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Filling the Behavior Tool Kit With Innovative Resources for Dementia Symptom Management

      Graphical abstract

      “This is an evolution,” said Leslie Eber, MD, CMD, board member of AMDA — The Society for Post-Acute and Long-Term Care Medicine, about the Colorado Dementia Partnership, an innovative initiative in her state. The group’s impressive and extensive efforts to educate practitioners, caregivers, patients, families, and others are helping to promote person-centered quality care for people with dementia. To date, the Partnership has produced an array of resources and materials, but it didn’t happen overnight.

      The Beginning

      It all started with a desire to have an impact, especially in rural areas. “People really needed education about antipsychotic use and behavioral management for patients with dementia. We wanted to reach rural providers and caregivers,” Dr. Eber said. The result was the creation of the Colorado Dementia Partnership, a collaboration of geriatrics physicians (including Dr. Eber) and psychiatrists, the Colorado Society for Post-Acute and Long-Term Care Medicine, the Alzheimer’s Association, the Colorado Health Care Association, and the Colorado Department of Public Health and Environment. Its mission is to enhance the care of people with dementia. The group started by creating a smartphone-size card that people could easily carry around.

      Card of Caring

      The card is small, but it’s big on information. It offers valuable tips on nonpharmacologic interventions that “you can implement in the moment when you’re panicking and don’t know what to do,” said Dr. Eber. “The tips help keep people calm so that they can focus on helping the patient.” Appropriately, the card uses the acronym “RESPOND”:
      • R. Rule out acute illness, pain, or discomfort.
      • E. Engage the senses: sight, touch, smell, taste, and sound.
      • S. Soothe. Evaluate the environment of noise, climate, and other stimulators.
      • P. Practice calm. Adjust your body to be at their eye level.
      • O. Offer meaningful choices and things to do.
      • N. Never argue, confront, or tell the resident they are wrong.
      • D. Develop a plan for physical movement, exercise, and fresh air.
      The response to the card was positive. Dr. Eber and her group heard from many people that educating caregivers and others about managing behaviors in patients with Alzheimer’s disease or other dementias was challenging, particularly in rural areas. These individuals clearly wanted more, so the Partnership put together a powerful program and presented it at a Colorado Health Care Association meeting.
      “We had people close their eyes and imagine having someone touch or move them, having something cold pushed in their lips, and so on. We helped them imagine what it would be like to have dementia. It reached people in a way they hadn’t experienced before. It was very effective,” said Dr. Eber.
      The Partnership wanted to present the program throughout the state. However, they soon discovered that many facilities, especially those in rural areas, couldn’t spare the time to participate in person, even though they needed the information. Dr. Eber said, “In some places, people have to travel 45 to 50 minutes to get to a grocery store. They have limited access to resources.” The answer, the Partnership decided, was a webinar — a program that people could view at their convenience.

      Mock Meeting Rocks

      Part of their presentation involved a mock psychopharmacology meeting. “By law, facilities have to have this meeting, but people often don’t know what to do with it; so we presented Psychopharmacology Meeting 101,” said Dr. Eber. This meeting, she said, is an important opportunity for the interdisciplinary team to review psychotropic medication usage in the nursing home.
      Accompanying the mock meeting was a handout with a checklist of issues that should be addressed at the meeting, medications to review, suggestions for additional resources, and more. This is designed to help teams make the most of their psychopharmacology meetings to ensure that medications are used appropriately, dose reductions are happening in a timely fashion, documentation justifies use, and nonpharmacologic, person-centered approaches are prioritized and used.
      • For a smartphone-size card with information on nonpharmacologic interventions for dementia, one-page PsychPharm Tracking Tool instructions, and one-page information sheets on the appropriate use of psychotropic medications in nursing facilities, access the article’s online supplement.
      • Faculty members at Pennsylvania State University’s College of Nursing developed the Nursing Home Toolkit on nonpharmacologic behavioral health strategies to address the behavioral and psychological symptoms of distress (BPSD) common in long-term care, especially among residents with dementia. http://www.nursinghometoolkit.com/
      • The National Institute on Aging has developed a set of free resources, including clinical practice tools, training materials, and more, for professionals working with individuals with Alzheimer’s or other dementias. https://www.nia.nih.gov/health/alzheimers-dementia-resources-for-professionals
      • AMDA — The Society for Post-Acute and Long-Term Care Medicine has developed a guide on the 3Ds – delirium, depression, and dementia – in the post-acute and long-term care setting. https://paltc.org/product-store/3ds-delirium-dementia-and-depression-pocket-guide-set-5
      Helping teams understand the value of accurate and detailed documentation also is key, Dr. Eber observed. “Explicitly documenting the intended benefit(s) of psychotropic medication gives them something objective to evaluate the ‘success’ of the agent one to three months later,” she said. For instance, if the goal was to decrease unprovoked, aggressive behaviors, but the drug is still being used two months later because the patient sleeps all the time, she said, the drug has failed; and the documentation will reinforce this.
      Additionally, the group developed a one-page PsychPharm Tracking Tool instruction set that includes sample nonpharmacologic interventions. In conjunction with effective meetings, this helps ensure that “residents with a primary dementia diagnosis aren’t receiving unnecessary psychotropic medications,” Dr. Eber said.

      One-Page Wonders

      The Partnership also developed one-page information sheets on the appropriate use of psychotropic medications in nursing facilities. “We found that if we limited information to just one page, people would read it,” said Dr. Eber. Cutting the information down to one page wasn’t easy, she admitted. “We had to pick and choose.” However, the result was a handy resource, particularly to help nonclinical staff, caregivers, patients, and family members who, she said, often don’t really know what these drugs are or how they’re used. The information sheet starts with a definition: “Antipsychotic medications are used for psychiatric and inherited conditions like schizophrenia, bipolar disorder, Huntington’s disease, and Tourette’s syndrome. They are seldom effective for other conditions.”
      Dr. Eber said, “We’ve heard from people that they’re grateful for this resource. They’re hungry for this information.” She stressed how much facility teams need evidence-based data about these medications and the importance of focusing on nonpharmacologic interventions to address behavioral issues. “We heard from facility teams that it is often families driving the use of these drugs. They don’t understand what they’re for or the risks they pose,” she said. Providing care teams, patients, and families alike with consistent, clear information not only improves outcomes but also communication and relationships.

      The Secret Sauce of Success

      Thanks to the Partnership’s efforts, more practitioners, caregivers, family members, and others are focusing on nonpharmacologic interventions for behavioral issues in patients with dementia. “Our secret sauce is that the first thing we did was get the right people at the table,” said Dr. Eber. “We asked people who are truly invested in this population. We wanted people with connections to the post-acute and long-term care community.” Another key, she said, was that they didn’t bite off more than they could chew. They took one project at a time — starting with the card — and finishing each to the group’s satisfaction before moving on to the next.

      The Nexus of Needs Assessments

      Dr. Eber stressed that it is important to have some way of assessing what tools and/or resources a particular facility or team needs. Just as behavior management in dementia is not a one-size-fits-all effort, neither should training and education on this topic be generic. Dr. Eber said, “Having small-group discussions at the nurses’ stations and listening to what people are struggling with is valuable.” She added, “On a given day, I’ll go to the nurses’ station on each shift and just listen. Then I’ll ask what they’re struggling with and what they do when they encounter a behavioral issue.”
      These informal conversations are powerful, Dr. Eber said. For instance, she discovered from an early morning conversation with some certified nurse assistants that they had some patients with personality disorders, and they didn’t know what to do. “I helped them take a deep breath and develop a plan,” she said. “I think that coming in and talking to staff about their toolbox and offering them some tools to fill it is helpful. It is the most organic way to assess and address their needs.”
      Reaching out and talking to a variety of stakeholders has been enlightening for Partnership members. “It made us think about things such as what it’s like to hear the world ‘psychotropic’ and not know what that means. It reminded us that we can’t assume everyone knows everything or has the same understanding or definition of various terms,” Dr. Eber said. “Having that perspective has been very helpful.”
      Currently, the Partnership is working on a one-pager to address advance care planning. “Again, people often don’t understand what care planning is or why it’s important. With facts and information, we can help ensure that people have realistic expectations,” said Dr. Eber. “We also want to bring a thoughtful, humanitarian perspective to these heartfelt conversations.”
      As a result of all these efforts, facility team members, especially those in rural areas, can feel more confident and less stressed when patients act out. “It’s often surprising how overwhelming behaviors can be. In the heat of the moment, people often aren’t sure what to do. The easiest thing to do often is make a phone call and give a medication,” Dr. Eber said.
      “Our goal is to help people provide care with kindness, dignity, and respect for patients with dementia. Our dream is that the care planning one-pager will go into admission packets at facilities and be kept at the nursing stations to promote a more collaborative care process for these patients. Everyone will be on the same page, and everyone will benefit.”
      Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, PA, and a communications consultant for the Society and other organizations.

      Supplementary Material