we are going to provide to achieve comfort.”

Lopez says her tool is different from traditional advanced directives because the focus isn’t on life-saving measures, but rather, daily care.

“It’s not to replace advanced directives, but if we change the conversation to be, ‘Let's talk about all the things we're going to do for your loved one to meet their comfort needs. Let's have a 45-minute meeting where we produce this care plan.’ Then you say, ‘Now, do you want CPR?’ When we've had that conversation, family member have said, ‘No, you're doing everything. Why would I want CPR?’”

She says nursing homes, family members, and anyone can access her tool for free online. 

“When people have dementia, they also still have humanity,” argues Lopez. ““Every person has a spark of life within them. It’s incumbent upon us—as healthcare providers and as human beings—to honor that spark, especially in those who can no longer speak for themselves. How we care for them reflects who we are.”” 

A Choice in Approach 

South Cove has been gradually implementing ADVANCED-Comfort across its 141-bed long-term and rehabilitation facility.

“What the 6 Ms really emphasizes is, how to create a higher level of dignity for these people?” reflected O’Brien. “Once you become more immersed with the person and familiar with who they are, you can find ways to preserve that dignity, and I don't know if a regular nursing home that doesn't use ADVANCED-Comfort can offer that dignity all the time.”

Lopez says nursing homes can offer that continuous dignity if they take the holistic approach that comes with her approach. 

“What most nursing homes do now is sit with families and say to them, what is your goal of care ‘Would you like us to do everything to keep your loved one alive? Do you want to have CPR? Do you want ventilation? Do you want hospitalization’ and we have a checklist,” noted Lopez. “It's the Medical Orders for Scope of Treatment, or MOST form, and families check off, ‘I want this’ or ‘I don't want this this and this’ and unfortunately that's where the conversation ends.

“The problem is that after families have provided their wishes, they feel like they're now doing nothing.”

The majority of people with dementia are cared for at home by family members, but as dementia gets worse and requires 24-hour care, care is moved to nursing homes; approximately 70% of people with dementia die in nursing homes.

“ADVANCED-Comfort brings to the next level what we actually are going to do,” noted Lopez. “‘OK, you don't want CPR, so we won’t give you CPR, but this is what we're going to do. We're going to call you by your name. We're going to include your family. We're going to bring you to your favorite music. We're going to give you your favorite foods.’  And you can see how that is very, a vastly different message to families than ‘comfort measures only’ that are prevalent in most nursing homes.” 

A message that’s resonating at South Cove Manor. 

“I feel like the patient's family feel so special when we mention those 6Ms; they feel like we care about each individual,” summarized Chen. “The patients come in, and they spend the rest of their time here, but we still treat each person as an individual. We try to do a care plan just towards to their needs, and we also try to bring something unique for that patient. It makes a substantial difference and gives them that dignity that’s so important.”

To Lopez, better dementia care is within reach for all nursing homes. 

“It’s simple, it’s not complex,” she reasoned. “But these tiny actions, if you can unlock it, you can touch that spark in someone. And that can make all the difference. That’s what matters.”

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