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Dementia Care for America’s Heroes Part 3: Recognizing changes & progression of the disease

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. Brain atrophy. Brain actually shrinks Cells wither then die (darker color)

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Dementia Care for America’s Heroes Part 3: Recognizing changes & progression of the disease

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  1. Dementia Care for America’s HeroesPart 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. 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” Level 5 - Routines & Repeats

  11. 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 Level 4 - Task Oriented

  12. 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 Level 3 - Exploring

  13. 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 Level 2 - Stuck on GO or STOP

  14. 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” Level 1 – Reflexes Rule

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

  16. 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

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