1. Dementia Care for America’s Heroes Part 3: Recognizing changes & progression of the disease Presented by Heather McKay, MS, OT/L, Dementia Care Specialist NASVH 2013 Summer Conference September 3, 2013

2. Brain atrophy  Brain actually shrinks  Cells wither then die (darker color)  Sick cells are unreliable  Fluctuation happens at all levels  Some types of dementia are predictable while others are “patchy”  Each person’s experience is individual

3. Memory Loss  Losses Situational memories Immediate recall Relationships Motor memories  Preserved abilities Long ago memories Confabulation (re-writing history) Emotional memories

4. Understanding  Losses Information words Explanation of the facts  Preserved abilities Understands facial expression Understands tone of voice Understands gestures May act like she understands when she doesn’t

5. Language  Losses Can’t find the right words Can’t explain the situation Vague language Single phrases Sounds & vocalizing Can’t make needs known  Preserved abilities Singing Automatic, social speech Swearing/sex words/forbidden words

6. Impulse & Emotional Control  Losses Social graces aren’t what they used to be Think it - say it Like it - do it See it - take it  Preserved Desire to be respected Desire to be in control Holding on to feelings

7. Measuring with different tools  3-level: Early, Middle, Late  7-level: Global Deterioration Scale  5-level: Cognitive Disabilities Scale (Allen Cognitive Levels)

8. Progression of Cognitive Loss  Many assessment tools  What is lost & retained  What is typical behavior  What helps & works  Levels 5-1

9. Progression of the disease  6 is normal-that’s you!  5 is earliest stage and 1 is the lowest at the end of the disease  We’ve all been a 5  Stress UP>brain function DOWN

10. Level 5 - Routines & Repeats  Earliest signs of change  Repeats stories  Logic problems  “My way”  Very ‘independent’ or seeking constant reassurance  Resents take-over  Confused about the schedule  Can follow prompts and reminders  Has trouble with new routines and locations  Becomes anxious and frustrated easily  Tries to maintain control & social behavior  Routine, routine, routine  Caregivers learn to say, “I’m sorry, you’re right”

11. Early Diagnosis  Failure to ID safety issues family disasters $$$ disasters misdiagnosis untreated problems fear & stress panic  Early Detection drugs work better personal planning decision making $$$ planning treat the treatable counseling & support

12. Level 4 - Task Oriented  Wants to “just get it done”  Has trouble sequencing the steps  Skips steps  Believes they can do it  ‘Don’t need your help’  Information language is poor  Has a mission in mind  Can’t find the bathroom, so he urinates in the floor  Can follow simple gestures and demonstration  Uses visual information to figure out what to do  Asks the same question again and again  High risk for elopement  Needs a good caddy  3 C’s of level 4: Coverage Communication Car

13. Level 3 - Exploring  Needs step-by-step guidance for personal care  Needs hands-on help to get started or go from place to place.  Follows demonstration and hand- under-hand guidance  After a few steps, the person may be able to continue on their own-for a few minutes  Hands are busy touching, handling everything  Will not recognize others’ space or belongings  Will strip clothes when it’s hot!  Imitates actions, repeats actions over and over  Follows others & caregiver  Does activities that look or sound or taste good  Leaves places or activities that are TOO busy or crowded  May taste or eat what they see  Has trouble transitioning between activities  Sleep cycle changes  Hand-under-hand position

14. Level 2 - Stuck on GO or STOP  Automatic actions only  May carry items, rub/ pat/clap with hands  Limited visual processing  Very limited communication skills  Can’t get started, then can’t stop  Imitates your general movements  Can’t grade strength  Better with rhythm and repetitive movements  Needs hand-under- hand for self care and walking  Poor appetite, eats and drinks less  Sleep cycle changes

15. Level 1 – Reflexes Rule  Bed bound or chair bound  Sleeping more  Looks or listens at times, when awake  Holds objects or rubs/claps/pats with assistance  Responds to massage, stroking, smells, colors, lights- inconsistently  Lots of reflexes  Grabs/grasp but can’t let go  Needs maximum help to do all self care and transfers  May vocalize sounds for pleasure or stress  May make facial grimaces  Muscles shorten  May feel stiff and sore  Difficulty swallowing  Difficulty fighting infections  High fall risk when out of bed  Sensitive to familiar, calm voice  Breathing changes  Moments of being present  “We are following his lead”

16. Detective work at every level  Supporting people as they change  Mobility problems?  Pain?  Sensory problems?  Mental health issues?  Other diagnoses of importance?

17. Believe People with dementia are doing the BEST they can! Contact Information Heather McKay Partnerships for Health www.pfhnc.com Click “contact us” (919) 260-5986 heather@hospiceac.org Video Training Tools: Dementia Care for America’s Heroes Order online at www.pfhnc.com