Working with People with Dementia and Other Cognitive Impairments

1. Working with People with Dementia and Other Cognitive Impairments Terry R. Barclay, Ph.D. Clinical Neuropsychologist

2. Background • Neuropsychologist • Training: UCLA School of Medicine • Specialist: Aging/Dementia • HealthPartners Neurology • Alzheimer’s Research Center • Independent practice, Edina • Practice: • Cognitive/Psychological evaluations • Medical/Legal cases • Geriatric consultation • Psychotherapy

3. Objectives • Signs, symptoms, and stages of common forms of dementia • Strategies for early recognition and assessment • Effective interview and communication techniques • Tips for intervention and referral

4. Normal (Healthy) Aging • Characteristic pattern: • Sensory declines (i.e., hearing, vision) • General slowing of information processing • Intelligence remains stable • Mild decrease in: • Ability to recall names of people, places, objects • Mental flexibility • Memory • Independence in daily activities preserved

5. What is Dementia? A disease of the brain that causes a decline in memory and intellectual functioning from some previously higher level of functioning severe enough to interfere with everyday life. Dementia is NOT normal aging

6. Common Signs of Dementia • Memory loss • Newly learned information vs. old memories • Disorientation to time, place, and people • Language problems • Diminished concentration • Visual-spatial and perception problems • Sense of direction • Difficulty with complex tasks and learning new concepts • Problems with abstract reasoning, problem-solving, judgment • Changes in personality / mood / behavior

7. How is Dementia Diagnosed? • Complete medical history • Physical exam • Neurological exam • Lab tests • Neuroimaging (CT, MRI) • Mental Status exam • Neuropsychological testing • Functional assessment of ADLs and IADLs • OT/PT evaluation No single test can diagnose Dementia

8. Dementia vs. Alzheimer’s What is the difference between dementia and Alzheimer’s disease?

9. Flowers Pansies Mums Tulips Daisies Roses

10. Dementia Frontotemporal dementia Parkinson’s dementia Vascular dementia Lewy body dementia Alzheimer’s dementia

11. Alzheimer’s disease CVA/Stroke Parkinson’s disease Traumatic brain injury HIV/AIDS Multiple Sclerosis Huntington’s disease Lewy Body dementia Frontotemporal dementia Creutzfeldt-Jakob disease Toxic exposures (industrial strength solvents/chemicals) Chronic hypoxia Lyme disease Syphilis Brain tumors Normal pressure hydrocephalus Wernicke-Korsakoff’s Syndrome Many Causes of Dementia

12. Alzheimer’s Disease is One Type of Dementia

13. Alzheimer’s Disease Is: • A progressive, degenerative, neurological disease of the brain • A steady decline in memory and cognitive functioning severe enough to interfere with everyday life • Related to specific chemical and structural changes in the brain • NOT reversible

14. Alzheimer’s Disease: What does it look like? • Neurofibrillary tangles • Amyloid plaques • Decrease in chemicals that facilitate memory • Cell death

15. Video Clip • What is Alzheimer's Disease?

18. Progression of Alzheimer’s Disease • Early Stage: 2 - 4 years in duration • Middle Stage: 2 - 10 years in duration • Late Stage: 1 - 3 years in duration

19. Early Stage AD • Forgetfulness • Trouble multi-tasking • Writes reminders, but loses them • Personality changes • Shows up at the wrong time or day • Changes in appearance • Preference for familiar things

20. Middle Stage AD • Fluctuating disorientation • Diminished insight • Learning new things becomes difficult • Declining recognition of acquaintances, distant relatives, then more sig. relationships • Mood and behavioral changes • Functional declines • Alterations in sleep and appetite • Wandering

21. Late Stage AD • Severe disorientation to time and place • No short term memory • Loss of speech • Difficulty walking • Loss of bladder/bowel control • No longer recognizes family members • Inability to survive without total care

22. Video Clip • Frontotemporal Dementia

23. Why is Recognition Important? • 5.1 million Americans have Alzheimer’s disease (AD) • New case every 72 seconds • 1 in 8 people over 65 • 1 in 2 people over 85 • Approximately 50% are never diagnosed • Almost 10 million people in U.S. caring for a person with AD or related dementia (Alzheimer’s Disease Facts and Figures 2007 published by the Alzheimer’s Association www.alz.org)

24. Why is Recognition Important? • Crisis-driven utilization of healthcare services • 1/3 of people with dementia require hospitalization each year • Support and interventions ARE available: • Medication • Environmental/safety adaptations • Community programs • Family education and support (Silverstein & Maslow, 2006; U.S. Centers for Medicare and Medicaid, 2000)

25. What Makes Recognition Difficult? • Poor understanding of healthy aging • Baseline variability in education, intelligence, personality factors • Lack of insight = not seeking help • Clinician fear of damaging relationship • Erroneous belief that “nothing can be done”, “no good medication treatment”

26. Recognition Triggers • Poor historian • Deferring to spouse or family/friends • Tangential, circumstantial responses • Losing track of conversation • Talking only about topics they know well • Repeats questions or other information • Difficulty following instructions

27. Recognition Triggers • Seems unable to adapt to change or experiences functional difficulties under stress • Poor hygiene • Poorly maintained home • Reduced intake of fluid/food • Inappropriate clothing, behavior, speech

28. Objective Assessment • Subjective interviews often FAIL to detect dementia until later stages • Mental status – Intact older adults should be able to: • Describe 2 current events in some detail • Describe what happened on 9/11, New Orleans disaster, etc. • Name the current President and 2 immediate predecessors • Describe medical history and names of some medications

29. Objective Assessment • Brief objective measures: • Mini-Cog • Mini-Mental State Exam (MMSE) • St. Louis University Mental Status Exam (SLUMS) • Montreal Cognitive Assessment (MOCA) • Free online, public domain (except MMSE) • Do not have to be an MD, PhD, or RN

30. Assessment Tips • Do NOT • allow patients to give up prematurely or skip questions • deviate from standardized instructions • offer multiple choice answers • bias score by coaching • be soft on scoring • Score ranges already padded for normal errors • Deduct points where necessary (be strict)

31. Mini-Cog

32. MMSE

33. SLUMS

34. MOCA

35. How to Facilitate Diagnosis • Follow your instinct, use objective assessment whenever possible • Encourage wellness “check-up” with primary doctor • Ask family members to: • Write down main concerns • Accompany person to doctor’s visit • Push for formal memory testing in office • Ask for referral to neurologist, if needed

36. Medication interaction Urinary retention Infection (UTI, pneumonia) Fecal impaction Dehydration Uncontrolled blood sugars Unrecognized pain Sleep deprivation Immobility “Rapid Onset” Confusion

37. Communication & Interviewing Techniques • Morning typically best • Familiarity helps those with dementia feel safe and comfortable • Rapport building • Heightened sensitivity to other people’s moods, feelings, body language and tone of voice • Warm smile, relaxed demeanor, sense of humor • Person needs reassurance and understanding in order to feel comfortable • Withholding judgment builds trust

38. Setting The Stage • Ask all family, caregivers, and others to leave the room • Begin with simple orienting information • Ask how person likes to be addressed • Indicate that your visit is a friendly one • Speak in a low conversational tone • Move one step at a time

39. Setting The Stage • Scan the environment, reduce distractions • Ask to turn off TV or radio • Ask to close windows to traffic noise • Assistive devices • Strongly encourage use of hearing aids, glasses, or dentures, if they have them • Avoid raising your voice as this can increase feelings of intimidation and fear

40. Setting The Stage • Build rapport until person shows softer facial expressions, relaxed body language • Posture • Face the person squarely and look them in the eyes • Ask permission to sit near them to be at eye level • Never tower over head

41. The Interview • Relax • Smile, use sense of humor • Project a casual and laissez faire demeanor • Listen • Helps to gain more information, increase trust, reduce conflict • If trouble finding words, offer examples

42. Communication Strategies • Validation • Most people do not spend enough time doing this • “Join their team” • Express directly that person’s thoughts and opinions are important and deserve attention • Focus on underlying feelings • Observe emotions and body language • What is the person communicating? • Memories from the past can trigger emotions from the past • Offer emotional statements, such as “that must have been very upsetting”

43. Verbal vs. Non-Verbal

44. Communication Strategies • Slow down • Be careful to match the pace of the individual • Speak at leisurely pace, in shorter sentences • Be patient and give them time to respond • Try not to interrupt • Paraphrase • Acknowledge what the other person is saying • Be active • Enhance your message with gestures, inflection, objects • Ask for clarification when needed

45. Communication Strategies • Distraction • If the person becomes agitated, do not argue • Distract them with more pleasant, benign topic • You do not have to understand everything that is said • Interpret the emotion • Mirror their facial expressions and body language

46. Communication Strategies • Confabulation • Some individuals may make assertions that are not true to cover for memory loss • Trying to argue them out of such beliefs is usually futile because person is not lying • Circle back around to topic later • Reluctance to participate • Often fear of someone finding out how bad things are getting & losing freedoms • Help individual feel in control (e.g., join with them, acknowledge fear, offer choices)

47. Communication Strategies • Avoidance • If person begins to move away from questions, changes subject, becomes tense – go back to building rapport • Reactions to caregivers • Note reaction and comfort level when caregiver comes into room • Does the caregiver resist letting you speak with the senior alone? • Do they try to answer for them?

48. Getting People to Accept Help • Work from the familiar • Who is already a trusted part of their routine? • Which trusted person is available and willing to introduce new things? • Take small steps • Is there a way to start something as a “social visit” or “one time trial”? • Would they try it out with a trusted escort? • Could the service (or provider) come to them? • Have a good plan that is shared with all involved

49. Getting People to Accept Help • Routine is security • How can you build things into their existing structure/routine? • Reassure fears of losing control • Give control to them wherever possible through choices, opinions, being involved in decision making, etc. • Focus on their values and interests • How can you tie the service or intervention into what the person already likes or enjoys?

50. Keeping PWD at Home • Promote: • Family education about dementia • Regular (annual) visits to the doctor • Formal memory loss work-up • Empower family members to join • Increased (daily) physical activity, mobility • Regulated sleep patterns (short naps okay) • Balanced diet, frequent hydration