Seeing the Person, Not the Illness

Rita A. Jablonski, PhD, RN, ANP Anthony DeLellis, PhD School of Nursing

• Why are you here?

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)

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

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.

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

EXERCISE 2:

• WHAT ARE YOUR EXPERIENCES CARING FOR PERSONS WITH EITHER/OR COGNITIVE IMPAIRMENT, DIMINISHED CAPACITY?

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

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

Dementia

• Associated with many diseases – Alzheimer’s Disease – Cardiovascular disease – Atherosclerosis – Cerebrovascular accidents (CVA or stroke) – AIDS • Is not a ‘normal’ part of aging

Communicating with Clarity and Respect • • •

Communication is a two way event Listening is an active event Listening actively is one way to demonstrate respect.

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.

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.

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.

Communicating with Clarity and Respect •

Assertive language does not suggest or imply – it is direct but is respectful of feelings.

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.”

Communicating with Clarity and Respect •

Respectful tones and words are as important during conflict as during harmony.

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Use gestures if necessary to aid in communication.

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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.

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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).

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

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)

Assessing the Baseline, and

Communication Strategies for Challenging the Baseline: –

Conduct a quick baseline assessment. Some of the things to look for are:

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Is the person in a wheel chair?

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Is the person restrained?

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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?

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Is the house in good order such that if the person wanted to walk s/he would not be likely to fall over things?

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Is the floor carpeted? If yes, it is too thick for the person to walk on safely?

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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)?

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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?

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Does it appear that the family is complying with the orders of the doctor or nurse practitioner?

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If things are not going well, ask yourself what the nature of the problem really is.

Principles of Person Centered Care

Some examples:

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Person can walk, but there is evidence of restraining.

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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.

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

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Our turn: we will employ assertive language, aggressive language, and opposite speak.

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Please give us comments about how it was handled.

Revisit exercise 3:

• Using some of the communication strategies just learned, how would you handle those 2 scenarios? (30 minutes)

Promote decision making

• Give clients as much REALISTIC choice as possible, within their abilities • Helps clients retain personal power and dignity

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)

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)

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.

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

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.

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

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

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