Seeing the Person, Not the Illness Rita A. Jablonski, PhD, RN, ANP Anthony DeLellis, PhD School of Nursing

Why are you here? We use this slide, not only as an “ice breaker,” but also as a method for determining the motivations of the participants. The answers we usually receive vary, from the “because I was told to come,” to “to become a better nursing assistant.” The information from this slide also helps the presenters, because you can refer back to people’s motivations throughout the presentations. According to adult learning theory, adults learn best if what they are being taught has direct applicability. So, if someone mentions a particular difficult family situation or caregiving situation, chances are the remaining participants have similar concerns even if they have not voiced these concerns. By referring back to the reasons people provided, you, the presenter(s), can make the presentation meaningful to the participants.

Overview of course Person centered care (today, and every class) Best practices for working with clients with specific disabilities, for example, people who have dementia (today, 2nd class) Best ways to communicate with clients who have specific disabilities, for example dementia (today, 2nd class) We provide the overview to give the participants structure regarding the content.

Overview of course Changing the environment to best care for our clients (2nd class) Proven strategies to communicate with families, clients, and supervisors (2nd class, 3rd class, and 4th class) Helping others and ourselves with loss and grief (3rd class) Keeping ourselves from burning out (4th class)

Cognitive Impairment Diminished “brain power” as a result of temporary or permanent physical changes in the brain or body

Cognitive Impairment Examples: someone who is really drunk: temporary cognitive impairment someone receiving a shot of morphine or an anesthetic before an operation: temporary cognitive impairment severe head trauma after a car accident: may have aspects of both temporary and permanent cognitive impairment Most people tend to link cognitive impairment exclusively with dementia. We offer the different types of cognitive impairment, which comprise a spectrum from mild temporary to profound permanent.

Cognitive Impairment Difference between “diminished capacity” for judgment and cognitive impairment Example: someone with a mental illness may be able to tell you the day, date, president of the US. No evidence of cognitive impairment. Diminished capacity refers to a person’s limited ability to make reasonable and prudent decisions. Decision making ability encompasses insight and judgment, that is, the ability to first comprehend all potential consequences from a decision, then to balance the impact of those immediate and future consequences on one’s life as well as others’, and finally, to make the actual choice.

Cognitive Impairment BUT, the person with diminished capacity may be unable to link the “cause and effect” of his or her actions. May not understand, or grasp, the link between an action, such as stopping his or medication, and the end result, a complete break with reality and the harming of another person

Cognitive Impairment A person can have both cognitive impairment and diminished capacity for judgment A person can have some cognitive impairment but still retain capacity for judgment, depending on the circumstances We refer to an article [Sansone, P., Schmitt, L., Nichols, J., Phillips, M., & Belisle, S. (1998). Determining the capacity of demented nursing home residents to make a health care proxy. Clinical Gerontologist., 19, 35-50.] in which researchers measured the consistency of decisions made by elders with dementia who resided in a nursing home. Thirty-nine percent of these elders with dementia demonstrated consistent decisions, compared with counterparts without dementia.

EXERCISE 2: WHAT ARE YOUR EXPERIENCES CARING FOR PERSONS WITH EITHER/OR COGNITIVE IMPAIRMENT, DIMINISHED CAPACITY? Exercise 2: We allow participants 15-20 minutes to discuss this question within small groups of 3-4 people. The objective of this exercise is to help them realize that they have cared for persons with both cognitive impairment or diminished capacity. After the small group discussions, we ask representatives from each group if they want to share anything with the group at large. When working with multiple off-site groups using video teleconferencing, as we often did, the sharing by smaller off-site groups with all of the groups helped everyone to feel included. We also discovered that the personal care assistants had universal stories, regardless of whether they worked in a population-dense and culturally diverse metropolitan area or an isolated rural town. The universal stories helped cement the group dynamics among the participants. Often, different PCAs could offer solutions or options to problems posed by other PCAs more readily than us, the “experts.”

Delirium Impaired consciousness, attention, cognition or perception Develops acutely, often fluctuates over the course of the day and is attributable to an organic disorder May include concentration deficit, hallucinations, illusions, drowsiness, or hyperalert behavior Rita Jablonski often had the clinical experience of working with elders given a diagnosis of “dementia” when in fact, they were suffering from delirium. We wanted to make the distinction between the two because elders newly admitted to home care from the hospital often are still suffering from the effects of delirium but are labeled as having dementia. Also, it is not uncommon to see a person with dementia present with delirium as a result of infection, dehydration, or medications.

Delirium Evidence that a drug, acute illness or metabolic disturbance is present that could explain the change in cognition. May take 3 months to resolve Often mistaken as dementia—person never “loses” the diagnosis of dementia, no matter how clear minded the person becomes after the delirious episode

Dementia Dementia is an all-inclusive term that refers to global confusion and forgetfulness. It is gradual in onset and proceeds at a slow rate. It is irreversible Can be aggravated by depression Key points to iterate to participants: 1. Dementia does not “get better.” 2. Dementia is slow and progressive.

Dementia Associated with many diseases Is not a ‘normal’ part of aging Alzheimer’s Disease Cardiovascular disease Atherosclerosis Cerebrovascular accidents (CVA or stroke) AIDS Is not a ‘normal’ part of aging Dementia does not solely arise in persons with Alzheimer’s Disease; it is a component of many diseases and illnesses. The ones listed on this slide are the most likely etiologies of dementia that a caregiver will encounter in home care. Although not a normal part of aging, the myth still persists among elders themselves, the general population, and (unfortunately) even among some health care providers.

Communicating with Clarity and Respect Communication is a two way event Listening is an active event Listening actively is one way to demonstrate respect. In order to make a smooth transition from the dementia piece and communication, we recommend a statement such as, “Caring for persons with any type of cognitive impairment is not easy. By improving our own communication skills, we can often avoid some of the disruptive behaviors we see when caring for persons with cognitive impairments. Plus, good communication skills will serve us well when we are in the middle of difficult situations with family members or supervisors.”

Communicating with Clarity and Respect Listening actively requires letting the speaker know that s/he was heard and understood. Listening actively requires direct eye contact, sometimes standing or sitting still, verbal and non verbal gestures, sometimes writing a note about what is being said, taking turns, not interrupting. Listening is very important. We often do not really listen, we are already rehearsing mentally our responses to our interpretation of what the speaker is relaying to us. By listening actively, we can avoid the pitfall of tuning out.

Communicating with Clarity and Respect Listening actively let’s the speaker know s/he is worth listening to. When speaking to older individuals assess the level at which you must project, don’t assume everyone has hearing loss and therefore presume to shout at them.

Communicating with Clarity and Respect When speaking to older people be certain that side noises (e.g., TV, radio, traffic noise, other people speaking at the same time) do not interfere with the person’s hearing. Sometimes with older people their ears will hear background noise just as loudly as they hear the person sitting right in front of them. Address older individuals with respect in tone and language. Many of the hearing devices simply magnify all sounds without filtering.

Communicating with Clarity and Respect Use language of their day, not the most hip new slang. Assertive language is plain and clear – and respectful of feelings. All of us need to be careful of slang, idioms, and potentially vulgar words. Words and their meanings change over times. Words that to us may have lost their “shock value” or that have been subsumed into polite conversation may still retain their vulgarity with another generation. One possible example: think about the words one hears on morning radio. Were those words acceptable 20 years ago? Another example: ask the participants about words they have heard their children or grandchildren use, and if they understood those words. Conversely, have participants ever been confused by a term, word, or expression employed by an older adult?

Communicating with Clarity and Respect Assertive language does not suggest or imply – it is direct but is respectful of feelings. We usually role play at this point, demonstrating examples of assertive versus not assertive versus aggressive. For example, we demonstrate a possible interaction between a PCA and a family member. The PCA has arrived at 8:15 am, and the family member was expecting her at 8 am. Aggressive: Family member: “Geez, you are late! What is your problem? I’m going to be late for work and it is going to be YOUR problem!” We point out how the aggressive tone and content puts the PCA on the defensive and may escalate the interaction. Not assertive: family member does not confront the problem directly, but makes side comments or encapsulates the interaction with pointed humor or uses sarcasm (can be a combination of several non assertive techniques): “Wow, you must be on central time.” “Hey, glad you finally made it. Rode the horse and buggy today instead of the bus?” Or family member does not say anything but the behavior demonstrates anger, such as slamming objects, ignoring the PCA, or mumbling comments. Assertive: “I am concerned (or upset) because it is 8:15 and my understanding was that you are supposed to arrive at 8 am.” The speaker then has a couple of options, such as checking information for accuracy (“Is my understanding correct?”) or providing additional information (“If you are late and I am late, I am afraid I’ll get in trouble at work.”) We emphasize also, the way the speaker makes the above statements (on upcoming slide)

Communicating with Clarity and Respect Avoid “opposite speak.” Opposite speak is when one uses sarcasm to by saying the opposite of one’s true feelings in an attempt to express one’s true feelings. (e.g., I really enjoy being spat on by people, it just makes my day!) If what you really mean is that you don’t like being spat on then just say, “I don’t like to be spat on.” We have several other amusing examples. We feel out our groups to determine which examples would best convey the information in the funniest but least offensive fashion. We encourage presenters to think about their own experiences with opposite speak, or to ask participants to share theirs.

Communicating with Clarity and Respect Respectful tones and words are as important during conflict as during harmony. Use gestures if necessary to aid in communication. This slide is the proverbial, “It isn’t what you say it is how you say it.”

INTERACTIVE PRACTICE IN FISH BOWL FORMATS AT EACH SITE (20 minutes) Purpose: to practice active listening techniques, assertive language vs. aggressive language, plain speak vs. opposite speak, respect in tone and choice of words. We usually ask participants to respond to a particular situation that is problematic and has already been raised during previous sharing opportunities. Presenters may want to refer to the initial exercise, when participants shared their learning objectives. Some scenarios we have used include: family members who request more (or inappropriate) tasks to be performed by the PCA outside of the PCA’s contractual obligations; suspicions of elder abuse; rude or disrespectful family members; clients requesting inappropriate tasks or tasks outside of the PCA’s contractual obligations. One item we have learned here from the PCAs, and have incorporated into our presentations, is the difficulty of being assertive when one is being manipulated. For example, it is often easier to be assertive when the person involved is unpleasant or just not very nice. When the PCA feels sorry for the client or family member, or the client or family member is extremely pleasant and nice (but has difficulty with boundaries), the assertiveness is important but may be difficult to achieve.

INTERACTIVE PRACTICE IN FISH BOWL FORMATS AT EACH SITE (20 minutes) Two volunteers in each fish bowl are critiqued by the remainder of the group at each site. Then each site reports to all other sites and to presenter about their experiences and observations in the exercise (25 minutes). Debriefing: We ask a spokesperson for each site (if the sites are large, then a spokesperson for each group) to share what they learned, what they thought was easy or hard about the exercise. We would suggest that each spokesperson be thanked, and some type of affirmation be shared with each group, such as, “That probably was not easy but it sounds like you handled it well.” “Thank you for sharing that with us. That took a lot of courage.” Some of the interactions will be humorous. It is OK to laugh, as long as you make it clear that you are laughing at the incident, not at the people involved---say so. Often, one of us will chuckle because we have had a similar experience or we had an incident that we did not handle well. It is OK to share that with the group. During one workshop, Dr. Jablonski drew appreciative laughter (and conversely, credibility) because she shared an experience in which all of her communication techniques “just flew out the window” during one very emotional and difficult confrontation at her clinical site. “Here I am, sitting in front of all of you explaining this stuff, and I essentially broke nearly every rule in that situation.” She explained that she decided to share the anecdote because “no one is perfect, no matter how hard we try, we will be in situations that we, in retrospect, could have handled better. This is lifelong learning, everyone.” While we don’t recommend that type of candor in every situation, presenters have to rely to some extent on their judgment as to whether sharing is appropriate.

Person Centered Care for Everyone Although people with specific problems, such as stroke or ADRD, have some things in common, important to tailor the care to the needs of the individual Important to keep the person at highest level of functioning Helps to prevent, slow decline We recommend that you review the recommended reading for this section.

Person Centered Care for Everyone Reduces disruptive behavior Preserves the person’s dignity Makes the person a partner in his or her care Improves the person’s quality of life

Principles of Person Centered Care Challenge the “baseline” When you walk into a person’s home, the family and/or nursing supervisor has already told you want the person cannot do and what the person needs. Ask yourself over and over again—does it have to be this way? What can change? How can the situation be improved?

Exercise 3: challenging the baseline (30 MINUTES) Here is the exercise. Make sure it is printed out on separate sheets for your participants. Module 1, Exercise 3: Challenging the Baseline    You are assigned to Joseph Schmitt, an 82-year old male. You are told that he is incontinent and wears diapers. While caring for him, he asks to use the bathroom. His daughter overhears him talking to you, and says, “He always asks but we just tell him to go. It is too much for my mother and me to keep taking him into the bathroom.” What other information would you like to have in order to come up with ideas? What can you do? What can you suggest?  Who would you have to contact at your facility to implement, or put into action, your ideas?  Your second client is Edna Katzinger, a 64-year old lady who just came home from the hospital after having a stroke. She sits all day in a wheelchair. Her husband tells you, “The physical therapist says she should be able to walk, but I am afraid she will fall and break her hip. It is easier to just let her sit in the wheelchair.” What other information would you like to have in order to come up with ideas?  What can you do? What can you suggest? Who would you have to contact at your facility to implement, or put into action, your ideas? There are no right or wrong answers. Depending on the size of your group(s), you can either have participants work singly for 15 minutes and then allow 15 minutes for sharing, or have them work in small groups and then share. The whole point of this exercise is to allow the participants to consider how they can concretely put the information learned into practice.

Assessing the Baseline, and Communication Strategies for Challenging the Baseline: Conduct a quick baseline assessment. Some of the things to look for are: Is the person in a wheel chair? Is the person restrained? Does the family speak for the person as if s/he can’t speak?

Assessing the Baseline, and Communication Strategies for Challenging the Baseline: Can s/he speak, and answer questions if allowed to? Is the house in good order such that if the person wanted to walk s/he would not be likely to fall over things? Is the floor carpeted? If yes, it is too thick for the person to walk on safely? Is the person able to attend to ADLs if given slight or moderate assistance?

Principles of Person Centered Care If yes, does the family treat him or her as if s/he is somewhat capable or do they do too much for the person to an extent that it enables his/her skills to deteriorate?

Principles of Person Centered Care Is the environment in the house quiet enough to allow for conversation with the person without background noise or music competing with what is being said (remembering that background sounds are often perceived as equal to foreground sounds in some elderly people)? Is the lighting in the house sufficient to allow the person to see optimally?

Principles of Person Centered Care Does the family treat the person with respect when speaking to or about him/her? Does it appear that the family is complying with the orders of the doctor or nurse practitioner? If things are not going well, ask yourself what the nature of the problem really is.

Principles of Person Centered Care Some examples: Person can walk, but there is evidence of restraining. Person can speak when spoken to but it takes a while for him/her to get the words out, so the family blurts out the answer in advance.

Principles of Person Centered Care Lights in the house are all off, and the family doesn’t seem to notice. Discuss with the participants what the underlying problems could be in these examples. Seek other examples from participants. You may want to jot down notes about these examples for an upcoming slide.

Principles of Person Centered Care After making a baseline assessment, considering how things might be made better, thinking about what the true causes of the problems might be, consider how to speak to the family about it.

Role play with fellow presenter Our turn: we will employ assertive language, aggressive language, and opposite speak. Please give us comments about how it was handled. We kept a list of the scenarios offered earlier regarding person centered care. If many were offered, we asked the participants to choose the one they most wanted to see illustrated. It is usually easier to do the “wrong” things first. We usually demonstrated aggressive and opposite speak first and ended the role playing with assertive communication techniques. Our handling was not always perfect, and more than one time, we made mistakes. We never rehearsed these role playing events, and we were being videotaped at the same time. If we goofed, we used our mistake as an example of nerves or feeling under pressure—not unlike the same challenges our participants may experience as they attempt to handle problems using newly learned techniques.

Revisit exercise 3: Using some of the communication strategies just learned, how would you handle those 2 scenarios? (30 minutes) We found that participants were very willing to critique themselves and to demonstrate insight into their behaviors. For example, one participant told the group, “I always found myself getting defensive with this one family member. Now I know why, I was responding to her nonverbal behaviors. Now that I know what is going on, I feel ready to handle the problem this time.”

Promote decision making Give clients as much REALISTIC choice as possible, within their abilities Helps clients retain personal power and dignity Emphasis on REALISTIC. Examples of realistic choices could be the red sweater or the blue sweater. Another communication habit we notice in many caregivers, including ourselves at times, is the addition of the word, “OK?” or “alright?” when we are communicating with others. Not a good habit, because it indicates choice when there is usually none. For example, “I’m going to get you out of bed now, OK?” If you are making sure the person is ready because they need to splint an abdominal wound, the permission seeking modifier on the end of the sentence is acceptable. If you have to get the person out of bed whether or not they like it, you may be setting yourself up for an argument.

Promote decision making Shows that you care Have client do as much care as possible Explain to client that doing as much for themselves keeps their bodies working properly (e.g., finger strength, hand coordination) Many PCAs shared stories of clients not willing to do any self care because the clients believed they were paying the PCA to do everything.

Promote decision making Encourage client to use adaptors Sometimes it is faster and easier to do it yourself, but you are not helping your client in the long run Make sure the environment is best suited for the needs of your client

Promote decision making Does your client like all of the stuffed animals on his or her bed, or did the family members place them there because they like them? Does your client really need the 12 crocheted afghans on her lap or on his bed?

Common behaviors in dementia

Non-aggressive Moaning, repetitious words or sentences Wandering, rocking

Aggressive Yelling, cursing, screaming Hitting, spitting, biting Paranoia is not uncommon, especially when the person with dementia is trying to make sense out of the environment or situation.

Continuum of Behavior In early stages of dementia, the person knows that something is wrong. In later stages, the person does not know that something is wrong, and blames other people for missing items, changes in the routine, etc.

Sexual Behavior Sexual behavior, such as masturbating in public is also not uncommon. Sexuality is present in aging and disabled persons, and the confused person is often seeking sexual solace.

Sexual Behavior Persons with dementia may confuse another resident for a spouse or may forget they were ever married. Inhibitions are removed, which explains why sexually inappropriate behavior may occur in public.

Disruptive Behavior as a method of communication Several researchers have developed two models to explain the disruptive behaviors associated with dementia Need-driven, Dementia-compromised Behavior Model (Ann Whall, University of Michigan & Anne Kolanowski, Pennsylvania State University) We would encourage presenters to read the following articles referenced on this slide: Whall, A. L. (1999). The measurement of Need-Driven Dementia-Compromised Behavior: achieving higher levels of interrater reliability. Journal of Gerontological Nursing, 25, 33-37; Kolanowski, A. M. & Whall, A. L. (2000). Toward holistic theory-based intervention for dementia behavior. Holistic Nursing Practice, 14, 67-76.

Disruptive Behavior as a method of communication All behaviors, no matter how distasteful, are the result of the clients’ response to some emotion or fear.

Disruptive Behavior as a method of communication Clients with dementia have difficulty interpreting stimuli and may react with violence if they believe that they are being harmed. It is important to realize that the person with dementia does not exhibit disruptive behavior because they choose to, but the behavior is the result of the dementia—communication patterns are altered by the disease causing the dementia

Progressively Lowered Stress Threshold (Hall & Buckwalter, University of Iowa) Disruptive behaviors are the result of the client’s inability to tolerate noises, activities, or changes in the environment. They have a reduced ability to filter out unimportant stimuli, so they are bombarded with everything equally. This is a second theory that is helpful explaining disruptive behavior in people with dementia. We would suggest reading the following article: Hall, G. R. & Buckwalter, K. (1987). Progressively lowered stress threshold: a conceptual model for care of adults with Alzheimer's disease. Archives of Psychiatric Nursing, 1, 399-406.

Assessing reasons for disruptive behavior Misinterpretation of surroundings Persons with dementia have limited capacity for learning new information. Even though they are told several times, “this is the bathroom,” they may still misinterpret the surroundings and may react with fear Vision and hearing impairment may further create problems with correct interpretation

Assessing reasons for disruptive behavior Pain and painful procedures May be aggravated by clients who are resistant to taking medication and may not receive their pain medications

Assessing reasons for disruptive behavior Stress Sensory overload Meaningless noise

Assessing reasons for disruptive behavior Desire for immediate attention Loss of control/autonomy Fatigue Desire for sexual intimacy Change in routine Psychiatric co-morbidities

Respectful Communication: Talk to Me, Not at Me

Strategies for coping with disruptive behavior Determine antecedents to the disruptive behavior

Strategies for coping with disruptive behavior This may be challenging because the cause may not be immediately apparent, and the cause may not always be consistent (i.e., whatever caused the disruptive behavior yesterday may not cause disruptive behavior today). A pattern needs to be determined.

Strategies for coping with disruptive behavior Important for staff to discuss what they believe precipitated the disruptive behavior. Bathing is a usual antecedent. If water is near the face or head of a confused person, he or she may react in an aggressive manner

Strategies for coping with disruptive behavior Have the client control the flow of water (e.g., using a hand-held shower head to direct the flow of water) Let the client get into the tub slowly Approach client in a relaxed manner

Strategies for coping with disruptive behavior Less likely to provoke agitation. If one approaches a confused person in an authoritarian or “bossy” manner, the client may react in an unfavorable way. Avoid being focused solely on the task: “Hello Mrs. Jones, how are you? Here, let me help you get this dress on. How’s that?”

Strategies for coping with disruptive behavior “Hello, Mrs. Jones. I’m going to help you get dressed.” The second approach will more likely result in agitation than the first approach. Sometimes, the client does not understand what is expected of him or her with a specific task, and may become frustrated and act out.

Strategies for coping with disruptive behavior It is a good idea to talk to the client about personal things of interest to him or her during tasks (e.g., grandchildren, previous occupation, favorite activities) Be flexible in approach with client The use of gestures and pantomime to show the client what you want him or her is helpful

Strategies for coping with disruptive behavior Do not limit your conversation to the client because of the confusion. “Chatting away” with the client has been shown to improve agitated behavior. The client may respond to the verbal stimulation.

Strategies for coping with disruptive behavior However, when asking the client to do something, use short, one-step REQUESTS, not commands. Do not keep repeating the same request, otherwise the client may become agitated Show interest in the client, both verbally and nonverbally A happy medium needs to be reached between repeating enough to remind the client and repeating too much and agitating the client. If the client starts to get agitated, one needs to back off and change tactics. Return to the task at hand in 15 minutes.

Avoid interruptions Studies have shown that interruptions resulted in increased agitation and tension on the part of the client and decreased flexibility and personal contact on the part of the nursing assistant. See: Ragneskog, H., Gerdner, L. A., Josefsson, K., & Kihlgren, M. (1998). Probable reasons for expressed agitation in persons with dementia. Clinical Nursing Research, 7, 189-206. Richter, J. M., Roberto, K. A., & Bottenberg, D. J. (1995). Communicating with persons with Alzheimer's disease: experiences of family and formal caregivers. Archives of Psychiatric Nursing, 9, 279-285.

More Strategies Remember not to take aggression personally, unless you have deliberately done something to provoke the client, it is not your fault! Praise the client in an adult-like manner. Have manipulatives in the environment Manipulatives are items that the client can handle. These items should have meaning to the client, such as large blunt knitting needles for a client who used to knit. The manipulatives need to be safe.

More Strategies In the home environment, encourage families to have items available that are associated with activities that the client previously enjoyed. One family kept jumbo blunt knitting needles and bits of yarn in a basket for their grandmother, who was an avid knitter prior to the dementia. She derived comfort from sitting and holding the items in her lap.

More Strategies Use touch judiciously Some clients respond well to touch; others may react negatively. Find what works with your clients.

More Strategies If the client is already agitated, touching in a forceful manner may escalate the agitation Remove client from the disruptive area, if possible If the client is engaging in sexually inappropriate behavior (e.g., masturbating in public), will need redirection.

More Strategies Depending on the severity of the client’s dementia, you may be able to encourage him or her to refrain from this behavior in public and to engage in it in a private area. Distraction Humor or playful responses may divert the client’s attention from the discomforting situation and may stop the aggressive behavior Keep clients busy Use caution with humor. Humor is very subjective. The client may misinterpret humor as a jibe or insult.

Care Planning Meetings How can PCAs participate? By identifying clients who engage in disruptive behavior Direct care providers know the client the best and are best qualified to provide this information By identifying triggers to disruptive behavior By sharing proven interventions that work in preventing disruptive behavior, and asking that those interventions be included on the care plan. Offer examples: “I noticed that he becomes upset if the TV is on. When we shut off the TV, he calms down.

Concluding Exercise: Ask participants to state the most important item learned today and how they plan to use that item on the job before the next class