Advanced Skills for Dementia Care: Using the levels of cognitive function to guide communication & routines to promote safety & function in early-stage disease. Melanie Bunn, RN, MS

Normal Aging (Diamond) More forgetful More time to learn new information More time to retrieve old information Might be more of who they’ve always been or wanted to be!

Difference between aging and disease NORMAL Aging Slower to think Slower to do Hesitates more More likely to ‘look before you leap’ Know the person but not the name Pause to find words Reminded of the past For you, its worse… But, you can compensate NOT Normal Aging Can’t think the same Can’t do like before Can’t get started Can’t seem to move on Doesn’t think it out at all Can’t place the person Words won’t come – even later Confused about past versus now Can’t compensate or adapt

Mild Cognitive Impairment Is it a variation of aging? disease in its self? disease precursor? More than forgetfulness: storage not a retrieval problem (short term memory loss) More than forgetfulness: language, complex problem solving (executive function) Risk factor for dementia (50% will develop dementia in 5 years)

Mild Cognitive Impairment More than aging More than 1 area of brain function Still can do but takes lots effort and practice

Caregiving Gems Progression of dementia Cognitive Decline & Activities Hand under hand Adapted from work done with and by Teepa Snow, Melanie Bunn & Claudia Allen

Understanding the model All people with dementia are precious Levels might change depending on situation Emphasis on what people can do… not just what they can’t do

Diamonds: Living in the present Still Clear Sharp - Can Cut Hard - Rigid - Inflexible Many Facets Can Really Shine

Diamonds What still works? Do well in familiar places & situations Use old routines & habits Control important ‘roles’ & ‘territory’/maintain control Very ‘independent’ or seeking constant reassurance Can manage self care Can manage routine IADLS with supervision Can use visual cues & signage Expresses needs verbally Real? Fake? - Hard to be sure

Diamonds Where do they struggle? Has trouble with new routines and locations Place & time confusion Resents take-over Becomes anxious and frustrated easily Gets lost or confused Misplaces things Misinterprets what’s going on Word finding problems Losing ability to abstract Logic problems Lose ability to see others’ perspective May or may not have insight into losses May try to “escape”

Diamonds, How do we help? Accepted not Corrected Keep to routine & be prepared to help more with changes (traveling) If something works or seems to help, get an extra Don’t worry about the small mistakes/unusual choices For the future: – Notice how they do things now – Ask how they used to do things Cues and clues Fill in the blanks “I’m sorry, I’m so sorry, I’m so very sorry” Be willing to be the one who’s wrong (apologize) Learn how to help instead of taking over Simpler is better

Diamonds Specifics of activities They need: Familiar activities & routines with variation in specifics but not category Projects they can complete independently Opportunities to serve or volunteer Simplified…but not baby/fied versions of life-long preferred activities

CUING Visual Verbal Tactile Always cue in this order: – Visual – Verbal – Tactile With Diamonds: – Visual: move more slowly – Verbal: simply, concrete – Tactile: Follow their lead (need to touch, need to be touched

Verbal Communication What doesn’t work? Telling the truth (reality orientation) Telling lies (therapeutic lying or fiblets) Answering “yes” or “no” questions with “yes” or “no” Trying to explain, use logic, reason Ignoring the person Trying to be the one who’s “right”

What does work Establish a relationship with the person – Introduce self (my name is…and you are…) – Make casual, connecting comments & conversation Speak slow and low Simplify but don’t baby-fy Wait for response I’m sorry, I’m so sorry, I’m so very sorry

Empathetic Communication Meet them where they are Start with the feelings – “Looks like”, “sounds like” – “Seems like”, “feels like” – Don’t be afraid to talk about feelings Get more information – “Tell me about…” – Repeat words and phrases – Move to remembering Move from talking to doing – “Could you help me?” – “Would you try?” – Related to topic – Familiar and positive

6 Ps Problem Person Possible Cause Plan Practice Pass it on

What’s the PROBLEM? Is it a problem? – Recurrent – Different from usual behavior – Has a component of risk Whose problem is it? – Person with dementia – Family caregiver – Paid caregiver

What’s the PROBLEM? When does it happen? Where does it happen? Who’s around? Alone? How often does it happen? How long does it last? How does it seem to start? How does it seem to stop? What makes better? What makes worse?

Who’s this PERSON? Physical Health history & habits Disease & disabilities Sensory changes Hand dominance Pain & management Energy level Emotional Depression/anxiety (recent & remote) How do you know? What should you do? Optimist/ pessimist Personality features

Who’s this PERSON? Social Love ’em or leave ‘em (intro v extra)? Who’s important? Role in family & work Type of work & meaning Community environment Spiritual Beliefs Practices/rituals Positive/negative experiences Tolerance of others Views of life What gives safety & strength?

Who’s this PERSON? Routines ADLS Organizing the day & remote Patterns & routines, recent & remote Best time of day What’s the most important? Likes & dislikes Favorites & always liked Pet peeves & really hates What is a comfortable place like? Good manner issues

What’s the POSSIBLE CAUSE? Intrinsic factors Level of dementia Type of dementia Health care issues Sensory loss Emotional issues Spiritual distress The person and the history Extrinsic factors Physical environment Noise, sights, setting, temperature Helping approaches Approach, behaviors, words, actions, & reactions Structure of the day Pace, pattern, familiarity

What’s your PLAN? Nursing Social work Activities Rehab Dietary Housekeeping Maintenance Front desk Business Person with dementia Family Clergy Neighbors Others

PRACTICE Your Plan Give it a chance to work Watch what happens and when Make adaptations & try again

PASS IT ON If not better… REWORK If better… CELEBRATE!!!

6 Ps Problem Person Possible Cause Plan Practice Pass it on

Common Safety Issues Driving Medications Living alone Nutrition Avoid never, try not now Will you try? Avoid, forever Let the person express and talk about feelings Keep things familiar and routines the same

Issues About Routine Which is the priority? – Is the time? – Is it the order? We have to do them – They can’t keep the routines – But they need the routines Use muscle memory as much as possible

Needs of families Time away To have their perspectives accepted/respected Be included with the person with dementia To be supported – Role change – Relationship change – Decisions To be educated, the way they learn Help how to share, when to share

Summary It’s hard to tell – Is there a problem? – Who has the problem? It’s more important to be in the relationship than to be alone Get information from multiple sources Early diagnosis makes a difference – Health disparity is real – Cultural impact is real