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Dementia Care: Use MDS and Other Tools to Interpret Behavior, Boost Comfort

Comfort—palliation—should be a critical component of all nursing home care, suggests Ann Wyatt, a palliative and residential care consultant for CaringKind in New York City. “It is not about giving up. It’s about deciding, Why should a resident be uncomfortable just because they’re old and live in a nursing home?”

As the team at the Beatitudes Campus in Phoenix, AZ, always says, “We are all experts on our own comfort,” says Wyatt. “This includes residents with dementia. They know what comforts them, but they can’t always tell you. Everyone in long-term care is taught that behavior is communication for residents with dementia, but that principle isn’t always put into practice in terms of assessing discomfort and finding comfort.”

Know resident preferences, starting with MDS section F

Behaviors that might be unclear on their own often make sense when providers view them in the context of the resident’s preferences, says Wyatt. “Effectively using the tool that you already have—MDS section F (Preferences for Customary Routine and Activities)—is a good starting point for understanding resident preferences and preventing problems before they occur.”

“Unfortunately, if a resident can’t answer to rate the importance of the items in F0400 (Interview for Daily Preferences) and F0500 (Interview for Activity Preferences), sometimes assessors don’t give this section much attention, she points out. “However, you shouldn’t assume that the information isn’t important for a resident with dementia who is not interviewable. These questions about personal preference matter for all residents, including those with dementia.”

The coding instructions for F0300 (Should Interview for Daily and Activity Preferences Be Conducted?) in chapter 3 (page F-1) of the Long-Term Care Facility Resident Assessment Instrument 3.0 User’s Manual include the following steps:

Determine whether or not resident is rarely/never understood verbally, in writing, or using another method. If the resident is rarely or never understood, attempt to conduct the interview with a family member or significant other.  

If resident is rarely/never understood and a family member or significant other is not available, skip to item F0800 (Staff Assessment of Daily and Activity Preferences).

“So, assessors should make a good-faith effort to interview the family, significant other, or other representative to see if they can provide information about the resident’s preferences,” says Wyatt. However, if F0800 (Staff Assessment of Daily and Activity Preferences) needs to be completed, staff should observe the resident across multiple shifts to get the most accurate picture possible, following to the steps for assessment in chapter 3 (page F-16) of the RAI User’s Manual:

1. Observe the resident when the care, routines, and activities specified in these items are made available to the resident.  
2. Observations should be made by staff across all shifts and departments and others with close contact with the resident.  
3. If the resident appears happy or content (e.g., is involved, pays attention, smiles) during an activity listed in Staff Assessment of Daily and Activity Preferences item (F0800), then that item should be checked.  
If the resident seems to resist or withdraw when these are made available, then do not check that item.

Pay attention to MDS section E red flags

“Residents with dementia often can only communicate that they are uncomfortable,” says Wyatt. “There are four items on the MDS that you always want to look at for residents with dementia because they identify behaviors that are cues that the person is uncomfortable or in distress.”

These items are as follows:

  • E0200A (Physical Behavioral Symptoms Directed Toward Others);
  • E0200B (Verbal Behavioral Symptoms Directed Toward Others);
  • E0200C (Other Behavioral Symptoms not Directed Toward Others); and
  • E0800 (Rejection of Care—Presence and Frequency).

“Sometimes, these items are coded for a resident quarter after quarter after quarter,” points out Wyatt. “The behaviors often are brushed aside as symptoms of dementia. If I had a nickel for every time I have heard ‘It’s just the dementia,’ I would be very wealthy. However, these behaviors are almost never the dementia. Usually, they indicate that the resident is intensely bothered or in distress. So, you shouldn’t ignore these behaviors, and you shouldn’t go straight to the physician for an antipsychotic medication. You need to get to the root of what is bothering the resident.”

Wyatt offer the case of a resident who is combative and rejecting care when they are woken up at 7:30 a.m. “You have to look at what could be disturbing this resident,” she notes. For example, issues for the team to consider may include the following:

  • Is the resident in pain? “Many people are tight and uncomfortable for the first five to 10 minutes after getting up in the morning. If you don’t have dementia, you understand it and know that you’ll soon be loose and fine,” says Wyatt. “However, a resident with dementia who has that type of pain only knows that they hurt. For some residents, acetaminophen about half an hour before a.m. care may make a big difference.”
  • What was the resident’s prior sleep schedule? “If a resident with dementia spent most of their life staying up late at night and sleeping until mid-morning or noon, they won’t react well to a 7:30 a.m. wake-up call and may reject early morning care. That often can be solved with a schedule adjustment, but in any case, it’s never a good idea to wake up a resident from a sound sleep because they always could have just had a bad night.”

It’s important that staff understand that these behaviors don’t suggest that the resident is bad and needs to be good, says Wyatt. “You may even want to switch out the word ‘behaviors’ with ‘distress.’ Staff need to know that if, for example, they see a resident moaning or calling out, that symptom indicates that the resident is in distress, and they should immediately think, ‘This resident is in distress. What can we do about it?’”

Use a behavior-based pain scale for residents with dementia

Nursing homes that care for residents with dementia should employ a behavior-based pain scale, such as the Pain Assessment IN Advanced Dementia (PAINAD), as part of their pain assessment and treatment policies—even with residents who are interviewable, suggests Wyatt. “The distress that residents with dementia often communicate through their behavior frequently has to do with some aspect of pain.”

However, when asked if they have pain, residents with dementia often will automatically say no whether or not they understand the question, says Wyatt. “If you point to an obvious source of pain (e.g., their arm) and ask, ‘Does this hurt?’ you may get a yes. However, a tool like the PAINAD that assesses breathing, negative vocalization, facial expression, body language, and consolability really helps you (1) get to the bottom of whether pain is behind the resident’s distress, and (2) track the resident’s pain to determine whether treatments for the pain are working.”

Practice trauma-informed care

Some residents could experience the tension, disruption, isolation, and heavy death toll of the COVID-19 pandemic as a new trauma, notes Wyatt. “For others, the pandemic may reactivate anxieties from earlier traumas. If a resident is being triggered and you can’t figure out any other way to explain what is happening, you may want to explore with the family whether there was a past trauma. But in either case, you want to recognize the resident’s distress and find ways to avoid re-traumatizing them and make them comfortable.”

 Trauma-Informed Care Resources   “How Trauma Can Affect the Person With Dementia,” the winter 2018 issue of CaringKind’s ADvancing Care newsletter.

The following AAPACN articles:
Applying the Four Keys of Trauma-Informed Care to Care Planning”;
Staff Education and Trauma-Informed Care: Training Basics”;
Trauma-Informed Care and Care Planning: Implementation Tips for NACs”; and
10 Keys to Operationalizing Trauma-Informed Care.”

The AAPACN 10 Fast Facts About Trauma-Informed Care Tool.
The AAPACN Certificate Program for Implementing an IDT Approach to Trauma-Informed Care.

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