Caring for People with Developmental Disabilities When Dementia is Part of the Puzzle Teepa Snow, MS, OTR/L, FAOTA Dementia Care and Training Specialist Developmental Disabilities & Dementia - Other than Downs - Dementia affects about 5-10% of the ID population - somewhat younger than general population - Increases after age 50-65 - Increases if h/o head injury - Increases if family members have AD - Increases with other risk factors Downs & AD - Probably affects the vast majority of people with Downs - Due to premature aging, onset is earlier - 35-65 numbers increase dramatically - Some people will experience very rapid onset (1-3 years) - Most progression lasts 3-10 years - Frequently have other medical pxs Unique Changes - Attention losses are first - not memory - Self-care skills are damaged early - Seizures may be noted staring - Memory pxs are not the 1 st noticed - Reduced speech attempts more slurring or repetitive words - Increased stereotypical behaviors - Sensory needs & tolerances change - Behaviors change plans don t help - New info lost DEMENTIA - Recent memory worse - Problems finding words - Mis-speaks Disease Early - Young Onset Late Onset Vascular Dementias (Multi-infarct) Lewy Body Dementia Fronto- Temporal Lobe Dementias Other Dementias Genetic syndromes Metabolic pxs ETOH related Drugs/toxin exposure White matter diseases Mass effects Depression(?) or Other Mental conditions Infections BBB cross Parkinson s - More impulsive or indecisive - Gets lost - Notice changes over 6 months 1 year
Positron Emission Tomography (PET) Disease Progression vs. Normal Brains Normal Early Late Child G. Small, UCLA School of Medicine. Vascular Dementia - Sudden changes - Picture varies by person - Can have bounce back & bad days - Judgment and behavior not the same - Spotty losses - Emotional & energy shifts Vascular dementia - CT Scan - The white spots indicate dead cell areas - mini-strokes Lewy Body Dementia - Movement problems - Falls - Visual Hallucinations - Fine motor problems hands & swallowing - Episodes of rigidity & syncopy - Nightmares - Delusions - Fluctuations in abilities - Drug responses can be extreme & strange
Fronto-Temporal Dementias - Many types - Frontal impulse & behavior control loss - Says unexpected, rude, mean, odd things to others - Dis-inhibited food, drink, sex, emotions, actions - Becomes stuck or obsessed about things - Temporal language loss - Can t speak or get words out - Can t understand what is said, sound fluent nonsense words What is Needed to Live Life: - physical activity - mental activity - social activity - spiritual involvement - well-being and self-worth - minimize risky, challenging, or dangerous behaviors - reduce anxiety or distress Latest Thinking About Risk Reduction For Us All - Help - Mental activity - Aerobic activity - Vitamin E (low dose) & C - Heart Smart Diet - Omega 3 fatty acids (fish, canola, flaxseed oils) - Lower weight - Not smoking - Enough sleep - De-stressing Help Keeping iron in limits Keeping homocysteine right Vitamin B s Staying socially active Getting depression treated Control diabetes better Control hypertension better Statins (if needed) NSAIDS (if needed) Prevent head injuries Positron Emission Tomography (PET) Disease Progression vs. Normal Brains Normal Early Late Child The person s brain is dying G. Small, UCLA School of Medicine.
For all they lose, There are things they keep Let us learn how to use those skills and talents and support them as they are that moment And to be prepared to change because they are changing Normal Brain Alzheimers Brain Learning & Memory Center Hippocampus BIG CHANGE Understanding Language BIG CHANGE Sensory Strip Motor Strip White Matter Connections BIG CHANGES Automatic Speech Rhythm Music Expletives PRESERVED Hearing Sound Not Changed Formal Speech & Language Center HUGE CHANGES
Executive Control Center Emotions Behavior Judgment Reasoning Vision Center BIG CHANGES Getting Info In FIVE Senses - 1 st Vision - 2 nd Hearing - 3 rd Touch - temperature - texture - pressure - movement - 4 th Smells - 5 th Tastes Giving Information - 1 st Show - 2 nd Tell - 3 rd Touch - 4 th Scents & Aromas - 5 th Tastes Connect Hand-Under-Hand Assistance - 1 st let them see you use props & demo - 2 nd use a FEW words match to show - 3 rd offer friendly touch then guide - 4 th match then guide emotions to safety - 5 th Know the person & use preferred name
A Positive Approach (To the Tune of Amazing Grace) Come from the front Go slow Get to the side, Get low Offer your hand Call out the name then WAIT If you will try, then you will see How different life can be. For those you re caring for! How Can You Help? - Use a consistent positive physical approach - approach within visual range - approach slowly - offer your hand & make eye contact - call the person by name - stand to the side to communicate - respect intimate space - wait for a response How Can You Help? How Can You Help? - Communicate with awareness - look, listen, think! - give your name - make an empathetic observational statement - You look busy... - It looks like you are tired - It sounds like you are upset - wait for a response - Believe that the person is doing the BEST that they can! - Agree to do the BEST that you can! - Be willing to try and try again and again - Accept the changes help the person live life fully! Encourage Engagement ask a person to try ask a person to help you give simple positive directions - 1 step at a time use props or objects gesture demonstrate guide distract redirect Environmental Factors & Changes - Setting - Props - Programming
Environmental Aids - Setting - familiar - friendly - functional - forgiving (safe) Environmental Aids - Props - visible & invisible - timely - available - matched to ability - matched to interests Environmental Aids - Programming - structured - flexible - graded for success - 24/7 - personal - self-care, work, leisure, rest - socialization Progression of Cognitive Changes - What is lost - What is retained - What is typical behavior - What helps & works - Allen Cognitive Levels 5-2 - Diamonds to Pearls Now for the GEMS Sapphires - Diamonds - Emeralds - Ambers - Rubies - Pearls Now for the GEMS - Sapphires True Blue Slower BUT Fine - Diamonds Repeats & Routines, Cutting - Emeralds Going Time Travel Where? - Ambers In the moment - Sensations - Rubies Stop & Go No Fine Control - Pearls Hidden in a Shell - Immobile
Diamonds- Routines & Repeats Emeralds - Task Oriented Word finding problems Logic problems Place & time confusion Very independent or seeking constant reassurance Resents take-over Becomes anxious and frustrated easily Has trouble with new routines and locations Tries to maintain control & social behavior May try to escape Can use signage & cues Has trouble sequencing thru tasks & activities Skips steps Looking for what to do and where to be Believes they can do it Don t need your help Has a mission in mind Uses visual information to figure out what to do Follows samples & demos Can t do an activity if visual prompt is not there Specifics and content in speech are poor Ambers - Hunting & Gathering Rubies- Stuck on GO Uses hands to touch, feel, handle, hold Explores what is visible and hidden Invade other s space to explore Repeats actions over and over Sees in pieces not whole Imitates actions Tool use is challenging Follows others & staff Investigates the environment May taste or eat what they see Difficulty terminating Gross motor only Poor hand function Limited visual processing Very limited communication skills Unable to do more complex motor actions Can t stop Imitates your general movements Can t grade strength Better with rhythm and repetitive movements Poor appetite & intake Pearls- I Still Feel & Need You Knowing the Person Unable to walk or self-propel chair Immobile Difficult to hold head up Drifting in and out of awareness Problems swallowing Responds to calming touch and voice Needs contact to be aware most of time Feel love and caring Temperature control may need close monitoring - History - Values and beliefs - Habits and routines - Personality and stress behaviors - Other medical or psychiatric conditions - Sensory abilities & losses - Hot buttons
To intervene... - Observe & document the observed behavior thoroughly - what is the pattern - when does it happen - where does it happen - who is involved - what is said, done, attempted - what makes it better worse Is it really a PROBLEM A RISK - If NO - leave it alone - If YES - its time to problem solve - call the team together - put on the thinking caps Explore all of the following - - Personal background & preferences - Level and type of dementia - Behavior of caregivers & others approaching/helping the person - Environmental issues physical, sensory - Habits, schedules, rituals & time of day - Medical, Sensory & Psychosocial info Relook at the behavior - What does the person need? - What is the meaning of the the behavior? - Do you understand the behavior better? Make a PLAN! - Who will do what - When will it be done - How will it work - What environmental change is needed - What props are needed - where will they be Implement your plan! - Keep track of progress - Document what is happening - Communicate among the team members - Rethink - if it isn t working. - CELEBRATE - if it is!
This Little Light of Mine - This little light of mine - I m going to let it shine - This little light of mine - I m going to let it shine - This little light of mine - I m going to let it shine - Let shine, let it shine, let it shine! I Will Change! (to the tune of This Little Light of Mine) By Teepa Snow I am gonna meet and greet Before I start to treat I am gonna meet and greet Before I check your feet I am gonna meet and greet Before I help you eat How I start sets us up to succeed! No more just Getting it Done I m gonna DO with you No more just Getting it Done I m gonna help you thru No more just Getting it Done We re gonna work, we two Cause if I do it ALL, we BOTH LOSE! I m gonna laugh and dance with you Not just watch and frown I m gonna laugh and dance with you Not just stand around I m gonna laugh and dance with you We ll really go to town For the POWER of JOY I have found!