Helping Faith Communities with Dementia

Transcription

1 Objectives Helping Faith Communities with Dementia Noticing Changes and Knowing How to Help Meet Spiritual Needs - Finding our Center - Raising our awareness - Improving our skills and understanding - Gathering our support Spiritual paths Help us navigate life and explore the big questions: Who are we? What is our purpose? Is there more? Our focus will be our experience - What is our focus? - What do we believe? - Where do we look for signs of life? What is the message? What is our story? Our tradition? What are our rituals? Dementia affects the entire family - Emotionally, spiritually, physically, financially - Family dynamics/ changing roles - Marginalized - Processing our emotions 1

2 How can we help? Common Issues for people living with Dementia, their Care Partners and Faith Communities - Noticing it - Getting help - Helping out - Being there - Still being there - Ending it - Finding Joy Who are the players? - The person with dementia - Family members in the loop - Family members NOT in the loop - Peers in the loop or faith community - Other members with dementia - Members of a faith community or support system - Leaders of the system Typical Issues - Knowing Normal from Dementia - General lack of knowledge & awareness of dementia, Alzheimer s, and senility - Opening up conversations about it 1:1 or in the Faith Community or in the support system - Addressing changing abilities of support system/ community members - Preserving relationships during the illness for both the person with dementia and their care partners - Rejection of faith & faith community or support system by person & family More typical issues - Family dynamics each person is at a different place or has different ideas - Lack of family involvement family not around faith community is surrogate family - Acceptable behavior problems the person is not acting the way others believe they should or they used to - Mis-communication problems due to changes in memory, language, and judgment info is challenged - Territoriality anger and frustration about who should do what who should lead, follow, & get out of the way! - Withdrawal from Community isolation Why do we need to be aware of Dementia in our Communities and Support Networks? 2

3 A Few Facts - Aging is the greatest risk factor - 10% at age 65 TO 50% at age 85 - Early signs are subtle & inconsistent - Doctors only catch it 20% in early stages - It s a relatively new condition - There are many different types - It affects EVERYTHING! Normal 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 HARDER 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 VERY DIFFERENT Ten Early Warning Signs What could it be? memory loss for recent or new information repeats self frequently difficulty doing familiar, but difficult tasks managing money, medications, driving problems with word finding, mis-naming, or misunderstanding getting confused about time or place - getting lost while driving, missing several appointments worsening judgment not thinking thing through like before difficulty problem solving or reasoning misplacing things putting them in odd places changes in mood or behavior changes in typical personality loss of initiation withdraws form normal patterns of activities and interests - Another medical condition - Medication side-effect - Hearing loss or vision loss - Depression - Delirium - Acute illness - Severe but unrecognized pain - Other things What should the doctor do? - A thorough physical & medical history - Blood work - A neurological exam - A good history from the person and the family of the problem - A complete medication review - A CAT scan or MRI or PET scan - Neuropsychological testing screening for cognitive changes - FOLLOW-UP and counseling or at least a referral What should we do if we think something is happening? - Work Out Legal Support Financial PoA - Work Out Health Care Support HC-PoA - Check with Your Doctor Raise Your Concern - Consider a Neuropsychological Assessment - Consider Seeing a Specialist geriatrician, neurologist, gero-psychiatrist 3

4 What Makes Dementia Different than Other Conditions? - Forgetfulness and dementia look similar - Not consistent good days/bad days or moments - Gradually gets worse takes time to notice - Motor skills are OK correct sequencing & quality control are gone - Self-awareness is usually limited can t see it - Self-monitoring is not possible can t change - Social skills are often preserved - covering What makes dementia different that other conditions? - Work Out Legal Support Financial PoA - Work Out Health Care Support HC-PoA - Check with Your Doctor Raise Your Concern - Consider a Neuropsychological Assessment - Consider Seeing a Specialist geriatrician, neurologist, gero-psychiatrist Progression & Typical Issues - Way-finding problems - Need to get home, to work, to familiar - Can t remember new info on location, time, activity - Most not aware of impairments - Gets frustrated with limits set by others - May still drive or can get independent transport - Poor time awareness - Repeats the familiar over & over & over Progression & Typical Issues - Goes back in time hours or days or years - Gets stuck on important things to do - Can still think and watch others for inattention or information picks up on others reactions - Fluctuates in ability during 24 hrs - Wake-sleep disturbances - Will agree won t remember it or mean it - Acts and speaks impulsively or not at all Progression & Typical Issues - Follows/shadows selected people - constant - Can t verbally communicate can t make needs or wants known physical needs are huge - May seek others out OR avoid them completely - Follows visual cues doors/cars/windows - No self-protection wandering is a possibility - Can t use fingers or mouth well - Worsening mobility skills - No day-night or seasonal awareness - Can t meet own needs (food/drink/care) Unmet Physical Needs 1. Hungry or Thirsty 2. Tired or Over-energized 3. Elimination need to/did 4. Discomfort not right for me IN temperature, texture, fit, senses 5. PAIN IN!!! Joints - skeleton Inside systems (head, chest, gut, output) Creases or folds & skin Surfaces that contact other surfaces Top TEN! Unmet Needs Unmet Emotional Needs 1. Angry 2. Sad 3. Lonely 4. Scared 5. BORED 4

5 What do we need? How Do You Get Information from People Living with Dementia about What They Want, Need, or Think? What they show you- how they look What they say how they sound What they do physical reactions Positron Emission Tomography (PET) Alzheimer s Disease Progression vs. Normal Brains Normal Early Alzheimer s Late Alzheimer s Child Normal Brain Alzheimers Brain G. Small, UCLA School of Medicine. DEMENTIA The person s brain is dying Alzheimer s Disease Young Onset Late Life Onset Vascular Dementias (Multi-infarct) Lewy Body Dementia Diffuse LBD Parkinsonian type 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 5

6 Four truths about dementia Dementia does not equal Alzheimers does not equal memory problems - Two parts of the brain are dying - Chronic - Progressive - Terminal Memory Losses Where & when you are What is going on Where you want to go What you want to do Preserved abilities Confabulation! Emotional memories Motor memories Understanding Losses Can t interpret information Can t make sense of words Gets off target Preserved abilities picks up on facial expression picks up on tone of voice Sensory Changes Language & Movement & Sensory Changes - Losses - Awareness of body and position - Ability to locate and express pain - Awareness of feeling in most of body - Preserved Abilities - 4 areas can be sensitive - Any of these areas can be hypersensitive - Need for sensation can become extreme 6

7 Language Losses Can t find the right words Word Salad Vague language Single phrases Sounds & vocalizing Can t make needs known Preserved abilities singing rhythm Prayer, ritual automatic speech Swearing/sex words/forbidden words Impulse & Emotional Control Losses becomes labile & extreme think it - say it want it - do it see it - use it Preserved desire to be respected desire to be in control regret after action Vision Impulse Control Filters Self Awareness Other s perspective Sequencing Choices - Losses - Edges of vision peripheral field - Depth perception - Object recognition linked to purpose - SLOWER to process scanning & shifting focus - Preserved - see things in middle field - Looking at curious What can you do to help? - Recognize what the problem might be - Be willing to try something different - Use a Positive Physical Approach in Interactions - Use Positive Communication Skills - Consider Project Lifesaver - Contact the Alzheimer s Association or Society for more information 5 ways people take in data - Sight - Sound - Touch - Smell - Taste 7

8 Five Skill Areas Getting Connected Ways of Cueing & Helping Hand-under-hand Assistance Progression of Dementia Time Out Signal THIS IS HARD I'm sorry, this is hard, I hate it for you I am sorry THAT HAPPENED I'm sorry, it should NOT have happned INTENT I'm sorry I was trying to hep INTELLECTUAL CAPACITY I'm sorry, I had not right to make you feel that way EMOTION I'm sorry I made you angry Your Approach - Use a consistent positive physical approach - pause at edge of public space - gesture & greet by name - offer your hand & make eye contact - approach slowly within visual range - shake hands & maintain hand-under-hand - move to the side - get to eye level & respect intimate space - wait for acknowledgement Getting Connected - Do Introductions - Give your name and you are - Give a compliment - beauty, strength, brains - Share something - I m from and you are from.? - Make a positive observation - those are beautiful flowers/children - Find out about the person Ways of Cueing and Helping Visual Cues - Show Verbal Cues - Tell Tactile Cues - Touch How you help - Sight or Visual cues - Verbal or Auditory cues - Touch or Tactile cues 8

9 Hand under hand 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 Big Movements Pearls Hidden in a Shell - Immobile Diamonds Still Clear Sharp - Can Cut Hard - Rigid - Inflexible Many Facets Can Really Shine Diamonds - Know Who s in Charge Respect Authority - Can do OLD habits & routines - Become more territorial OR less aware of boundaries - Like the familiar FIGHT CHANGE - Can pull it together to make you look bad - Know how to push your buttons - Want to keep roles the same - Tell the same stories ask the same?s Spiritual Strengths - Rituals - Routines - Continued participation with less independent responsibility 9

10 Emeralds Changing color Not as Clear or Sharp - Vague Good to Go Need to DO Flaws are Hidden Time Traveling Emeralds - Think they are FINE - Get emotional quickly - Make mistakes don t realize it - Do over and over OR Skip completely - Ask What? Where? When? - Like choices - Get lost in past life, past places, past roles - Need help, DON T know it or like it! Spiritual Strengths - Rhythms and rituals - Music and prayer - Place of worship - Comfort in worship short and sweet Ambers Amber Alert Caution! Caught in a moment All about Sensation Explorers Ambers - Get into stuff - Fiddle, mess, touch, taste, dig, tear, fold.. - Move toward action and noise OR away - Sensory tolerance - Sensory need - Mouth, fingers, feet, genitalia - Can t figure it out react physically Spiritual Strengths - Favorite sensory experiences still enjoyed: - Sights - Sounds - Textures and movements - Smells - Tastes 10

11 Rubies Hidden Depths Red Light on Fine Motor Comprehension & Speech Halt Coordination Falters Wake-Sleep Patterns are Gone Rubies - Fine motor stops - Hard to stop and hard to get going - Limited visual awareness - One direction forward only - Can t figure out details but do copy us - SLOW to change - On the go or full stop - Use music and rhythm Spiritual Strengths - Songs and prayers - Celebration in moments - Quiet and still in moments - Individualized abilities and needs - OLD, OLD comforts still comfort Pearls Hidden in a Shell Still & Quiet Easily Lost Beautiful - Layered Unable to Move Hard to Connect Primitive Reflexes on the Outside Spiritual Strengths - Soul still there - Hidden spirit with only moments of connection What Can YOU Control? OR NOT! CONTROL The environment setting, sound, sights The whole day how things fit together How the helper helps - Approach, behaviors, words, actions, & reactions NOT CONTROL The person & who they have been Personality, preferences & history The type & level of impairment NOW Other medical conditions & sensory status 11

12 Building a bridge for a new emotional connection is the key - They are ALWAYS doing the best they can - Acknowledge their reality and let it go - Emotional reactions take a breath first - Learn from today so it wont happen tomorrow - Acknowledge things are changing - Set them up for success - They are ALWAYS doing the best they can What is possible? - Core beliefs - Beauty of life lived in the present moment - Life is limitless - Compassion A bird does not sing because is has an answer. It sings because it has a song. Healing Seeing beyond circumstances and connecting to the spirit. He who wants to do good stands at the gate. He who loves finds the gate open. Centering - Finding our Center - Grounding our energy - Being open to the spirit of another Tools for success - Enter their reality - They are ALWAYS doing the best they can. - Understanding type and stage - Ten basic needs - Connection - Using emotional memory and knowing what is possible Person Living with Dementia - I am who I was but I m different - My life story - My abilities to continue to express and experience spirituality - Safe spaces, safe people - Sacred spaces 12

13 Care Partners - Support - Safe spaces, safe people - Scared spaces - Dealing with grief and loss - Respite a team Clergy/Laity - Dementia awareness and knowledge - Positive Physical Approach - Hand under Hand - Being with - Entering their reality - Being comfortable with silence - Finding the GEM - Seeing what is possible - Celebrating the spirit Help? - PPA - Short and sweet - Rituals, prayer - Music - Make strong VISUAL cues - Keep words friendly and familiar - Pick up on cues respond - Celebrate moments of joy Finally - Don t give up or turn away - Don t ignore - Don t judge - Help both the person with dementia & their care partner(s) may need different help and support - DO Love and Pray and Connect! 13