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Expressions of Distress: Solutions from the Interdisciplinary Team

      Mrs. S is an 89-year-old white woman who has been living in a long-term care facility for two years; she transitioned from an independent living setting (an apartment) after she began to have difficulty managing her personal care and medications safely. She has a past medical history of dementia, believed to be a multi-infarct dementia (current Montreal Cognitive Assessment score is 14/30), a history of hypertension, type 2 diabetes, depression, and degenerative joint disease.
      Her current medications include duloxetine at 20 mg daily; aspirin at 81 mg daily; hydrochlorothiazide at 50 mg daily; and metformin at 500 mg twice a day. Her blood sugar has been well controlled with fasting, and her 4:00 p.m. levels are consistently below 200 mmol/L. Her blood pressure, which has been controlled with hydrochlorothiazide, generally runs in the 130–150 systolic/70–80 diastolic range. She has no acute complaints at this time.
      The nurse reported that Mrs. S has been frequently resisting care, regardless of which staff member works with her. Her personal care is scheduled to accommodate her preference of sleeping until late morning; when Mrs. S is resistant to care, the staff steps away and tries to re-engage later. When Mrs. S is in bed, she will not allow the staff to assist her to the restroom; for this reason, she wears a brief, but she will not allow the staff to change her soiled briefs. The staff try to engage Mrs. S in her own personal care by having her wash her face after setup, giving her gentle verbal cues, and making it fun. Mrs. S is able to put on her clothes following simple, single verbal cues and role modeling. The staff distract her during these activities by talking to her about her children, her prior work as a legal secretary, and politics (she loves politics!). Sometimes these techniques work; sometimes they do not. The staff have not reported any trends or reasons for what makes a difference.
      Mrs. S’s son has been receiving frequent calls about her behavioral expressions of distress, and he is upset. He wants to resolve the issues and has joined the interdisciplinary team (IDT) in a care plan meeting via phone conferencing. He specifically requested that his meeting with the IDT not be attended by his mother so that everyone could speak freely about the issues of concern.

      Behavioral Health Specialist

      Ms. Nisson is family and community services director at Banner Alzheimer’s Institute/Banner Sun Health Research Institute. She has spent more than 20 years specializing in clinical and leadership positions, serving the needs of patients and families coping with emotional, neurological, and behavioral problems.Lori Nisson, MSW, LCSW
      Solicit Mrs. S’s son’s input about any approaches that he believes may be helpful when working with his mother. In addition, evaluate her for current symptoms of depression with the PHQ-9 (Patient Health Questionnaire 9) interview if possible or another observational scale such as the Cornell Scale for Depression in Dementia. Based on the results, consider an antidepressant intervention (the antidepressant escitalopram is currently being studied for the indication of agitation in dementia).
      If this does not help with her activities of daily living (ADLs), the staff should consider the Bathing Without a Battle approach: keeping Mrs. S covered using three towels with clothespins, then removing one towel at a time and replacing it to maintain privacy, dignity, and warmth. It may also be helpful to start the handheld shower head at her feet to get her comfortable and then moving it up her body. The beauty shop can wash Mrs. S’s hair, or a dry shampoo may be used. An alternative to bathing is to use a no-rinse soap while Mrs. S is in bed, letting her know beforehand that the staff would like to offer her a “massage.” Also consider playing her preferred music before attempting ADL care.

      Activities Director

      Ms. Mockbee is an Activity Consultant/Educator – Board Certified through the National Association of Activity Professionals Credentialing Center. She had worked as an activity director and dementia trainer in long-term care for over 28 years until retiring in 2018. She currently consults and speaks in a variety of settings.Diane Mockbee, BS, AC-BC
      Mrs. S may be embarrassed by her incMrs. S may be embarrassed by her incontinence and loss of independence with her ADLs. As we know, consistent staffing is key, along with the use of approaches most effective with dementia such as distraction. Using a “soft approach” (speaking quietly, gently, and directly to her), talk with Mrs. S. Approach her from the front and allow sufficient time between tasks to allow her maximum independence. Encourage the staff to be creative and explore strategies that may help increase her motivation to participate in her personal care and allow staff to assist with it.
      If there is an activity on the calendar or her son is coming for a window visit, perhaps she will be more participatory if she’s “getting cleaned up” for a social event or visit. Details from a comprehensive activity assessment that identify her current and past leisure interests and what brings her joy can be woven into her daily care plan. As her cognitive abilities change, reassess her interests and the approaches that are consistent with her current condition.

      Director of Nursing

      Dr. Lerner is an associate professor at the University of Maryland School of Nursing.Nancy Lerner, DNP, RN
      The staff is doing a good job of using dementia-oriented approaches to maximize Mrs. S’s ability to complete her own care. I would support the staffing coordinator and the nursing staff to help ensure that Mrs. S has consistent caregivers and that the caseloads support the staff in spending necessary time with her.
      Staffing is always challenging (especially in this current environment), so it might be helpful to think about time differently. We have a choice to spend the time upfront (as the staff is currently doing) with Mrs. S, going slowly, allowing time to engage her in the task, accommodating her when she is resistant to care, and being creative with our approaches. Alternatively, we can spend that time focused on the task and “pushing through” to get to the next task.
      Facilitate regular communication with the nurse aides, including their participation in care conferences, to learn about Mrs. S and their experiences with her. Discuss what approaches they try, and what seems to work and not work. Collaborate with the staff to make sure that the tools/forms they use to identify responses (behaviors), interventions, and outcomes are user friendly and serve the task well.

      Social Worker

      Ms. Hector is a social work expert and a coeditor of this column.Paige Hector, LMSW
      Engage with Mrs. S with a trauma-informed care (TIC) lens. She may not be able to participate in a screening questionnaire, but perhaps her son could offer helpful information. I would ask him to complete the PC-PTSD-5 screen (National Center for Posttraumatic Stress Disorder, “Care PTSD Screen for DSM-5,” 2015; https://bit.ly/3bPJ0co) and discuss his mother’s history to determine whether she was ever in a situation in which she felt afraid she was going to die, had an experience in which she felt unsafe, or had difficulty trusting and connecting with others. Given her resistance to care, Mrs. S could be experiencing a delayed behavioral reaction to a past trauma and is being triggered by tasks related to personal care.
      Talk with the son about what his mother would do to self-soothe before she’d moved into the nursing home. The staff has already identified her topics of interest, so now they can look into ways to create a calming environment. Perhaps they can play her favorite music during caregiving and get her to sing along.
      During the care tasks, try to determine the point at which Mrs. S exhibits resistance — for instance, the moment when staff try to remove her soiled brief, or when they try to assist her in transferring from her bed, or when they walk into her darkened room. What staff is looking for are the clues that something in the environment or something they are doing is a trigger for her.
      Engaging with a TIC lens requires patience and intentionality to consider the impact of past experiences on the current situation. Provide frequent updates to the son to build his trust that the staff are trying to provide the best and most compassionate care possible to his mother.

      Summary

      The IDT approach was important in combining each discipline’s unique (and sometimes overlapping) perspective in a balanced set of recommendations. Conducting a video conference can be challenging but also rewarding. Refer to the box titled “Facilitating a Successful Videoconference” on this page for helpful suggestions. During the video conference for Mrs. S, her son tended to take control of the meeting and asked repeated questions about staffing. As the facilitator, the social worker validated the son’s concerns and summarized the staff’s approaches several times. She then moved the meeting along to allow everyone the opportunity to contribute.
      Dr. Resnick and Ms. Hector are members of the Editorial Advisory Board for Caring for the Ages.
      • The team was consistent about addressing the nonpharmacological approaches to care and assured the son that all staff were aware of these approaches and would continue to explore new ways of engaging Mrs. S with her care.
      • The team welcomed the son’s ideas, and all agreed to a weekly update call to discuss Mrs. S’s care rather than the multiple calls he had been receiving whenever she resisted care. He expressed appreciation for this plan and said he felt like part of the team.
      • Given that there are no appropriate pharmacological interventions for Mrs. S, it was to the team’s credit that no one recommended drug management.
      Online meetings have quickly become a mainstay in this world of modified communication. This includes care conferences. Most companies have developed helpful tip sheets to facilitate successful online business meetings; a similar version can be created for families as they prepare for a care conference. Some family members will be comfortable with the technology while others may express frustration or even confusion. It may be helpful to talk with family members to see what their technology capabilities are: for instance, will they join on a computer or a phone, do they have experience with online meetings, and do they have the correct app downloaded? Answer any questions and troubleshoot before the care conference to ensure an experience that is as smooth and glitch-free as possible for everyone. If possible, ask if they have specific questions or areas they wish to discuss so staff can gather the information before the meeting.
      Send the meeting link and call-in information well in advance of the meeting. Provide the family with a tip sheet with information that helps guide a successful meeting. Incorporate visual elements with screenshots to help explain features or to address commonly asked questions. Tips include:
      • Require that everyone uses the video option, if at all possible.
      • Remove background noise and distractions (e.g., turn off the TV).
      • Ensure adequate speaker volume.
      • Explain platform-specific features such as the chat box and “raise hand” function.
      Knowing when to speak during the meeting can be difficult to figure out. It is the facilitator’s role to make sure that everyone has an opportunity to speak. On a video conference, features such as the raised hand or physically raising one’s hand are easy ways to indicate a desire to speak. If the family member is participating with audio only, it may help to name each of the participants and the order in which they will speak.
      A successful care conference requires a skilled facilitator and some basic agreements, sometimes called ground rules. The facilitator is responsible for keeping track of the time, ensuring the comments and content are relevant, redirecting people when necessary, and taking notes on issues that should be addressed outside the meeting. This list of basic agreements applies to in-person meetings as well as video conferences:
      • Be patient with each other in the event of technical difficulties.
      • Take turns speaking, and do not interrupt one another.
      • “Step up and step back” to help everyone be mindful of the time.
      • Practice “both or yes/and” thinking and speaking to create openness and nonjudgmental dialogue.
      As your team gets more experienced with facilitating telecare conferences, update your list of tips and the instruction sheet. Get input from the residents and family members about their experiences, too! Telecare conferences would make a super process-improvement project.