Seeing the Person, Not the Illness

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

2. Why are you here?

3. 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)

4. 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)

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

6. 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

7. 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.

8. 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

9. 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

10. EXERCISE 2: • WHAT ARE YOUR EXPERIENCES CARING FOR PERSONS WITH EITHER/OR COGNITIVE IMPAIRMENT, DIMINISHED CAPACITY?

11. 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

12. 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

13. 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

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

15. Communicating with Clarity and Respect • Communication is a two way event • Listening is an active event • Listening actively is one way to demonstrate respect.

16. 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.

17. 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.

18. 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.

19. 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.

20. Communicating with Clarity and Respect • Assertive language does not suggest or imply – it is direct but is respectful of feelings.

21. 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.”

22. 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.

23. 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.

24. 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).

25. 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

26. 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

27. 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?

28. Exercise 3: • challenging the baseline (30 MINUTES)

29. 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?

30. 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?

31. 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?

32. 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?

33. 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.

34. 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.

35. Principles of Person Centered Care • Lights in the house are all off, and the family doesn’t seem to notice.

36. 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.

37. 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.

38. Revisit exercise 3: • Using some of the communication strategies just learned, how would you handle those 2 scenarios? (30 minutes)

39. Promote decision making • Give clients as much REALISTIC choice as possible, within their abilities • Helps clients retain personal power and dignity

40. 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)

41. 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

42. 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?

43. Common behaviors in dementia

44. Non-aggressive • Moaning, repetitious words or sentences • Wandering, rocking

45. 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.

46. 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.

47. 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.

48. 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.

49. 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)

50. 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.