Teepa Snow, Positive Approach, LLC to be reused only with permission.

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1 Handouts are intended for personal use only. Any copyrighted materials or DVD content from Positive Approach, LLC (Teepa Snow) may be used for personal educational purposes only. This material may not be copied, sold or commercially exploited, and shall be used solely by the requesting individual. Copyright 2017, All Rights Reserved Teepa Snow and Positive Approach to Care Any redistribution or duplication, in whole or in part, is strictly prohibited, without the expressed written consent of Teepa Snow and Positive Approach, LLC 1

Improving Our Care in Hospital Stays ER to DC Planning Ahead Putting the Plan into Action Evaluating the Outcomes Some Information - If an emergency or urgent admit incidence of dementia is above 50%

2 Improving Our Care in Hospital Stays ER to DC Planning Ahead Putting the Plan into Action Evaluating the Outcomes Some Information - If an emergency or urgent admit incidence of dementia is above 50% - If dementia is a dx 3X as likely to go to a NH - If dementia is dx 25% more likely to need support services to return to prior residence - If dementia is dx 30-40% more likely to have a functional decline at d/c compared to pre-admission info - Close to 50% of people with moderate to severe dementia go to the hospital each year 2

3 Pain Management - Comparing patients with dementia and without dementia admitted for hip fx repair - Same number of procedures - Same types of procedures - ¼ the pain medications - 3 times the antipsychotics Some Stats and Info of Note - Feeding tubes are still be placed - Feeding tube placement did not affect outcome - Having an infection coming in did worsen risk for death - Average survival with or without a feeding tube was 6 months 3

4 Advance Planning Helps - When advanced planning takes place in ADVANCE - There is greater satisfaction on the part of family and care providers - Quality of care is described as better - When decisions are forced by immediate circumstances - More dissatisfaction with decisions - Longer hospital stays, more procedures done - Survival outcomes at 3 months not changed If admitted acutely ill with a Dx of Dementia the primary Dx is typically: - Pneumonia - Aspiration pneumonia - UTI - Dehydration - Fall related injury fx, head injury 4

5 When dementia is a 2 o Dx - Treatment of 1 o condition is impacted in over 75% of cases - Stays are longer - Functional losses are more common - Costs of care are higher - Outcomes are less positive - Additional acute issues occur in 50-60% of cases Acute Problems Connected to Hospital Stays & Dementia - Falls & fall related injuries - Wandering or elopement attempts - New onset incontinence - Acute confusion delirium - Skin tears and skin breakdown - Physical aggression toward care providers - Pulling out tubes and monitoring equipment - Inability to use call system 5

6 What Should Be Done? - Plan - Implement - Evaluate How Does the Family Role Change When the Person You Care for Has Dementia? Patient Care Partner Doctor 6

7 Plan Do you really want this person to go to the hospital? - There are other options - Let people know the plan - Talk through what that means - Feel OK about it 7

8 Figure out WHO should be the POA for health - Get a Durable Power of Attorney EARLY - Do the official document with a lawyer - Keep a copy on hand and ready - If you plan for DNR - Get it in writing - Make a simple sign to share Discuss advance directives IN ADVANCE - What to do and NOT do - How much to do - How long to try it how far to go - What is the bottom line - What do you want done for you positives and values - Make a list and keep a notarized copy on hand and ready 8

9 Build a Care Team - - Identify the spokesperson - communicator with hospital folks - Identify the hands-on care-givers --- three shifts. - Identify the support and comfort people food, drinks, quiet space - Identify who can keep the home fires going while this happens. - Identify the Communications Center person who will keep people posted and get info out as needed Make a list of What Helps or Comforts this Person??? - Gather things together and have them ready A Maternity Bag philosophy - Make a list of What Distresses or upsets this Person??? - Write this down and plan to share it with the hospital folks - Discuss ways to reduce this distress What Helps??? Plan to share that as well 9

10 Complete a Personal Information Sheet for the person you love - Preferred name - Illnesses or other medical conditions - Medications (drugs, OTC, vitamins, herbs ) - Bring the bottles if you can - Allergies or histories of bad reactions - Discourage stopping ACIs if possible (Aricept, Exelon, Reminyl) - Need for glasses, dentures, hearing aid - Amount of help needed for activities Personal Information Sheet - Degree of impairment - Memory - Language - Understanding - Hand skills - Movement - Judgment - Impulse control - Amount of help needed for activities 10

11 Personal Information Sheet - Family information - (names and relationships, favorites, names to avoid, may include pets) - Work history - (jobs, preferences, old and recent) - Leisure history - (what they liked and did, what they disliked) - Living situation - (where from, lived where, with whom, history, current) Personal Information Sheet - Spiritual history - (participation and comfort in faith and practice) - Daily schedule and patterns - (typical times of high activity and rest, what is the person used to) - Self-care preferences and patterns - (grooming, bathing, exercise, dressing, amounts of help used) - Major Life Events - (are there things that affected them from the past) - (bad hospital stays from before) 11

12 Personal Information Sheet - Hot buttons - (what gets them upset, words, actions, responses ) - Favorite Foods & Allergies - Favorite music - Bring it in and plan to use it - Touch and visual preferences - Stuff to look at, do, touch - Ask about massage, recreation, volunteers Highlight - Behaviors of concern - Wandering or elopement - Anxiety/agitation - Need for or desire for movement - Calling out or yelling - Swallowing or eating problems - Falls risk - Dis-inhibition say or do things - Immobility - Tendency to pull on things and tubes - Emotional lability) 12

13 What does s/he do when? - Hungry - Thirsty - Tired - Hurting - Constipated or needing to have a BM - Needing to urinate/pee - Wet/incontinent - Have had a BM How does s/he express emotions? - Lonely - Scared - Angry - Sad - Happy - Confused 13

14 Write it up in a neat and readable outline Make a copy to give to nursing Consider using a Safe Return Bracelet this may alert others to this person s condition and make them more sensitive and aware. 14

15 IMPLEMENT Put it to Work - Call in the Troops Heads Up Alert - Show hospital admissions your Health Care POA and any advance directives you have had notarized - Tell about your person s condition - key points on possible behaviors - what helps if known - how to communicate - what their behaviors might mean IMPLEMENT Put it to Work - Share with them the comfort/irritating information sheet highlight key points - Ask to - be able to set a rotating supervision schedule, as soon as possible if you can - Ask to be able to stay with the person during difficult procedures/actions if you know the person will do better give your rationale - Use the comfort items you brought - Modify the room for BEST performance 15

16 Remember TAKE DEEP BREATHS & BREAKS for yourself Use Words Wisely - How you say what you say makes a difference - SAY: He may have been striking out because he didn t understand what you were doing with his arm. - Rather than: Of course he hit you! You Scared him! 16

17 Stay CALM! - How you are feeling will get absorbed by others. Figure out How to Work with the Staff. - Who is in charge of what? - When is a good time to talk with them? - Make some positive thanks statements - Offer to help, when it makes sense - Set priorities what are the top 3 things you really care about let the other stuff go 17

18 Use a positive physical approach when interacting AND help others to do so as well Be Aware of Acute Confusion - Symptoms - Suddenly worse - Very different - Very agitated - Having hallucinations - More extreme - Harder to work with - More confused Causes Medications Fever Infection Dehydration New place More Restrictions Medical condition is worse 18

19 Stay on target with the advance directives and what is going on Re-read your agreement with the person you love to help you recall what they wanted most Work with the doctors, nursing, & therapy staff to be reasonable BUT don t be afraid to advocate for the one you love Patient Care Partner Doctor 19

20 Be prepared to step out during some procedures, if it works OK If not consider advocating for staying Keep a log - Write down key things - Behaviors - Medications times & changes - changes in the person - questions to ask - answers you get from whom - concerns raised by others - time frames 20

21 Plan for discharge start figuring it out early. - After hospitalization, you may be eligible for some special things - Home health services - Nursing home placement - Equipment - After hospitalization, you may be looking at a change in caregiving level or location Evaluate - What is working? - What is not working? - How is this going? - What needs to be changed? - What should be tried next? - What should be stopped/changed/started? 21

22 Realities to Keep in Mind - 1 out of 4 people with dementia going to the hospital will not survive - Hospital stays are VERY hard on everyone try to take care of yourself - Hospice may be more appropriate than a hospital stay During a crisis thinking & judgment get impaired Planning AHEAD is the key 22

23 Realities to Keep in Mind - It is always OK to re-think and change your mind - What is possible and what is reasonable are often two different things which would the person you love want - Hospitals are wonderful & dangerous places - This will not be easy, but it will get over! Improving Our Care in Hospital Settings ER to Discharge 23

24 Possible problem areas? Quick start of behavioral control meds to deal with agitated or aggressive behaviors? Pre-morbid baseline measures of cognitive status? Screening for 3Ds at admission? Interpretation of verbal reports & behavioral symptoms? ID of acute versus gradual onset of change? Protocol for monitoring when dementia or delirium is identified More possible problems? Use of environmental and human resources to support and prevent 2 o care issues? Pain assessment & management? Communication systems? I & O monitoring? Ability to tolerate inactivity, isolation, & immobility? Ability to interpret &tolerate sensory experiences 24

25 Still more? Pre-admission decision making r/t advance directives? Timely & honest discussions on what is possible, probable, and desirable based on presence of dementia, other health conditions, functional status, and quality of life? Acute versus continued care concerns & issues So - Hospitalizations happen - Hospital stays are RISKY for those with dementia - Hospital stays are stressful to staff & family members - Standard communication and monitoring systems are frequently ineffective 25

26 What Can We Do to Help? - Get Ready - Hospital BAG - Build a TEAM Share the load - Consider your Options - What is Possible VERSUS What Makes Sense - Evaluate How It Is Going - Now - Probable Outcome - Re-Consider - Learn from the Experience A Great Resource: Hospitalizations Happen ADEAR - NIH - htm 26

27 DISCLAIMER The content contained in this presentation is strictly for informational purposes. Therefore, if you wish to apply concepts or ideas contained from this presentation you are taking full responsibility for your actions. Neither the creators, nor the copyright holder shall in any event be held liable to any party for any direct, indirect, implied, punitive, special, incidental or other consequential damages arising directly or indirectly from any use of this material, which is provided as is, and without warranties. Any links are for information purposes only and are not warranted for content, accuracy or any other implied or explicit purpose. This presentation is copyrighted by Positive Approach to Care and is protected under the US Copyright Act of 1976 and all other applicable international, federal, state and local laws, with ALL rights reserved. No part of this may be copied, or changed in any format, sold, or used in any way other than what is outlined within this under any circumstances without express permission from Positive Approach to Care. Copyright 2017, All Rights Reserved Teepa Snow and Positive Approach to Care 27

Contents. Introduction 3. Required knowledge and skills 4. Section One: Knowledge and skills for all nurses and care staff 6

Contents. Introduction 3. Required knowledge and skills 4. Section One: Knowledge and skills for all nurses and care staff 6 Decision-making frameworks in advanced dementia: Links to improved care project. Page 2 of 17 Contents Introduction 3 Required knowledge and skills 4 Section One: Knowledge and skills for all nurses and